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ANGORA4
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3/5/14 11:28 P

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So well said, Annie. There's just so much we don't appreciate until it is gone. Time here is finite, and we waste so much of it on things that don't really matter. I was thinking about the family tree that I put together for mom. A lot of the people that I contacted for photos and stories are gone now. I'm sure a lot of those photo albums ended up in the trash, as most people never mark the backs of the photos with names, after all, we know who they are, why would we mark them? Trouble is, the next generation of people have no clue. . .so precious family photos get dumped. No one really pays attention to those tired old stories, and no one bothers to ask how Aunt Emma makes that great holiday dessert.

Then they're gone. And you realize this huge vacuum has opened up. We have no clue who the extended family is, Mom kept in touch with them, we never did. We don't know how to make the traditional holiday foods, the older generation did that, and many of them had the recipes in their head, not on paper. So many stories, and traditions, and family contacts get just plain lost, because our generation never picked up the ball and learned from our elders.

Now, our generation is soon to pass, have we prepared the next generation? Do they know all the family connections? Are the family photos organized and labeled? Are the favorite family recipes written down and taught to the next generation? Have the family stories been recorded, to share with a new generation that will have never heard them? Do we take time to write to Aunt Edna and Uncle George, and keep in touch?

Ouch! I feel that ball dropping on my foot.

Judy
"You can make clothes from the wool of your sheep. . .the goats will provide milk for you and your family" (Proverbs 27: 26, 27)


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ANNIESADVENTURE
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3/5/14 12:00 P

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Judy, that reminds me of a routine comedian Mark Lowry did about living our lives backwards, starting in the nursing home and moving back through our childhood. How much more we would appreciate the things that we thought were lost forever.
My niece is now a grandmother, caring for her grandchildren. Having time to herself is rare. She told her mother that if she could just go back to her childhood she would do everything her mom told her to do, including naps!

Sometimes when we are overwhelmed with caregiving, we think about the things we would do once we have more time to ourselves. Then we will wake up one day to the realization that our loved ones are no longer there. Things we want to share with them go unsaid. Many times I wished I could talk to my maternal grandmother who lived next door until she could no longer live alone and moved here. How many times have I spoken to my parents who are no longer here. I would not wish them back for anything but I miss them. My little sister who does not live near enough to visit, called me almost every day the last couple of weeks. I think it has occured to her that we will not always be here. She was really close to our sister who passed away last Thanksgiving.

Edited by: ANNIESADVENTURE at: 3/5/2014 (12:03)

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ANGORA4
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1/31/14 11:53 A

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We forget how much children internalize the things around them, terrified of clowns, my son was terrified by Santa. Our parents are in the process of becoming children again, and we becoming their parents. I guess the good part of that is that they are preparing to be reborn, well and strong and young again in the next world, like Merlin living his life backwards in White's King Arthur stories.

Judy
"You can make clothes from the wool of your sheep. . .the goats will provide milk for you and your family" (Proverbs 27: 26, 27)


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ANNIESADVENTURE
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1/31/14 2:27 A

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Judy, I recognize that situation. We had to stop watching the evening news for that reason. Dad would look apprehensively out the windows, sure that whatever they were talking about halfway around the world (like war) was happening in the back yard.


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ANGORA4
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1/28/14 11:14 A

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Wow! You're right, that is a definite defining moment. Isn't it odd how they suddenly get something in their head, and can't drop it? For Mom, I discovered that television had a definite effect on this. She would take what she heard as a TV show, internalize it, and was convinced the thing had happened to her. It took us a while to figure this out, and we had to skip anything resembling a disaster movie. They were true disasters when I would end up spending the rest of the night trying to convince mom we weren't in danger.

Judy
"You can make clothes from the wool of your sheep. . .the goats will provide milk for you and your family" (Proverbs 27: 26, 27)


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CHANTENAY
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1/27/14 10:41 P

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Today was a defining moment when my dad told me he was taking my nephew, his own grandson, to court for not giving him a sum of money 3-1/2 years ago. My nephew called me about 4 hours later and told me that my dad had been "harassing" him all day at work with phone calls that if he doesn't come up with the money, he's calling a lawyer to start a lawsuit. I know my nephew would never cheat him or anybody else. To make a long story short, this evening it was decided my daughter would become an agent on their bank account and so she can start looking for the money without hauling dad along to the bank in the cold weather. Suing your own grandson is just so ridiculous. My nephew texted me tonight that dad was a lot more reasonable and said everyone is mad at him. I had called him this afternoon and laid the law down.

emoticon emoticon emoticon

Edited by: CHANTENAY at: 1/27/2014 (22:44)
"Your inner athlete is dying to play!" - Cory Everson

Change doesn't happen without struggle.


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ANGORA4
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1/26/14 7:35 P

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Whoa, that really is a defining moment. I think mine was when I came to visit my mom and her 'treasures' were out on the porch: some jewelry she'd made, her bowling ball, a few other odds and ends. She had no idea why they were there, but she asked if I'd move back in with her, she was scared she was 'losing it'. (She was, and I did.)

Judy
"You can make clothes from the wool of your sheep. . .the goats will provide milk for you and your family" (Proverbs 27: 26, 27)


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ANNIESADVENTURE
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1/25/14 9:32 P

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I remember the day Mom laid her head on my chest, just like a child would do with a mother. It was uncomfortable for me. We were affectionate toward each other but that was my first clue that things were changing. The memory still gives me an uneasy jolt.


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ANGORA4
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1/25/14 8:30 P

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You're right Annie, sometimes it happens so slowly, you don't notice the change. When Mom gave up her car in her mid 80's (she was driving home from her card club, the same trip she'd made weekly for thirty years, and had no idea how to get home. She gave up driving that day), and I started running her errands.

I started going down to her home more and more often: laundry, cleaning, lawn mowing, bush trimming, hot meals. . .pretty soon I was down there every day. It just happened, it needed done.

Judy
"You can make clothes from the wool of your sheep. . .the goats will provide milk for you and your family" (Proverbs 27: 26, 27)


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ANNIESADVENTURE
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1/25/14 3:25 P

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I noticed that Dad was struggling with his checking account and offered to help. Surprisingly, he seemed relieved. We added my name to his checking account. I would make out the checks and have him sign them, explaining what we were paying. I made notations on his copies of the bills and filed them the way he wanted. Eventually I had to take over the whole process when he was no longer able to sign his name. I still did a slight overview of our finances with him so he wouldn't worry.

Judy, you did an excellent post about the changing roles. I used to wonder when I became the parent without even knowing it was happening.

Edited by: ANNIESADVENTURE at: 1/27/2014 (04:04)

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ANGORA4
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1/1/14 1:07 A

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So impressed with all you are doing for them, very impressive. Dementia definitely complicates things, as would the poor vision. I'm sure the doctor is right, that you're the reason they are still at home. Good job.

They probably won't recognize how much you do, it's normal. I like your idea of trying to pay others to cover some of the jobs, great idea. We just do the best we can, come up with as many workable ideas as we can. We can't do everything, but we do what we can.

Don't feel guilty that you can't do it all. There is a limit to our strength and resources. Do what you can. You're already accomplishing so much, we're so proud of you and all you do for your parents.

It's a great idea to find others to fill in the gaps, hope you can find a way to make that work.

How are you doing?

Judy
"You can make clothes from the wool of your sheep. . .the goats will provide milk for you and your family" (Proverbs 27: 26, 27)


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CHANTENAY
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12/30/13 5:21 P

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I'll answer this a little at a time. I just told my mom that she IS getting a haircut. She got one about 6 weeks ago and doesn't understand that it wasn't just a one-time thing. It's tough because she used to be a nurse, director of nursing no less, and she is used to not only being my mother, but in charge in her professional life. She looks awful with her hair hanging down her back. Not only that, but she can't wash it. In the shower, she gets dizzy shutting her eyes even though she's sitting on a shower seat. But it pains her to lean over the kitchen sink while I wash it because she's had multiple back surgeries. Reasoning doesn't work because of her dementia. I finally told her last night that she needs a shorter cut that can be rinsed quickly and I already set up her hairdresser to come over and do it again. She accepted it!

Then I told dad, who has dementia also, that I'm not cutting her toenails anymore when they can afford to pay someone to do it. They act like the ball is still in their court when their options are limited. He is handling their money and I see signs of bungling. I told them it's not fair to make me do that stuff when someone else can. Then mom started cutting her own nails right away, then stopped, she said, until tomorrow when she could see better. She has macular degeneration and lost most of her sight from it. Her fingernails look like daggers. She says she'll cut them another time when I bring that up.

They have a CNA coming in to clean their apartment twice a month. I want them to pay her to do some personal cares while she's there. I don't mind helping them, but I'm getting too tired to do all of it. I cleaned both their CPAP machines last night, cooked tonight's dinner for them, and did dishes. On other trips, I take out the garbage, grocery shop, take them to the doctor (I had battles with dad over driving because he doesn't recognize he's a horror on a highway). I clean the bathroom in between visits, make phone calls, keep track of their appointments, organize their meds. But I want to stop at some of it.

They think they're managing just fine while overlooking how much I do. They don't figure anything out unless I get real blunt with them. Otherwise, like I said, they think they're calling the shots yet. Their doctor said the only reason they're still at home is me. I was doing their bills until dad decided "I'm not giving up control of that yet" so I don't know where the money is going. It takes him all week to do the bank statement. I know they have plenty of money to cover their care. I just wonder how the money is being appropriated. I could go on...you know.

"Your inner athlete is dying to play!" - Cory Everson

Change doesn't happen without struggle.


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ANGORA4
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12/30/13 1:22 P

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So glad you asked this question. This is the one that saved my life. While I had been going down to my mother's house every evening for ten years to make her a hot meal, clean, run errands, and entertain her, the time finally came when mom realized she was losing it mentally, and asked me to move in with her.

I already had a home and family and a farm to run in another county, but mom was already 93 and declining rapidly, we figured the stay would only last a few months, so I agreed. Once I moved in with her, the trouble began. This was her house, and she was used to the parent role. So, that's how she treated me. I felt like a bad little girl, constantly being put down by my mother. I was frustrated beyond bearing. Here I was, giving up my own life and home, to take care of one grumpy, bossy lady, and made to feel like I was the bad guy in the story.

For a year and half, things went from bad to worse, as dementia robbed by normally pleasant mother of her good nature. Fortunately, I found SparkPeople. Bless a member that recognized my frustration, and gave me the best advice of my life. She said that I had to recognize that the family relationship has reversed, my mother is now the one being cared for, and I needed to start behaving like a parent. That means that I needed to take control, and just plain do what needs done without guilt. Mom can only make me feel like a child if I allow it. I need to accept that the roles have reversed, and act accordingly. A good parent shouldn't whine when the child doesn't want to take their medicine, or wants to only eat candy, or gets nasty. A good parent acts, not reacts.

When my mother would verbally attack my son, I could calmly stand up for my son, say that it wasn't an appropriate thing to say and it would not be tolerated, and take my son into my room to read a story or play a game. That showed my son that he was important to me, and turned the unfortunate situation into something positive. It required no raised voices, no 'scene', no frustration--only a simple pre-planned action. In time, it greatly reduced those inappropriate outbursts.

When mom would behave like a child, I learned coping techniques to help me navigate the situation calmly and effectively. Check the Support Forum archives here for some of the things we found that work.

As a caregiver, you are now the parent. Some parents relinquish their parenting role more gracefully than others. Some fight it tooth and nail to the end. They may wish to be the boss, even when they are no longer able to make rational decisions. How hard they fight this may greatly affect your frustration level, as there is only so much we can do as caregivers.

The real key is the mental shift on your end. They can only bully you, shame you, and lord their parenting role over you if you allow it. You need to recognize that things have changed, and whether they are willing to accept it or not, you need to act accordingly. Often, they greatly resent the changes in their bodies and minds that have robbed them of their independence. On the inside, they still feel young and in control. When their body doesn't cooperate, they get frustrated, and they may take that frustration out on you.

You will need to do the things that need done, to the best of your ability. You can't make them happy, you can't change back time, you can't give them what they really want, which is to be young and strong and healthy and in charge of their own lives again. What you can do is give them support, and love, and patience, and understanding.

Their frustration often results in them lashing out at you. Understand that this is the disease, not the person. You don't need to take it personally. You wouldn't get angry at a person with heart disease for not being able to do heavy work, or at a person with a broken leg for having trouble getting around. The difficulties of aging fall into this same category. Dementia is a common companion to aging, and dementia causes personality changes, often turning pleasant people into touchy dragons. It's the disease, not the person, it's a normal part of the progression, and just like a cast on a broken bone, you learn to deal with it. It's not personal, so don't take the tirades personally.

As a caregiver, you'll often need to get legal help with power of attorney documents for both legal and medical issues. This is essential, but scary for the parent who will feel scared and powerless. Try to make this as painless as you can, it needs done early in the caregiving situation, while you still can, and before it is needed.

There will be financial decisions to be made, and this may require changes in lifestyle, as medical expenses take up more and more of the budget. This will be hard, try to find ways to let the parent still feel in control, while making sure the bills are really being paid. Often, seniors 'forget' about the bills, piling them in a drawer without dealing with them, even if they were once diligent about paying them promptly. Be aware of this, and prepare to be included on their checking and savings accounts, so you can take over paying the bills when the time comes.

Pills may not longer be properly doses, it took us quite a while before we discovered mom was poisoning herself with aspirin, not remembering that she just took two pills, and taking two more, and two more. . . We needed to switch to tiny bottles which we refilled as needed, and kept them out of her easy reach. That was a huge help. You may need to monitor medications to be sure they are being taken properly and on time.

Meals may be another issue, they may not be feeding themselves properly, skipping nutritious meals for sweet treats instead. Also, as we age, we don't absorb nutrients as well as we used to, so you may find liquid vitamin supplements helpful (they gave my mom an amazing boost, she lasted seven more years!)

Just as with children, you won't suddenly change them from treats to Brussels's sprouts. But you can substitute healthier options. If caffeine is a problem, you can switch them from full caffeine to lower caffeine options, often without their notice. Whole grains can be substituted for processed grains, etc.

So yes, there definitely is a role change. As they become less able to care for themselves, you need to pick up the slack. You may need to decide it's time to consult a doctor, or deal with financial issues, or make decisions on repairs/replacement issues. It's hard, as it's an end of an era. There will be grieving, as the parents you may have depended upon now depend on you. That emotional and physical safety net is dissolving, and it's hard to accept the change sometimes. But, this is the way of life as we, too, are progressing on the path of life. We are marching on to our own graduation.

This is another of the mileposts of life, the passing of the baton. Does anyone have any suggestions to make this transition easier?

CHANTANAY, how is this changing of roles working out in your life?

Judy
"You can make clothes from the wool of your sheep. . .the goats will provide milk for you and your family" (Proverbs 27: 26, 27)


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CHANTENAY
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12/29/13 2:48 P

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Did you ever notice at what point you had crossed over from being your parent's child, and having to address them as their parent? I am getting there now. How did you handle it?

"Your inner athlete is dying to play!" - Cory Everson

Change doesn't happen without struggle.


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