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Frustrated Over This Long Haul (And I Don't Mean Weight Loss)

Saturday, November 09, 2013

This blog is about my parents and my caregiving role for two people with dementia. It was established that my mom has dementia, not Alzheimer's, although she is on Alzheimer's meds. She was born two months premature in a log cabin during the Great Depression, fed milk straight from a cow right at birth (has kidney failure likely caused by diuretics for hypertension but I wonder if the milk at such a young age harmed them), and has had encephalitis, congestive heart failure (CHF) and COPD. The last two are the biggest culprits.

My dad has vascular dementia from multiple tiny strokes over time. I am sharing their story to give people more impetus to take care of themselves. It is extremely important to exercise and eat properly. The effects of good diet and fitness are far reaching!

My parents are very sweet but extremely uncooperative. They are in denial and lack insight into their situation. So, everything that my daughter and I suggest is always a "No."

Driving. My mom is almost completely blind from macular degeneration. She knows she is not supposed to drive. She has said she won't. Yet, over Labor Day she took her older sister on a joy ride through town at 9:00 in the morning. Dad was in bed, so they slipped out. When I talked to her about it after my aunt went home, she said, "Oh, it was fine! It was night, and all the lights were on." I said, "Mom, it was broad daylight, a sunny day at 9:00 in the morning!" She looked rather puzzled and disturbed to hear that and promised she would never drive again.

Last summer, I was in the back seat of my parent's car while my dad was driving. Mom was in the front seat on the passenger side. We had just left a fast food joint, driving on a highway, when my dad told my mom to take the wheel while he took the wrapper off his burger. I sat there with my eyes bugged out, protesting, while mom said, "Don't worry, I can see the line on the road," speaking of the fog line at the shoulder. I can't believe my dad would do that. Last summer, I still wasn't yet getting forceful about driving, but after that I began my campaign to get them off the road.

This August, my mom had a doctor appointment 30 miles from their home that necessitated driving on a 4-lane expressway. I was dead set that dad would not drive her. Knowing how insistent he is that he can still drive, I arrived at their apartment two hours before they were to leave, even though he made it perfectly clear he was perfectly capable of making the drive and I was not invited. Why did I arrive two hours early? Because I knew it would take that long to wear him down with my presence and firm determination. I told him I'm going along and not in the back seat. I parked myself in a recliner, and stayed there. Finally, he said, as the time neared to leave, that he'd been up since 4:30 a.m. and was tired, maybe I should drive her and he'd stay home. It was 2:00 p.m. at this point. Oh, sleep deprived with dementia! That is just GREAT. Even though he knows we have to drive through major road construction, the only thing that made him give it up was my unrelenting interference. If I hadn't been there, he'd have taken her. When I say major road construction, I mean I counted 22 cranes in a two-mile stretch, where the lanes are very narrow, no shoulder, swerving to the right and left (with signs that say STAY IN LANE), workers too close for my comfort, and speed limit still 55 m.p.h.! I couldn't stand the idea of him out there with all those other people driving near him, and working around there. When I called him after the appointment to ask what he'd like us to bring home for dinner from takeout, he was in bed sleeping. We woke him up.

Those are but a few examples.

I finally got them to hire housekeeping help, but they will only accept two hours every other week. They won't let anyone come in for anything else. I have to cut my mom's toenails, clean their CPAP machines, take out garbage, do dishes, get groceries (dad does some shopping), clean the refrigerator because they let food spoil and think it's still good to eat and wonder why they have diarrhea. I was doing their meds, but my daughter took that over about two weeks ago. That takes an hour or more, especially for calling refills in as we do it. I do it immediately so it's not forgotten. Keeping inventory of their meds is a big deal. Running out is serious business.

I got county social workers to help, but they aren't responding to their advice either. They recommended more in-home help. They can go to assisted living or a nursing home. All refused. Half the time when I want to clip mom's toenails, she refuses. She won't shower. Says she will next week. Says sponge bathing is enough. I finally got them preloaded bathing wet wipes and they do like that. Mom smells better. Dad was fine before, but he uses them too because it's easier.

I could go on! But this gives you an idea of the life of a caregiver. And I live 20 miles away. I can't just pop over for a few things here and there. I incorporate my own grocery shopping as long as I have to go for them, so it's a big affair. I like the cold weather so my food will stay fresh in the trunk. Before, I had to shop for us after I left their apartment on the way home, and on the way to their apartment for them. Now I can do it all together.

The only exercise I can get in now is housework, yard work, and taking the dog for potty walks. All things I have to do anyway. I did fit in a few exercise DVDs the past month, but it's really not feasible to count on that. I love doing them, though. I bought a new set, but it will have to wait.

My time is not my own. This may drag on for years. I've been told by someone who is very knowledgeable about these things that I will die before they do. For several months, my daughter didn't help at all, with her huge garden that they rely on to cut their food bills. Now she's kicking in again, with her canning and food preserving done. What a relief. She said I have to work on them to get more help in the house. If they don't listen to me, they certainly won't listen to her, so she relies on me to do the talking. They can afford it, they just resist because they're trying to hold on to their independence. It must be sad and scary losing the life they had. They seem to be trying to prove to themselves and probably the rest of the world that everything is okay.

My weight loss goals may be just a dream for some time, probably years. I don't want them in a nursing home. I want them home, just want them to get more help so my daughter and I don't collapse. They said last week that they didn't ask us to do anything for them, it's all voluntary, we can stop, we should stop, just don't help, they'll be fine. Are you kidding, mom and dad? Like my daughter said, how can we not keep doing this when the work is just screaming into our face every time we go over there? I told them last night that when I come, I want to visit. I don't want it to be a matter of doing chores. It kind of kills the joy. They are so sweet while denying our requests. They obviously don't understand what it's doing to us.

This is only a little start. It doesn't end here. My mom fell twice in one week. Landed in the hospital the first time. This was about two weeks ago. It was a battle convincing them to get a medical alert system. Even after my mom fell in the bathroom two months ago and laid on the floor for five hours until my dad woke up in the morning. She said it was no problem. She didn't mind. :O

They are not listening to social workers or anyone else. I will not declare them incompetent because it will hurt them more than it will help me. At some point that will change. But I insist on making this as ethical an endeavor as possible in every way. They helped so many people through the years and were good parents to us, the best they could be. They helped my sister and I as much as they could after we were adults. So I'm doing my best to help them.

My mom's hair, the clutter in their apartment, the big water filter apparatus that they can't keep up but keep using (it smelled like dead fish so I had to get filters and clean the thing out, another new job), mom putting 4 gallons of spring water through her CPAP instead of distilled water like you're supposed to (found that out and they told some whoppers to explain that away). Mom's fingernails. I finally was able to clip them in the emergency room after she fell two weeks ago because she didn't know what was going on. They were like daggers before and she refused to let me cut them. It goes on and on. Rotating the inventory in their cupboards after I found three cans of salmon in the cupboard and SEVEN more in the closet across the hall that goes with their apartment. That is only one item. I found three open jars of peanut butter, two of which were expired. Etc, etc.

But I know that I'll get some comfort after they're gone knowing I did the best I could for them.

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Member Comments About This Blog Post
    I'm sorry you are going through all of this. I know it's got to be really hard, both physically and emotionally.

    I don't think you could live with yourself though if you just didn't do the work and let them suffer the consequences. In my opinion that is something you do with younger people who are living lives they shouldn't be living, but it is different to treat older people that way. I know that leaves you stuck between a rock and a hard place though...

    Every person is different. Some older folks don't mind going into an assisted living facility. Some think they would really hate it, but when the time comes they don't find it so bad. And, then some know dang well they would hate losing their independence, and when their independence is finally taken away from them their spirit dies cause they feel like a lost caged animal. (I would absolutely be of the latter category, as has been all my family members that I know of...)

    I know this is going to be a long hard decision for you to make: when and if, and under what circumstances. I pray for you to have the strength and calmness of spirit to do what you have to do when the time comes, or if you choose not to do anything and let circumstances take their toll. There is no right or wrong decision that any of us could put on you; there is only what is right and wrong for you - or even just living with things as they happen or as you decide, with no misgivings on your choices or what happens. (sorry this is so long)

    1557 days ago
  • HOLLYM48
    Wow, you do have your hands full. I can see why you are overwhelmed. I hope the situation changes and your parents can see that they need help and so do you.
    Good luck on your journey with your aging parents. You are a wonderful daughter that is there for them. Hugs to you!
    1558 days ago
    Poor you, I remember it well but my mam went into a care home willingly and enjoyed living there. The only hard bit was the waiting for a place, we were twentysix weeks when she was on a hospital ward which wasn't ideal. We were the ones who felt guilty about moving her out of her home, but she just wasn't safe!

    Please take everything you're offered, the more you do the more they'll take.

    The driving is really scary!
    I know it's not quite the same, but my mother-in-law put corned beef in a pop-up toaster and started a fire so we had to remove things from the house. She'd get really upset about it so in the end we decided to take off all the appliance plugs so things didn't work but the house didn't look bare and she seemed happy with that. We took her meals in every day.
    She eventually went into a care home and, like my mother, loved it once she'd got used to it...which didn't take long!

    We're the ones who don't want to put them in one, our conscience gets to us, but it really is the right place for them especially if they become a danger to themselves.
    Please don't make yourself ill.

    Hope you manage to sort things out, take care emoticon
    1562 days ago

    Comment edited on: 11/11/2013 5:25:49 PM
    1563 days ago
    My husband told me this week that if they said they don't want help, then don't help them. Let them live without help and face the consequences. It will be hard to watch, but may yield better results in the long run. I am their Power of Attorney for health care. Their doctor has talked to me about the situation. He understands and is experienced with geriatric issues. Everyone is pretty much just waiting for me to give up and start proceedings to declare them incompetent, or until something comes up that makes it imperative, such as a broken hip or a major stroke. The courthouse said they'll send the papers to the doctor whenever I say. I'm just waiting for the time when they either 1. admit their needs and agree to a nursing home (or at least more help in the home), or 2. declare incompetency when they are too far gone mentally to be emotionally affected by it.

    I'm playing it by ear to be as kind as possible while balancing their safety and the safety of other people in their midst. And always relying on the professionals for advice. This is an approach that is similar to what is called "watchful waiting" by doctors. I used to work in the health care field, but this experience of actually living with elder issues is new to me. I'm learning as I go.

    Thanks for your comments and advice. No, I am not offended by anything said, especially coming from people who are genuinely concerned.

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    1563 days ago

    Comment edited on: 11/10/2013 10:40:42 AM
    It's really unfortunate that when people are eligible to assist services, they choose not to because of the perception that they are losing their independence. I worked in aged care for many years and they will only get into a nursing home if they are eligible and if there are places. Home assist will help them if they are prepared to accept as much help as they are entitled to which they are not. The only other option which might be wise is a retirement village. I don't know what they are like where you are but I know all about them and over here the staff can take some of that burden and assist influence them to seek services - at least a lot of the concerning issues with them might end up at the office before they reach the family, where often they can be diffused. It is also the case that people who are not related can often have the most influence. I do believe that as people get older they are the last to know that they have changed - because they have changed they don't realise it so you are the one being annoying and micromanaging them probably as far as they are concerned and they can't see what all the fuss is about. It is best if they make choices whilst they can otherwise if they end up in hospital and not able to return to live independently the choice will be removed from them and that is a really sad thing to witness. Do you think they are playing on you in any way i.e. if you backed off would they want the home assist services to increase? You can also approach their doctors on the side - under the privacy act they can refuse to discuss their conditions with you, however you can approach the doctor out of concern for others when your father gets behind the wheel etc. You can give him an insight into what is really going on so that when he next sees them he has someone else's views etc. It's tough - it's really really tough and I feel for you. Something needs to be done as from witnessing first hand hundreds of situations of this type of scenario it is basically unsustainable for you. Culturally this would not be an issue for some countries because the child would likely move in and assume the caring role until the parents departed but in Australia extended family living is not our base culture. Lots to think about and I hope I haven't offended anyone with my opinions here. Talk care. emoticon
    1563 days ago
  • JACKIE542
    I do know how you feel, so many of the things you mentioned I went through with my mother, I could not imagine how much harder it must be to have both parents going through this. I am glad that your daughter is helping, sending many emoticon You are a very kind.
    1563 days ago

    Comment edited on: 11/9/2013 11:08:13 PM
  • JUNEAU2010
    I'm exhausted reading about all this. My goodness! I wish I had a magic wand and could help!
    1563 days ago
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