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3/26/15 10:47 P

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My turn today. Thank goodness Tomorrow is Another Day. I've had enough of this one!! And enough of this week!

Doctor day today, and Allan swore he was fine, but he wasn't! No, he wasn't! And while Allan fussed and howled that everything was okay, I was trying to tell what was going on, and the doctor was looking at me, and the look on his face told me he knew that I was right and Allan was just howling.

Allan was all wonky and fuzzed up today. He swore that he wasn't, but he was out of it all day. And when the nurse took his blood pressure it was low low low. He tried to blow it off and said he was fine. But he wasn't. He was falling asleep while we waited for the doctor. Now at the end of the visit the doctor looked at Allan's blood pressure again and by that time it was okay.

But Allan wasn't all right, and the doctor and I both knew it. The doctor ordered a blood test on the way out to make sure things were okay.

I'd had plans for this evening. I was going to exercise at Curves with my daughter and then have Girls' Evening Out on the way home. But the doctor wanted me to stay home to make sure Allan was all right for today. He didn't look good.

So I gave up Girls' Evening Out After Exercising At Curves (which I didn't do, I stayed here, didn't exercise or go out) to stay here. So far Allan is okay. My daughter came over after exercising and we played a backgammon game and hung out together for a while.

And I thought if Irene and how you wanted to go out with your son, but Maurice was anxious and agitated, so you took him along...

Whatcha gonna do if you're a Caregiver?....

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3/25/15 10:01 P

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Well, Irene, I can understand that Maurice would be bored to tears by singalongs. So would I!

Games, well, it depends on the games. I had a wonderful time at the Senior Center playing "Sorry" with three other old ladies. This one old lady and I were mock-glowering at each other and mock-threatenng each other, "Oh, look at the move you made! I'm gonna get you...! I did enjoy those games, and I want to go back.

But I can understand Maurice being unhappy.

But you need time off!! That is so vital!

Mike came to visit today? And he was supposed to take out only you, but he had to take both you out? Did it work out? Did you have a good time, and some rest?

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3/25/15 9:46 P

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Oh, Michele...this sounds discouraging. Been there, done that, got the T-shirt, the mouse pad, the mug, the key chain fob, the refrigerator magnet...

I can only say that I do care about the people on this forum, and I know that we are fighting losing battles. I have no answers. I can only listen and give caring response.

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3/25/15 5:04 P

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Pixie, have gone over and over what needs to be done. Knowing his cancer is not responding to the chemo and unsure of what his next avenue is with the cancer, Thoughts of shunt placement is not a " right now " approach with Neurology. An Rightly so at this time. Once we have spoken with Oncology we will have a better idea of which path we will be going down. But for right now the key word is comfort for him. As well as answers to any question truthfully that he throws my way. It is all up to Him and God!

Michele - Northern Kentucky


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3/25/15 2:43 A

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Hello on Wednesday. Day care day, BUT. M doesn't want to go, I can't blame him. . He's not ome for games or sing alongs , it's a waste of money if he isn't getting anything from it. He's very into his art work now so just wants to do that,
I did say I need to go out and see people so will still try to have a me day once a week, maybe not on the same day. I am looking round locallly what I can get to easily . I need conversation , I get little at home, I watch the news and comment on something. M will ask What? He's watchingbut not taking anything in.
I know some of you are caring for physical problems too, M is quite fit in many ways .
Our son Mike is coming today. The plan was he would take me out, so now he has to take two of us out .! Look after yourselves, that is important , Irene

Irene in Nottinghamshire UK
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3/24/15 11:47 P

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Hi Michelle. A shunt is basically a tube that allows excess fluid in the brain to be diverted to the central body cavity. It then gets reabsorbed. It relieves the pressure on the brain. Complication include infection. Blood clots, stroke. I guess you need to think about his quality of life, and what his wishes are about end of life issues. Would he want to treat things aggressively? If so, then the shunt would be a good idea. But if he is not responding to his chemo, what is his life expectancy from the lung cancer? You will need to decide at what point to stop trying to get well, and to just concentrate on keeping him comfortable.

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3/24/15 10:12 P

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Sorry for my absence lately, we have received the results from the last 2 scans that Bob had done. Saw the neurologist yesterday. His take was excessive water on his brain. The answer for that would be the placement of a shunt. Prior to that, a series of tests would be done to see if a shunt would work. All these tests are not an emergency to have done. We need ( or should I say, I need ) further info on all this, geared towards a 79 year male who also is not responding to Chemotherapy for Lung Cancer. Wish us God speed. Michele

Michele - Northern Kentucky


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3/24/15 9:44 P

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Oooofff!! It's been a few days since I last posted. I don't want to lose contact with the people on this forum. There's more understanding and support here than in the real physical world.

With the exception of the therapist I see. I feel support and comfort there, and a funny kind of understanding from a man who is a couple of years younger than my daughter and pretty different from me.

Nothing much new. I'm still waiting to see what news comes about getting that certain someone into that certain place. We see the doctor on Thursday.

Thanks, Michele, for ombudsman info.

Today I was sorting out my feelings, and was reporting to the therapist how crummy I felt at the "support" group when I got invalidated. It's not so simple. I don't just dump a difficult person. Am I my brother's keeper? Yes, I am. Yes, we all are, or should be.

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3/21/15 8:26 P

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Try the State Council on Aging, not the local one unless the State sends you to them.

Michele - Northern Kentucky


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3/21/15 4:40 P

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Hello, Michele...I have no idea yet whether or not Centre Crest will take Allan. They're evaluating the situation right now. And they are going to send someone, well, perhaps a couple of someones, here to see us face to face and find out how things are here. I don't know if I'm getting a runaround, or if it just takes time to get things done.

We'd already looked into getting help from agencies around here, but the "help" they offer isn't of any use to us.

As for an ombudsman, I have no idea about such a thing. I gather that an ombudsman helps find agencies in some way, but I don't know where to find such a person.

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3/21/15 11:47 A

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Irene, Hope M has forgotten last Wednesday and continues to attend Day Care. That suggestion of taking sometime to share with the others may make him feel a part of what goes on there. Good Luck. Michele

Michele - Northern Kentucky


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3/21/15 11:44 A

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This has been about the 4th day for more sleep at night. However, he is more tired than usual after chemo. My day today is filled with March Madness as UK, UC and OSU are playing this afternoon. UK & UC play at 2;40 and OSU follows. That's my day aside from Bob's requests.
Have a good Saturday. emoticon emoticon
Michele

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3/21/15 2:15 A

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I am feeling a bit down. Perhaps due to lack of sleep . I cintacted the company who provide say care , they say M was ok on .wednesday though did ask once to go home. They advise don't mention it now just assume he's going on Wednsday,. Then suggest he takes something to show them at the day centre on Wednesday and perhaps he will go ? Who knowss ? He had told me he had no lunch there, the staff assure me he did, they told ne he ate Irish stew, so I casualky asked M was the stew good ? Oh yes very tasty,
We wait and see if he will continue on day care , Irene

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3/20/15 4:21 P

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Laura. does Centre Crest have a Skilled Nursing Section amongst there Level of Care. If they do not, that would be one reason for them not taking Allan. You do need to get with the Social Worker and find some answers and what is available around your area. Whether in home or facilities. Someone or agency is definitely giving you the run-around. Have you contacted the Ombudsman within your region?

Michele - Northern Kentucky


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REREBIGMAMA's Photo REREBIGMAMA Posts: 948
3/20/15 8:30 A

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I'm still not sleeping well. It's no longer because of my left hand, as I'm back to wearing my wrist support with minimal difficulties. Now, I'm just waking up every hour or two. Hopefully, this won't continue......

D's status hasn't changed. I'm beginning to wonder if she'll ever recover enough to return home. This house is too big for one person. I miss her.......

Nothing else happening here. I plan on going to Wally World today to pick up a few things I need.....

Sorry to hear about the snow warning, Laura. Hopefully, spring will bloom quickly for you. Those PA winters are rough.......

I hope y'all have a wonderful, safe and quiet day......

They call me ReRe.....

The only way you fail.....
Is if you quit!

Life is too short not to be happy and have a good time!!



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PIXIEBURDS's Photo PIXIEBURDS Posts: 273
3/19/15 11:29 P

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Hi Laurance, Sounds like the support group kind of fell off the boards this week. I understand, you don't' want to just abandon him. It would be a pretty heartless thing to do. Is this place you are looking at a nursing home, or assisted living? There are different levels of care and the level of nursing care is different. I can't imagine a nursing home not being able to care for a patient, unless they have a ventilator. Most nursing homes won't take them, and if they have IV fluids. Most nursing homes won't take them either. But dressing changes shouldn't be a problem. If it turns out they can't handle his care ask the social worker to find out what other options there are.

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3/19/15 11:18 P

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Michelle, my mom has had several TIA's.too. Hope you get the answers you need from the Neurologist and the PCP.


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3/19/15 11:12 P

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Michelle. the home care patient I used to care for had one of the video monitors. They are really nice, and you can hear what is going on too. I never thought about an app, but that would be pretty cool.

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3/19/15 9:51 P

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Forgot to mention this. Youngest daughter called to see if a wanted a camera with monitor to keep an eye on Bob from another room. She is also trying to find out if the monitor or the system has an app. allowing me to take time away from home that would let me know what he is doing while I'm gone. Told her to check it out an let me know. Now that would give me ease being away from home. Have a good night. Michele

Michele - Northern Kentucky


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3/19/15 9:29 P

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ReRe, Love my Tracker and wear it all the time except when sleeping. It has been from one end of Kentucky and up in Ohio as well. It will hold its tracking for two weeks. It down loads all activity after I return home from traveling. I choose not to travel with laptop any more when traveling.

Laura, their telling you that you made the call in the beginning to care for Allan. That was then and this is now. Perhaps those voicing their opinion are not caring for someone needing the care that Allan needs. Yet, little do they know that down the road the care their loved ones are getting may change to equal that of Allan's care. Hang in there, your doing and working for Allan and yourself. " Know when to hold 'em and know when to fold 'em."

Pixie, got packett in the mail and will check it through. Thanks!

Have a good night and a better tomorrow! Michele

Michele - Northern Kentucky


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3/19/15 4:33 P

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Today was the monthly support group meeting. I have to say that I did not feel supported today. I felt invalidated. This happened one time before. I left feeling worse than when I came in.

I felt blamed. I'm sure the women would say that they were not trying to blame me. but if felt like blame. They told me I choose. I choose to be in this situation, and I choose to have these difficulties. I have Free Will, so they claim, and I can choose to put Allan out.

If Centre Crest doesn't take Allan I should simply choose to tell them that Allan can no longer stay in my house.

And if he has no where to go? If Centre Crest won't take him for some reason, it's not my problem. Simply say that Allan has to leave my house, and it's his problem where he ends up. Let him worry about where he can live. Let him find some place. He's hard to care for? Put him out if Centre Crest can't take him.

I can't just abandon Allan! But it's my fault for choosing to not abandon him.

I could feel real anger rising up. But I grit my teeth and held on. I did not want to storm out in a huff. I don't want to cut off all support because today and one other day went badly. So I stayed put and held on till the subject got changed.

Now it's time to make Allan's dinner. And tomorrow is a new day (but with snow warnings - winter isn't over even if it's the Vernal Equinox).
emoticon

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3/19/15 4:17 P

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Hello, ReRe...well, um....yes...

I love my daughter dearly. OTOH, she can be like her grandmother. I'm happy that she had the good fortune to have a loving and close relationship with her grandmother, but....uh...sometimes it's like having my mother ragging on me.

The one difference, though, is that my daughter and I can talk, really talk with each other. There was no way I could talk with my mother, unfortunately.

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3/19/15 3:56 P

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I noticed a couple of you have a Sparks Activity Tracker. How do you like it?

They call me ReRe.....

The only way you fail.....
Is if you quit!

Life is too short not to be happy and have a good time!!



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3/19/15 2:04 P

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Afternoon!

Scan went well this morning, now comes the waiting. At present we have 2 more appointments to go; Monday and Tuesday. Since Bob sees the Neurologist on Monday and he sees his PCP on Tuesday we will have the recommendations of the Neurologist when he see his PCP. However, with the way he acted last night, think he may have had a TIA. Did get some consistent sleep last night, just hope it can repeat tonight. I'm really worn out. Did manage to schedule an appointment for myself to get my hair done. Bob's in the last month has been thinning more and his beard is just about vanished.

Have a good night and a better day on the morrow. Michele

Michele - Northern Kentucky


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3/19/15 11:00 A

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I slept a little better last night. My left hand is starting to feel better. Now, my nose is getting ready to start peeling. I did get a little too much sun while riding the bike on Saturday. So, I'm definately paying for having so much fun....LOL But, it was soooo worth it!

Laura.... I don't know if it would make a difference in your frustration level if you were caring for your daughter instead of Allen. I know that I was a bit less frustated caring for my dad than for my daughter, but I think that was because of the difference in their personalities. My dad was more laid back than my daughter, and was very appreciative of everything I did for him. My daughter can be demanding, and usually strikes out at me when she's frustrated. So, you can see how it might be easier to deal with one over the other. But, I loved them both and have tried to do my best with each of them. I know there may well be a time in the future, when I will wish one of them was still here with me. So, I try to remember this and enjoy the time we have together now because "this too shall pass"........

Hoping everyone has a wonderful, safe and quiet day.......

They call me ReRe.....

The only way you fail.....
Is if you quit!

Life is too short not to be happy and have a good time!!



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3/18/15 11:25 P

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Hello, Irene...I think being trapped in the house is a GREAT BIG HUGE problem for caregivers. I know that if I found myself trapped here in the house unable to get out or to even go into another room to something I'd go pretty crazy.. I can identify with your anxiety that something might be happening with Maurice.

I hope there is some kind of respite care available in England that will allow you to get some time to yourself while someone else looks after Maurice.

I want to get Allan into Centre Crest, but it's entirely possible that he may be too sick for a nursing home, and the only care available for someone like him is an amateur at-home burned-out caregiver. There's something awful about feeling trapped and struggling to get assistance. I hope that in England you can get some sort of respite care so that you can get time to yourself.

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3/18/15 11:16 P

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Laurance, has there been any word yet about the nursing home placement? I am so glad to know that you are living in your own home. How awful it would be to put that much work and effort into caring for Allen, if when he finally got placed the house had to be sold to pay for it. I went to see my sweetheart this morning and he was in therapy. They are working right now on building his upper body strength and endurance. That is wonderful, because if that goes I don't' know what he would do. He would basically have to be a Hoyer transfer all the time I guess. He has been getting very confused at night. But all the staff say he is real fun to work with.

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3/18/15 11:08 P

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stichinNan, you are not a bad person for wanting a little time to yourself. You need that to recharge your batteries. Being a caregiver is a tough job, and it seems never ending. But we have to remember to take care of ourselves too. Because if the stress becomes too much then you start having health problems of your own.

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3/18/15 11:07 P

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I did go out yesterday while M was at day care, I biught some new clothes and had lunch out.
But M came home grumpy , telling me he is not going to day care again, I can't find out what went wrong , he tells me garbled bits , so I must try to find out today , looks like my Wednesday outings are over,

Irene in Nottinghamshire UK
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3/18/15 11:04 P

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Oh good Lord, I just responded to ReRe who isn't getting sleep. And here you are, Michele. Am I the only person here who is so glad to enjoy some real sleep after years of insomnia? Sleep is so necessary!

And I can identify! Getting Allan to the doctor is like getting a small child to the doctor. I've become so used to childish behavior!

I don't know if it makes any difference, but Michele, I can identify!

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3/18/15 11:01 P

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Hi Michelle, I completely understand about the interrupted sleep. Since my sweetheart went to the nursing home I haven't gotten to bed before 1:00. And I have been getting up earlier so I can go see him before I go to work. It doesn't work to go see him when I get off, because mom has been alone for several hours and she needs to eat, and the animals need cared for too. When I can't sleep I take a Benadryl. It has a sedating effect, even though it is an antihistamine. I can still hear when someone needs me, but I am at least able to get to sleep. It is better if you have a block of time at least 6-8 hours for sleep time, because it can leave you feeling groggy in the morning otherwise. But, hey, you are already groggy, right. Here is to a better night of sleep for both of us.

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3/18/15 10:55 P

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Hello, ReRe, and thanks for the good news that the dialysis transportation did come! I was thinking about that and how awfully important that is.

Being able to go out is so important. And I gather Irene is also dealing with this difficulty.

I have it only partially. My day-long visits to my friends in New York State are over until I can get some sort of check-ins for Allan while I'm away. I can still go out for a while, but at the same time I am anxious and want to get back to see that he is safe and hasn't fallen or hasn't had some serious need while I was out.

Being able to get out and away is so important for a caregiver. Being trapped all day and all night is torture.

You've brought up a topic for me. Anger and frustration. I get frustrated and cranky as the dickens. And I wonder why.

I am NOT married to Allan. And this is NOT his house. It's MY house which I bought and paid for by myself with the intention of living here ALONE. And now he's all over the place and his needs are dominating everything. And I get grouchy and tired and burned out.

And then I think, What if it weren't Allan, but my daughter, who is the Most Important Person In The World To Me? Would I be more willing to give? Would I be less cranky and resentful?

We're talking daughters here, ReRe. I want to listen to you here. I have this fantasy that if my daughter were the sick and disabled one I'd be less angry and resentful and cranky than I am with a man I'm not married to and with whom I had some real issues. But I may be fooling myself. You're a reality check here, ReRe. I want to listen to you. Maybe it's not so much that it's a daughter, versus a problematic partner, but the fact that caregiving is really so awfully hard.

I wish I had something useful to say about sleep. My pattern used to be some 10 or more months of insomnia (and I was on the Insomnia Spark Team because of it), and then some two or three months of blessed and valuable sleep - and then insomnia for ten months or a year or so until another interval of welcome sleep.

But for some reason the pattern has changed, and I've had more than a year of sleep. And I don't know why this change has happened. Nor do I know if it will last. I wish I could say something useful. All I can say is that for me sleep is the escape, the few hours of freedom for me.

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3/18/15 5:32 P

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For the last 4 nights I have had only 4-5 hours of sleep, usually starting at 3 in the morning. I have cooked or warmed up Dinner 2 times out of those 4 days. So finally getting to sleep at 2 this morning and getting up at 6 was just not enough. Bob had Chemo this morning at 9:30. Getting him ready to go is like getting a child ready for the Dentist or anywhere they do not want to go. It has been quiet around here as overnight he developed laryngitis So tomorrow guess I'll start getting him ready for his scan an hour and a half earlier.

I need that sleep and he needs assistance through the night. Just what am I to do?
Michele.

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3/18/15 9:44 A

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Good news.... I don't know what happened with transportation on Monday, but they got it fixed and D went to dialysis yesterday. She'll be going again today because this is her regular day to go.....

I can definately relate to not being able to get time out alone or with friends. My adventure on Saturday was the first time I've been anywhere, other than church, since last July. It's difficult to relax and enjoy myself when no one is with D or when it's been a fight to get out. It's hard for me to keep from being angry and frustrated about this sometimes, but I'm getting better at not getting that way. I accept that I'm powerless over this situation with D. So, the only control I have is my control over the way I react to things. I work to keep myself from becoming bitter and self-centered and that's what helps me.....

I haven't had a good night's sleep since I was out on Saturday. My carpal tunnel syndrome is still keeping me up at night. Last night I woke up every hour, literally. Even though I was in bed for 10 hours, I only slept about 5 or 6, and I feel exhausted. Any suggestions on how to go to sleep and stay asleep?

They call me ReRe.....

The only way you fail.....
Is if you quit!

Life is too short not to be happy and have a good time!!



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3/18/15 3:09 A

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Just catching up on what you have bern doing. I get a feeling of frustration today , being let down by others Is hurtful . None of us is perfect we can only do our best. Which is a platitude I know and not helpful ,
Yesterday I went to a friend's funeral . Grand daughter Megan kept M company but had to go to pick her kids up from school . I didn't expect her to stay all the time just give him some company. But I had a message on my phone ,when was I going home ? From my daughter in law. We were at the golf club then where there was a chance to meet other friends and family of Jane who had died. There was to be refreshments and a film ot Jane life. But when I get asked when are you coming home I asumed something was wrong, I asked is M alright ? Yes but Megan had to go so no one is with him. I replied he will be ok, but then I couldn't settle so went home. He was sat watching tv nothing wrong , yes he was on his own but he isn't that bad that he can't be left. Am I not to ever go out on my own? Feeling a bit down today. Irene

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3/17/15 9:31 P

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Something is finally happening at Centre Crest. They have Allan's paperwork and they are going through the process of deciding whether or not Allan can be there.

If he's has just too many ailments they won't take him. If his health is too serious for a nursing home, that means that I'll just have to keep on caring for him. If professionals can't take care of a patient, that means it's up to the amateurs like me.

I'm getting that abandoned feeling again. It was like this in the Ithaca NY area back in the '90's. Mind you, it may work out after all. But there's no guarantee.

I have no hope. And I don't want to have hope. Too many times I've had hope, only to have things fail and fail. I'd rather have no expectations, no hopes, no anything. That way if things don't work out I won't feel crushed and disappointed. And if things do work out it will be a bonus.

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3/17/15 9:22 P

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Oh my gosh, ReRe...that's serious! Did anyone explain to you what happened? Is nobody coming today to get her there? Yes, missing dialysis is no joke!

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3/17/15 6:52 P

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HealthCare anymore is like Pandora's Box. You just never know what you are in for when you open that door. Afraid it just might get worse. Seems everything in HealthCare has been regulated to death except Pharmaceuticals and Health Insurance.

Enjoy this week and Safe travels. Michele

Michele - Northern Kentucky


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3/17/15 9:22 A

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The transportation service never showed up yesterday to take D to dialysis. So, she'll be 5 days between treatments which is very bad for her health. I hope this is a one time problem and not ongoing. Missing dialysis can shorten life expectancy....

Other than that, nothing new here....

Happy St. Patty's Day to All......

emoticon emoticon emoticon emoticon

Edited by: REREBIGMAMA at: 3/17/2015 (09:23)
They call me ReRe.....

The only way you fail.....
Is if you quit!

Life is too short not to be happy and have a good time!!



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3/17/15 8:47 A

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Quick hello tday I am just gettng ready to go to a funeral of a friend.grand daughter coming to sit with M awhile I am out.
Talk soon Irene

Irene in Nottinghamshire UK
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3/17/15 12:24 A

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I was able to take some Birthday pie to my sweetheart and we got there right when he was eating his dinner. So we had pie for dessert. I got him some Betty Jane's Gremlin candies for his birthday. That was on Sunday. I went to see him this morning because I had to sign all the admission paperwork. I had about 10 things to do that were all essential this morning before I could go to work. Fortunately it all got done. He got pretty confused last night and didn't know where he was at. It is not unusual for people with dementia to get worse when they are taken out of their familiar setting. I hope it doesn't affect him too badly.

One really annoying thing about this is the fact that he was not admitted to the hospital first. Medicare won't pay for his stay now because he didn't' have a three day qualifying stay in the hospital first. But the admissions person said his supplement insurance should pick up most of the cost. But I will have to pay for his room and board. About $207 a day I think. Yippie, I am so excited, NOT!

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3/15/15 9:11 P

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Well, I made it to Bike Week. OMG!! I've been to a few different bike events, but I've never seen anything like Bike Week! I'd never seen so many bikes and bikers. I rode around Daytona for about 5 hours yesterday. Then, I parked and walked up and down Main St., which was the center of the activities. I had a great time and I feel like a whole new person....

Everything comes with a price, however. My carpal tunnel syndrome in my left wrist started going crazy because I rode for too long in areas of high trafficand had keep using the clutch. My hand kept going dead and then burning (so painful) all night long. I wasn't able to sleep at all until about 6am when I fell into a very light sleep for a couple of hours. It was still worth it.....

So, I'm off to bed now and praying my hand won't keep me up tonight...... emoticon

They call me ReRe.....

The only way you fail.....
Is if you quit!

Life is too short not to be happy and have a good time!!



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3/14/15 10:35 P

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I Hear You Loud and Clear! Believe. Irene has the best of two worlds with their Health Care..... emoticon Going the way of UK was talked about back in the 60s shortly after Medicare came around as well as right before ObamaCare. How ever we are stuck with what we have, so might as well make the best of it and use it to our advantage. Michele

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3/14/15 7:12 P

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The way things used to work, there were no hospitalists. If a patient landed in the hospital, it was the primary doc who would turn up. If everything was under control, he'd turn up later or tomorrow morning. If something was urgent he'd turn up right away.

What that meant was that I'd take Allan to the doctor, only to have the receptionist apologize and tell us that Allan's appointment was cancelled because the doctor had to go to the hospital. Or the phone call would come before we were in the car and on our way, which at least saved us the trip. And we'd reschedule. Because there were too many patients and too few doctors this happened over and over. During one horrible time Allan got bumped FIVE TIMES IN A ROW. It was just too hard to get in because the doctor was always called over to the hospital. Too busy.

I kept Allan with this doctor because Allan is a problem patient and this was the first doctor who could work with him and who hadn't fired him as a patient. We'd gone from one doctor to another and things hadn't worked out. So I wasn't about to have Allan leave this doctor.

But I decided to leave, and I was looking around for another doctor for myself. There had been a superb Nurse-Practitioner whom I'd really worked well with, but Allan had been problematic, and the doctor supervising had fired Allan, and I left with him. But when I tried to find that really good Nurse-Practitioner I learned that she'd moved to New Jersey. And when I went around to other doctor's offices I learned that either they weren't taking new patients, or there was a long, long waiting list.

And then we heard that changes were coming, and they were getting hospitalists. That meant that our doctor would be in his office! He'd keep appointments!

So we have our doctor, and he spends time with us. And yes, the earlier in the day, the shorter the wait. The later in the day the longer the wait because the doctor was actually *talking* with someone. We're staying put with this doctor, because even though things aren't perfect, we can work together so that junk doesn't happen and Allan doesn't get fired.

The tradeoff is that the hospital stinks.

I don't know that I can expect better. I remember when we lived in NY State and the real horror show it was there, getting Allan's needs met. One agency doesn't have a clue what another agency is doing. One professional has no idea what other professionals are doing. And it's a mess.

Now it's evening, and the Blue Hour is upon us. Pretty light for a while. And then I want to go upstairs and call it a day. Tomorrow I want to see my friends, as I usually do on a Sunday afternoon.

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3/14/15 6:42 P

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Oh gee whiz, Pixie...is there any way you can make some sort of birthday happen tomorrow? It wouldn't be what you'd hoped for, but it could still be some sort of happy, or at least happyish remembrance.
emoticon emoticon emoticon

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3/14/15 5:33 P

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Hospitalist's, did not request them but sure paid for them. My cardiologist keep in touch with my PCP and that part went smoothly. An endocrinologist handled my Diabetes which sent me from a controlled Diabetic to uncontrolled. My insulin was cut in dosage which was fine while in he hospital. However, I was sent home with that dosage of Insulin as if I would still be in an non-stressful environment. Needless to say, a ten year accomplishment went down the drain. So starting all over once again, Looking out the door of my room in ICU you saw a large Bull Pen with people ( Hospitalists ) Just waiting for an unknowing person and family to come through those doors. No one explained there purpose to my family or I.

Technology was to help Health Care do a better job. As yet in some areas I have yet to see it. I have learned over the years that the more one squeaks the more the doors open. Each of us has their on style of doing things, which is good. The problem in some cases is getting the right professionals to listen. Noticed on our scheduling receipt for our PCPs and Specialist that each appointment is limited to 15 minutes. Who can relate to a doctor their problems and get answers in 15 minutes. That is one reason, appointments never start on time. Doctors that listen do not limit themselves to 15 minutes with a patient.

So how do we get the balance we need with Health Care?


Michele - Northern Kentucky


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3/14/15 4:31 P

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Well, today is not going according to plan. My stepson was supposed to come and help my sweetie sort through cupboards in the garage.. Instead he asked me to take him to the ER because his ankle is hurting so much. Turns out there is a hairline fracture and he has to go to a nursing home for therapy because he can't transfer without help. So much for celebrating his 82nd birthday tomorrow either.

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3/14/15 7:03 A

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Good morning, Michele...I've already met the Admissions woman. Back some time ago, was it last spring perhaps? I did make an appointment to go to Centre Crest to ask questions. This woman was kind and informative and helpful. She gave me a folder full of papers as well as her business card and the card of the director of care management.

A couple of months ago I went, without an appointment, and while the admissions lady wasn't there, another woman was helpful and ready to answer questions.

I, too, prefer to meet face to face. I don't know whether to request an appointment the way I did the first time, or to just walk in like I did the second time. Maybe what I will do is call the main office and ask for an appointment. If they transfer my call to the Admissions office and I don't get an answer and an appointment, I'll go over and walk in.

I did tell our primary doctor that I'm getting nowhere fast, and he said he'd look into what's going on. Ho-hum...

Yes, I am aware that admission from a hospital is often how it is done.

But as I explained to Pixie, our hospital is USELESS about this. Our primary doctor doesn't get to the hospital. It's the Hospitalist who sees Allan. And the Hospitalist doesn't know Allan! All the Hospitalist knows is the specific problem Allan came in for. He knows nothing of Allan's boatload of health problems.

Since Allan was in for a few days of intravenous antibiotics and a prescription for a week's worth of antibiotic pills, well, you don't go into a nursing home for that. And the hospital's Social Worker talked down to me and explained that since Allan is not totally bedridden and can still pick up a spoon and feed himself, he doesn't need a nursing home.

And that was that at the hospital. I'm so fed up with the hospital here. The quality of care has deteriorated so badly. The nurses are so busy there's no communication. The morning nurse has no idea what the night nurse told me. The doctor doesn't read the forms I filled out and doesn't know what medicine Allan needs.

So the hospital is not an option for getting Allan the help he needs.

Accreditation. What would that tell me? I do know that Centre Crest takes Medicaid.

Weekend now, but Monday I'll start again and try to get things done.

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3/13/15 11:29 P

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Laura, there are two ways to deal with phone conversations:

1.If the person you leave a message for does no return your request in a timely manner .....
they require a face to face. That way you know right off the bat what type of person you are dealing with.

2. People who return calls are usually the ones that are comfortable talking to people on the phone and carry alot of empathy for others in their dealings with people.

Personally when possible I would rather a face to face. That comes from my background
with Rehab and Nursing Home, an Residential Care in Administration of these facilities.
If Center Crest receives any Federal Monies, it must be Accredited with the Government, and receives Medicare and Medicaid patients ..... must have a waiting list. Private Facilities if taking Medicare and Medicaid also are required to have a waiting list for accreditation. Accreditation also includes The Joint Commission of Accreditation. Just as all hospitals must must have as well. If you remember Pixie also recommended a hospital admission and referral to Center Crest from the hospital. We both are aware of this procedure for admissions.

You have heard of the expression " You can't tell the book from the Cover ". There are checks an balances in Health Care as well. Information on accreditation of the facilities are Public Records. They should be available to you at Center Crest or any facility you are checking out. They can also be obtained at the Clerks office were you or anyone lives. The best place to find out how a facility or business is doing is to contact the local or state Better Business Bureau. Complaints from residents families will end up here. The Ombudsman with Aging is also a good one to work with. There are few with the Federal Government and maybe slow in getting back but, they are thorough in what they do.
You need to find out if Allan was not admitted to Center Crest because his care, required care to great for Center Crest to handle. Either the Hospital Social Worker or Center Crest owes you an explanation as well as your doctor. If he ordered or a suggestion of placement, he as well as you deserves an is due an answer.

Medicare and Joint Commision are Federal and parts of Medicaid as well. The Federal Government does not change from State to State. Your fighting for Allan as well as yourself.
The deeper you dig in the more answers you get, Granted its not easy.

Remember that " Squeaky Wheel "! Michele


Michele - Northern Kentucky


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3/13/15 8:43 P

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It's the end of another day now, and uneventful, I'm glad to say. Now I just want the day to end. I'll go up and see that Allan has medicine for the night. I should also put some creme/cream/gooshy stuff on his dry skin.

I was hoping to hear from the Admissions woman at Centre Crest. I'd left a message, but there's nothing on the caller ID. (Unless Allan answered the phone too quickly and the caller ID didn't pick it up...)

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3/13/15 5:39 P

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Hey,

Michele - hi, nice to meet you. No, I am not receiving help with my wife's care. When things were really bad - before and just after her tumor debulking - she was inpatient in icu and then the oncology ward and finally a rehab hospital. Since she returned home it is just me. At times that definitely felt unmanageable but since the drs lowered her steroid dose, things are a lot better.

Laurance - thanks for making me smile. I am sure you do care and I hope the tech wizards successfully worked their mojo. Re the prognosis... everything's okay if I don't google. At all. Ever. Not a helpful exercise. Primary CNS lymphoma, double hit (in case you were wondering).

Pixie - that sounds pretty scary. Glad your sweetheart wasn't hurt worse.

Irene - funny... I have lived in the US for 12 yrs+ now but I went to university in Nottingham. Small world. Ugh the early morning start sounds rough. When on a high dose of steroids and while battling insomnia, L once decided 3am was the ideal time to try a bath for the first time since coming home. Never fun.

ReRe - you are not being selfish to want a life of your own. Pretty much everyone wants that.

Juliet

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Knowing the challenges, travel, ad adventures in our past, I do know that 100% or even 50% is totally out of the question. Accepting what is present is becoming more precious right now.
Like today, outside it is rainy, gloomy, and absent of the Sun. It's Bob's favorite type of day. This week I can accept that but, last week I would not have accepted it. Yesterday he burnt alot of energy up, today he is sleeping and today, I can accept that. Clear explanations of why, makes letting go of happy memories that may or may not return easier to accept. " He will help you through those tough times. "

Michele - Northern Kentucky


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3/13/15 10:35 A

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Hi All....

It is a difficult life being a caregiver, but I am thankful for the opportunity to be with my daughter. I try to maintain a positive attitude in all situations. I know how difficult that can be at times because I've had my times of darkness. But, I continue to try to see something positive in all things. Sometimes I can't do it. Then, I turn to my faith and remind myself that all things work together for my good because I love God and I'm called according to his purposes. There was a time in my life when I was very negative about everything and I was miserable. I couldn't enjoy the good times when they did come along because I did recognize them through my own negativity. And, I realized that by being so negative, everything that came into my life was negative. It seemed I drew the negative energy to myself.....

I tell you these things as a preface to my next comments .......

I feel very badly for those 3 kids who will have to grow up without their mom. It will be difficult for them and I will pray for them and their family. However, the reality is, none of us are getting out of this life (or off this ride, as I like to say) alive. None of us are promised tomorrow. Thank God, their mom didn't suffer. How much more horrible it could've been. How hard it is for us to see our loved ones sick and suffering. How much worse for young children to see their mom suffer, linger and die? No matter how bad things are, they could always be worse.....

I hope I don't sound "preachy". It's not my intent. This is just how I see things....

My mother had a very bad stroke at the age of 44. I was 14 at the time. She died when she was 56. Prior to the stroke she had been an independent, active person. The stroke limited her abilities in most area. For 12 years she focused on what she had lost, instead of what she still had. To her, she was less than whole. To me and my siblings, she was mom. How much better would it have been for all of us,if she had changed her focus to what she could still be and do? How much happier would we have been, and how much more would we have enjoyed the time we had together?

I hope there is some meaning for someone in what I've written. I felt compelled to share this.

Have a great day y'all......

They call me ReRe.....

The only way you fail.....
Is if you quit!

Life is too short not to be happy and have a good time!!



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3/13/15 5:26 A

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It's ups and downs with our caregiving . We must grasp anything positive to dwell on. My main news is of Maurice having a consultation re his sight at the eye hospital , not good news. We were told a stroke in 2002 affected both eyes not one as we thought. I pointed out its only recently his sight had worsened . It could be Alzheimers related as that can affect sight,
Consultant did say he could do lazer treatment on one eye , but didn't hold out much hope IT would help. We have to think about that, right now M isn't keen to have the treatment, he says he can cope as he has . I darent say it could get worse, so we plod on.
My best wishes are with you all who have extra worry now. Irene

Irene in Nottinghamshire UK
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3/12/15 10:18 P

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Plan for coming month; Referral to Neurology, and Urology for Review. Oncology to widen his next scan to included the liver. Urine specimen was definitely + for blood. Now to get the water in him to help flush.

This has been a positive day for me. Started on new medication to get through or less all this anxiety. I do not need another vacation in the hospital.

Have a good night and a better day on the morrow! Michele

Edited by: MICHELE142 at: 3/12/2015 (22:19)
Michele - Northern Kentucky


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3/12/15 9:29 P

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Michele, I am so sorry the news wasn't good with the doctor. Hopefully they can get a handle on the brain swelling. Hugs to you too. Virtual and otherwise. I will be praying for you both.

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3/12/15 9:25 P

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Laurance, what a horrible way to start the day! But you were a good neighbor to call for help so quickly. I'll say prayers for her family tonight. You did what you could, and you deserve a hug. If I was there I would give it to you. Here's a virtual hug instead!

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Don't mind me. It's the end of the day and I'm done.

Although it was a sunny day, and although I did get the good news that my osteoporosis has improved, thanks to exercise, it was a sad day.

I live on the corner of the main street coming into town. There's a cluster of traffic lights and lots of cars and trucks and noise. And I'm frequently the one who calls 911 when something happens. And things do seem to happen at this intersection.

Today I heard that terrible crashing sound. It was a loud one, somebody had crashed into something - hard. I grabbed the phone and ran out to see what happened and call 911.

One car, one person, the 33 year old mother of three children, I later found out. Her SUV crashed into my retaining wall. Although she was still alive when I called and when the neighbor across the street tried to see if he could help, she did die before too long. I don't know if she died in the ambulance, in the hospital, or if she'd just that moment died when the paramedics got her out of the car. She looked all floppy like a rag doll.

What a crummy way to start the day! I feel bad for her and for her three kids who are now without a mother.

And now I'm done for the day.



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Thanks Laura.... things are bad here at present. The results of Bob's scan were called to me by his PCP. The remaining tests we both find out about tomorrow. today I was told his scan of the brain showed swelling in all ventricles. No cancer was noted on that brain scan. He does want Bob to see a Neurologist. As for the blood work and urinalysis, we will find out that tomorrow. However, something must be going on as he also talked with Bob's Oncologist.

As the saying goes " tomorrow will tell the story."

Have a better night and a better tomorrow! Michele

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3/11/15 11:27 P

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I think back to when my son was born for the letting go of what was. He was born premature, and has a genetic syndrome that is very rare. From the day he was born everything changed. I was now the mother of a sick, disabled child. My life revolved around doctors visits, hospitalizations and surgery, therapy, and one school crisis after another. I couldn't work for 9 years, and my marriage failed, I ended up on welfare so my son could get the medical care he needed. Life changes, and we often have no control over it. But we learn to live the life we are given. After my son grew up and was in residential care, I thought I would be alone forever. But God had a better plan for me. I met my sweetheart and we grew to love one another. It is hard now to see him declining, but I would rather have him in my life, no matter that he has Alzheimer's, than have lived alone forever. My life is changing again due to him and my mother's declines, but I know that I can do this, just like I did it with my son. You can survive the changes in your life Michelle. We are here for you.

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3/11/15 10:40 P

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Michele! What's happening? It sounds to me like you're in some real distress here. These are Big Life Questions: How do you let go of what was, and how do you accept what will be?

For me, it's been really really really getting it that Nothing Lasts. Everything is Impermanent. Life hurts. And finally becoming comfortable with that. Well, not comfortable, I sure do gripe and bitch at my therapist. But learning to live with it and accept reality.

It sounds as if it's for you the way it is for me and likely everyone else here. The good times are on the way out now. All the really swell things are in the past now. Our Loved Ones are deteriorating, and they aren't going to get better. Reality bites.

I guess I'm dealing with this now because I was facing Impermanence and the lack of substance that Impermanence implies, and the pain that comes with it a long time ago (I was in my early 30's, hey, that was 40 years ago when I started learning to deal with all this). And now these conditions are like a Bad Old Friend.

Another thing I did which is counterintuitive is to give up Hope. I stopped hoping years ago.

And I know that this is shocking for most people! How can you live without Hope??! Hope is important for most people, I gather.

Very well, actually. Better than before.

Of course you do hear me grumbling and complaining here. Caregiving really sucks. It's hard and tiring. Things just keep getting worse. Our Loved Ones are not going to get better. And I think it helps to feel free to vent and fuss when we get really tired and burned out and in despair with just too many obstacles and problems. This getting-Allan-into-the-nursing-home stuff is a real pain in the butt. I'm tired!! I'm cranky and burned out!!

I don't deny that there's plenty of misery going on.

But letting go of Hope (which I did years ago) relieves me of an additional layer of pain and suffering. Letting go of Hope allows me to be here now and be in the present, which is all I have. It relieves me of wishing for a never-neverland. It relieves me of helplessly looking ahead to a future that may never come. It spares me desperately expecting Deliverance which will probably never come. It allows me to be fully in the Present and to deal with the Present.

My therapist and I did talk about what I can do once Allan is in Centre Crest. And that's okay. But what's not okay for me is to get into that desperate Hope for Deliverance, and that clinging to Hope Hope Hope while things just keep on keeping on and Allan makes another mess or falls again or compulsively picks his sores all bloody again.

Of course I do want to get Allan safely into Centre Crest. And I do want a better life for both of us once this happens. Giving up Hope doesn't mean not trying to improve things. And it doesn't mean I don't whine and howl at my therapist (poor guy! How can he stand me??). Life sucks sometimes. A lot of the time.

But there's this whole layer of helpless feelings and agonized wishes and desperate longing that I no longer have. There's this future orientation I no longer have.

Allan and I are both getting Old. We no longer have an endless life stretching out before us. I have to think of limited time now, and limited abilities and the fact that there are lots and lots of things I've wanted to do in my life, and it isn't going to happen! No, it didn't turn out to be what I would have wanted. Sorry 'bout that.

What I have now is the Present. Frankly it's pretty crappy right now. But it's what I got, and I want to make the most of it. Even if my "most" is rather limited at the present.

I don't know if any of this will help you, Michele. But I wanted to respond because your two questions seem to me to be very deep, very real, very human, very part of the things you are going through now, and very worth responding to.

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3/11/15 10:21 P

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Michelle..... Can you be a little more specific about your question?

They call me ReRe.....

The only way you fail.....
Is if you quit!

Life is too short not to be happy and have a good time!!



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3/11/15 8:45 P

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Thanks, Pixie. I hope to have Allan safely in Centre Crest before I need to have one of those Hoyer lifts.

Things move at a snail's pace. I feel like I'm trying to stuff the toothpaste back in the tube. Today I saw my therapist. (No, I don't expect him to change me or fix me. I consider therapy to be Emotional Hospice and support.) He said that my situation reminded him of Little League. (He has sons, and Cub Scouts and Little League are familiar to him.) He says that someone hits a pop fly and three little boys will run to catch it - and then they'll stop because each of them expects one of the other two to do the catching - and nobody catches it.

Well! There we are! The doctor is waiting for the social worker to do the job. The social worker is waiting for Centre Crest to do the job. And I don't know who Centre Crest is waiting for. Looks like everybody is looking at everybody else.

What is clear is that nothing is going to happen until I do it myself. I've called the Admissions person at Centre Crest twice, and only gotten her voice mail. I didn't leave a message because there's a possibility that I'll be out when she calls back, and my best friend refers to Allan as the "Non-answering Machine". That man can't take a message! That man can't remember who called. That man will say anything at all over the phone.

But maybe I will just have to play telephone tag and hope Allan doesn't make a mess.

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3/11/15 4:47 P

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Regarding the hoyer sling. It is a flexible cloth. The way you position it is to have the person roll to their side, push it under them at least halfway, then roll them to the opposite side and pull it through. The top should be at least at the shoulder or a little higher. The bottom should go to the hip. The thing that determines whether the person is sitting or reclining more is the placement of the straps on the cross piece. If you get one the Homecare supply agency will train you on how to use it. You might ask a local nursing home director of nursing if she could show you how they are used. There are different brands of machine and different names but they all work the same way and hoyer is kind of a generic term.

Edited by: PIXIEBURDS at: 3/11/2015 (16:52)
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3/11/15 3:37 P

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I have 2 questions I need help answering:

1. How does someone let go of what was?

2. How does someone accept what will be?

Edited by: MICHELE142 at: 3/11/2015 (15:37)
Michele - Northern Kentucky


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3/11/15 10:24 A

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I went to Google and asked about the Hoyer Lift. Wow...but it appears that you must first somehow get the patient sitting in that sling. The last time Allan fell, well, it was a good thing that he was finally able to ootch himself over to the bed and then pull himself up slowly. There was no way I could lift him.

Allan falls. It's not about balance or about little throw rugs. He stands and stands and stands and then blacks out, and down he goes.

He's having a lot of foot and ankle pain these days. That's the bad news. The good news is that he can't stand and stand and stand. So he doesn't fall.

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3/11/15 9:46 A

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Good morning y'all.....

Well, I'm over my "pity party". I can work it out if I really want to go to BikeWeek. It's not all about D. Part of it is because I let myself get so wrapped up in what was happening with D and ignored some of the things I should've taken care of long before now. I let my bike sit without a working battery for weeks. I didn't follow up when I initially ordered the battery or I would've had it by now. And, I hate going to bike events alone; something I need to get over.... Anyway, the weather report has changed. There's a 40% chance of rain today, but it drops to 20% and cools off a little tomorrow and Friday. Saturday and Sunday look like they'll also be nice. So, I can still go if I really want to. I guess I was just feeling sorry for myself yesterday....

I may only get to see Dee once today, if at all. The exterminator is coming this morning. That's one thing about living in Florida, periodic spraying is almost mandatory, but it's a lot less expensive here than up north. D goes to dialysis at 1pm and may not be back to the rehab until 6pm, and I have church at 6:30pm. So, we may not be able to see one another today, but I still have to take her dinner to her because she doesn't like the food at the rehab. I don't think the food is bad, but she has a very sensitive stomach and a bunch of food restrictions. I'll run the food over when I get a chance later. D is more understanding, most of the time, about me going to church than about me going out somewhere else. But, she does get jealous about even church at times. I think it's because she isn't able to do the things she used to do before she got so sick. I try to be understanding but, like yesterday, it's hard at times.....

I'm looking forward to church tonight. I've started attending a new church for the past 2 weeks. This church seems a better fit for me than where I was attending. I feel bad about leaving the other church because I made a lot of friends. The people there are very nice and the congregation is very active in different types of ministry. However, the church I've just started attending is of the type I grew up in and feeds my soul.....

Nothing else going on here, which is a blessing.....

Hope everyone has a beautiful and uneventful day..... emoticon

Edited by: REREBIGMAMA at: 3/11/2015 (09:51)
They call me ReRe.....

The only way you fail.....
Is if you quit!

Life is too short not to be happy and have a good time!!



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3/10/15 11:54 P

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Hi Laurance. The Hoyer lift is a mechanical device to lift patients who either cannot bear weight, or who are too heavy to lift safely. They have a fabric sling that goes from the head and neck to the buttocks and there are long straps that go under the legs and support the body. You attach the sling to a metal cross piece and the machine just lifts the person up to whatever height you need. If you google adaptive equipment, and hoyer lift you can see a picture of them. It has been a real lifesaver for us, because my sweetheart falls pretty often and he is not strong enough anymore to get back up without help. Without it I would need three people to get him up. We got it through our local medical supply store. The doctor prescribed it and we rented it on a monthly basis until it was paid off. Now we own it. The rental was covered by his medicare and supplement insurance.

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3/10/15 9:21 P

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Hello, Juilet...any hopeful news concerning this brain cancer? I sure hope you will be able to get some sort of assistance.

It can become very difficult to care for ourselves when our loved ones' needs take precedence and priority over ours. You see from our posts that both ReRe and I feel guilty when we want something for ourselves.

Let's keep talking here...

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3/10/15 9:15 P

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Wow, Pixie...he fell out of his wheelchair? Falls! Falls!

What is a Hoyer lift? I've never heard of this. (I should ask Google.) Allan falls and I can't lift him. He's had a broken wrist, a broken foot and a sprained ankle.

So you were able to use this device to lift your sweetheart.

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3/10/15 9:09 P

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Oh my, Irene! Allan has done that, too, from time to time. Moreso in the winter when the days are shorter and the nights are longer.

Sometimes he thinks it's early morning when it's late in the evening. Or he'll think it's bedtime when it's time to get up, but it's not light yet. At this point I can simply tell him what time it is, and that's that. So far I don't have to start the day earlier than I'd like. Some times if he's fussing in the early early morning I will give him one of his pain pills, and that will hold him till I'm ready to start the day.

I hope you can get some nice things done while he's snoozing in his recliner...

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3/10/15 9:01 P

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Oh, Michele...that's a lovely image! You dancing around with the wheelchair!

Your rain has now reached us. It's clammy out there, but thank goodness not freezing.

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3/10/15 8:58 P

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Guilt, ReRe! I can sure identify! I get to feeling so awfully guilty for wanting to live my own life. And like you, my guilty feelings are not relieved when people tell me I have a right to a life.

Caregiving is bringing out the worst in me. My mother drummed it into my head, absolutely drummed it into me that little girls were here to be pleasing to people, and to learn to serve others. Nice girls never ever say No to another person. The worst thing a girl can be is selfish. Girls must never think of themselves but always think of others and look for ways to serve and be useful.

Would D not understand if you visited once that day and then went to Daytona?

Oh wow! Temperatures in the low 80's! Up here where you escaped from we had 37-40 degrees, and that's like a heat wave after the recent horrible bitter cold.
emoticon emoticon emoticon

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3/10/15 5:22 P

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Welcome to a rainy, rainy day here in Northern Kentucky. Ohio River as of last night before the rain was dropping below flood stage. Now with all the rain the alerts are back in the forecast for additional flooding at flood stage once again.

Bob went for his CT scan and Blood Work this morning. We did " sing in the Rain" going and returning. Danced around with his wheelchair and bench-pressed it in and out of the trunk twice.
Now comes 24 hours of waiting for the results and his visit to his PCP.

If I had a cycle an sidecar plus a hoyer lift....... I would be "ride in the rain" or wait till tomorrow and ride in the sun.

Have a good night and a better day tomorrow. Michele

Michele - Northern Kentucky


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3/10/15 12:22 P

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Hi Everyone.....

Welcome Juliet.... I hope we can be a support to you. We all know the difficulties of being a caregiver by personal experience. I'm glad you're part of the group....

Well, I just feel like whining today.... It's BikeWeek in Daytona and I'm only 20 minutes away. My motorcycle is sitting in my carport rotting away.... I hardly rode it last summer in PA because I was trying to get ready to move and I haven't rode it at all since we got here because my life has been too chaotic. My battery is dead and I'm waiting for a new one. My bike is filthy. It's never been so dirty as it is now. I could drive to Daytona in the car, but what fun is that? I thought about it, but D has been insisting on my visiting her twice a day. If I were going to go to Daytona, today would be the day. It's going up into the low 80s today with only a 20% chance of rain. As the week goes on, it's going to get hotter and wetter. Am I being selfish by wanting a life of my own? I know you all will say "no", but that doesn't relieve my feelings of guilt. Oh well..... thanks for listening....

Edited by: REREBIGMAMA at: 3/10/2015 (12:23)
They call me ReRe.....

The only way you fail.....
Is if you quit!

Life is too short not to be happy and have a good time!!



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3/10/15 3:15 A

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Hello friends and welcome to Juliet .i hope you keep in touch and share ups and downs , I look after my husband ,we are in UK so the health sytem is different but caring is the same everywhere, we do our best but there are frustrations,
My dh is losing the ability to tell the time, it doesn't akways matter but does in the night when he thiught it was time to get dressed at 12 30. I steered him back to bed. Then 5 am he was up, I thought the bathroom run but no he was showering ready to start the day. Which means I gave to get up to see to morning meducations , put the heating on and his breafast out. Oh dear it's going to be sure long day , he will just sit in hus recliner and doze ! We plod on. Irene

Irene in Nottinghamshire UK
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3/10/15 1:01 A

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Well, this morning was interesting. A woman from the home care agency stopped by to pick up paperwork. She was just getting ready to leave and my sweetheart leaned over to hold the dog and he fell out of his wheelchair onto the track for a sliding door. Fortunately he didn't get hurt too badly. His arm has a cut, and a bruise on his forehead, and he thinks a sprained ankle. We have a hoyer lift fortunately, so I was able to get him back up. I need to call the homecare pharmacy tomorrow so they can come out and repair his wheelchair. He bent the locking mechanism on one side.

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3/9/15 9:51 P

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HEL_L_L_L_P!! Problems with my stupid computer ever since I installed the new version of my anti-virus! We have a new person here, And I want to respond! I hear you! I do care that you are taking care of your wife with brain cancer.

I spent almost four hours with computer geeks/computer wizards getting the stupid anti-virus up and running, and now I will have to spend more time finding out why lots of things don't work any more.

I'm here!! I care about what's happening with all the dear people and their loved ones here. I have big fat computer problems, that's what

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3/8/15 11:34 P

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Hi and Welcome!

Yes you do need to take care of yourself as well as your wife. I'm sure by reading all the posts in this read you will see that we all are looking for that answer. Slowly but surely we are all making a dent in that area.

So sorry to hear about your wife. Are you receiving any help with her care? Pop in here anytime and let us know how you are doing or let us know how we can be of help. There are no small questions or small problems. We at times need to just vent and we all vent here, and do at times receive suggestions that can help in Coping with any problems we have.

Looking forward to chatting with you! Michele

Michele - Northern Kentucky


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3/8/15 10:55 P

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Hey,

I am trying to re-engage with Sparkpeople and, well, life in general. I am the primary caregiver for my wife who was diagnosed with a rare form of brain cancer in November. My goal is to find ways to care for myself as well.

I look forward to getting to know you all.

Juliet

Juliet, NM


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3/8/15 10:16 P

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Evening and what a perfect day today was. It felt so nice running errands in a wind-break instead of a ski jacket. Tomorrow is in the forecast for the lower 50s, meaning my sinuses will be welcoming a whole new set of problems. That also is living in the Ohio River Valley.

bob has been more alert these past 36 hours and moving around more with his walker. Appetite much better than prior to his fall. I let him use the cane once this morning, caught him before he would have fallen and noticed that when he places his cane to the floor the base of the cane is on its side throwing him off balance, so back to the walker until he is seen by his PCP. Hopefully, the CT Scan Tuesday will tell the story.

Have a good night and a better day tomorrow! Michele

Michele - Northern Kentucky


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" Finish each day and be done with it. You have done what you could."
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3/8/15 10:07 P

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Oh don't you just hate it when your computer gets a virus! If people spent half as much time doing something good and productive as they do coming up with viruses, and scams, and such things the world would be a much better place!. I used to say they should just behave like their momma's taught them, but now I realize that their momma's aren't teaching them because they are working.

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