I’m caring for my 92 year-old grandfather who has dementia. There is a lot going on surrounding whether he should be living independently given his increasingly limited abilities (he should not), and I am working with my family on that as best as I can. There are a lot of moving parts to this story, and to keep it from becoming overwhelming for me (and for you), I’d just like to tackle one specific area today where it seems I’m out of ideas.
Do you have any experience or advice for asking someone (with kindness) *why* they are making a given request for help? The blunt version of this question is “Are you asking me because you cannot do it yourself, or because you don’t feel like it and would rather I did the work for you?”
Gramps became used to my grandmother waiting on him, and he’s also used to getting his own way.
At the same time, he is (vaguely) aware that I have a disability that causes chronic pain and makes it difficult for me to stand for long periods. I do have to remind him of this frequently, but it is clear that he loves me and does not want me to suffer.
It seems he has gotten fairly lazy in the last few years, but I’m also noticing instances where he finds ways to cover up his inability to remember how to do some things (ex: prepare a meal, use the DVD player, things like that) by pretending he can’t be bothered or would rather do something else. His cognitive state also fluctuates greatly, depending on all the usual factors.
The requests to do things for him are getting *very* frequent, and I often can’t tell if he needs or just wants help. If I fulfill every request, I quickly start to burn out.
I need some suggestions on how to triage these requests! I’d also prefer to avoid making him sad or grumpy as much as reasonably possible (it is not pleasant in this house when he is grumpy, but I am not going to completely undo 92 years of other people letting him get away with that at this point!).
Thank you all very much for your time!
When my mother moved to AL near us, she managed the legal business of house-selling quite well without much help (at 82). She had been used to arranging her own transport to medical appointments, although she relied on friends to take her shopping as she won't use any technology to order things.
When she moved here I picked up a taxi card at the AL and gave it to her, thinking she would use them as she had at home. Her reply was: 'Why would I need a taxi firm when your husband can do it?' and over the last three years she has gradually stopped doing anything for herself: no cooking, no phone appointments, not paying her bills, not taking her own recycling to the bin store across the passage - she even makes us read her letters from utilities, etc. and do whatever is required. Now I know she is getting older and her cognitive abilities are maybe not as sharp as they were (we aren't sure if there is any dementia there - her mother and brother had it, so it's possible), but it does look suspiciously as though she decided when she moved here that we were going to be responsible for her life whether we liked it or not. It has caused me great emotional distress, as my mum and I have never been close (from my reading it would appear she is a covert narcissist).
My mum admits she is lazy and can't be bothered to do things, and we often just go along with her demands to avoid nasty comments, but we worry that we are enabling her to become less and less capable, which isn't really helping her. It is very hard to tell the difference between what she needs and what she wants.
We arranged for paid carers to come once a week to do basic chores for her and had to endure horrible emotional guilt-tripping scenes as a result, but these carers have kept her alive during coronavirus, so we hope she may be more accepting of them now!
If you are having problems with chronic pain, please take care of yourself. You can only care for others as long as you are able and feel well.
‘I’ll do it in the morning” is a good idea. Or ‘later on’, or ‘after you have done xxx’, or ‘when I’ve finished the chapter’. Another idea is to have something adequate to offer which is not as pleasant as he would like. Have a repeat stock of a particularly boring frozen meal in the freezer (and get another small freezer if your fridge isn’t big enough), and microwave them instead of making other meals for him. If he asks for a hot drink, make him a mug of hot water (which is actually surprisingly nice). You should be able to think of some more alternatives for things that you think he may well be able to do for himself if he wants to. You can say that it’s easier for you, or just say that this is good enough. After a while he should get the ‘do it yourself if you want it’ idea. The less attractive alternatives are in fact ‘good enough’, so this isn’t cruel, and it might help with triage.
Good luck with the rest of the family!
Over the years I learned that one of the first things to determine in helping someone really is how much physically that person can do for her or himself. It's much too easy, too simplistic and unrealistic to assume that our parents can do the same things we can; their physical limitations are so different than ours.
Maybe beat him to talking about a task. At noon, ask him if he can fix both of you a sandwich because your back is really hurting today.
You could also bring a basket of clothes to his area and ask if he can help you fold things. (Don't fix anything he folds in front of him, just let him do the work). Tell him your arm is really hurting today and you could use the help.
Some of the problem, as you say, may be he really can't remember how to do what he wants, but he doesn't want to tell you that. If it's the dvr, hand him the remote and say - Remember? You just have to push this button. If it is food prep, then reply - Come in to the kitchen so we can fix XX together.
It is easier and faster to just jump up and do for others, but you have to keep telling yourself every time you do a certain task - you are removing it from their ability to do it themselves. Think about a lift chair. Yesterday you could use your leg and arm muscles to stand. You got the chair and had a bad day and used the lift. Then began using the lift because it became habit..and easier. In a couple of weeks, you will lose the ability to push yourself up. Putting yourself closer and closer to losing all mobility.
I am 79 and everything works much slower, more painful, harder to do, not real steady, not sure of, how to figure out, etc. Plus for each day over that to your Gramps age it multiples and multiples. You most likely remember him when he was younger and think he should still be able to do those things. Plus add dementia to it and nothing is normal or should be expected. Nothing!!! Old age is an experience and dementia is a trip through many experiences!
With dementia you should not be surprised by anything, no more then with a very young child. Love Gramps and enjoy every minute of everyday.
Second, watch and observe.
Third, set limits.
Always, encourage and speak in a soft, kind voice.
You can break an action down into very small steps (..Stand up. Walk over here. Open this) and guide them through the task you want them to do.
Like children, it would be faster to do it yourself. But the advice we were given is to have them do as much as they can for as long as they can. So we looked at it like their therapy.
But it's not laziness. It's part of the disease. Can you get some help in, even if you are there too?
We has asked ourselves your question a million times. Finally we put it to the home health team. They assured us he was capable physically of doing a number of things that he wasn't doing for himself. So SIL asked him in front of them. The specific thing she called out was dressing himself. She lays his clothes out for him, and some times they sit there for days while he lives in the same shirt and changes his adult diaper when he goes to the bathroom. When the home health PT asked him why he didn't dress himself, he pointed the finger at SIL. Said that she only helped him get dressed if he had to leave the house. The PT asked him why he didn't get himself dressed. His answer was eye opening.
"Why should I do it when she can do it so much faster? Don't you think she should always do it for me?"
The PT was flabbergasted because he sounded so sure that she would agree with him. She told him no! That as long as you can do something for yourself, no matter how long it takes you to do it, you should do it. Because every task that you stop doing you eventually lose the ability to do. And that is how people completely lose any semblance of mobility and independence without even realizing it.
My advice, don't do it unless you are sure. Stand by if assistance is really needed. Leave the room but be nearby to listen in an emergency. Maybe provide him the tools to do whatever it is he is asking and walk away.
You mention that he was used to your grandmother waiting on him and used to getting his way. This is a slippery slope. We can barely get a handhold on the way down right now. Ask the dr if he is capable of certain activity. If the dr says he is, leave it alone. Let him do it. You do start to see where they really need help and where they just don't want to do something. Or even worse, can do it, but want someone else to do it for them, which sounds the same but is a whole other layer of controlling their world. You may find that he will try to wait you out. It depends on how deep the being used to being waited on goes. But the best you can probably do right now is just be blunt. You can be gently blunt if that works. We had to take the kid gloves off with FIL because he is also unfortunately a narcissist and will run his supply into the ground to get what he wants. So we have had to start with the tough love.
You have to do what works for you. But it is a fine line between helping them and enabling them.
Yesterday, I was describing some of his behaviours to my mother, who said, "Argh! He's been doing that as long as I can remember! Drove mum nuts." Me: "Huh. I had no idea. I thought that was a new thing." There seem to have been traits of OCPD (probably wouldn't have reached diagnosable threshold, there are now too many confounding factors for me to assess at this point).
Love the idea to place tools in front of him. That's actually gone well a couple of times lately and I can incorporate more of this daily.
You've got a good PT. Helping people help themselves is very different from doing everything for them. I'm seeing some beginning signs of depression in Gramps since he's lost much of his independence, and I do notice how satisfied he is when he completes a task for himself. He's been doing a lot of work in the garden over the last week, with absolutely no input from me! He's very proud of his vegetable patch.
I'll see how far we get with a few tasks around dinner prep today.
Thank you!
As my mother's dementia progressed, my poor dad would get frustrated in the same way you're getting frustrated. I finally told him that she's basically become a toddler again -- no filters and she can't do things even though she won't admit it .
You have the same issues. If you look at his behaviors as those of a small child (but not treat HIM like a child -- it's a fine line), then the stresses seem to diminish -- at least they did for me.
A friend once told me, "we start out in diapers, and we end in diapers." That was more true than either of us realized, as it's as much a metaphor as a reality.
In a perfect world, we'd become ever more like toddlers in that we'd state matter-of-factly and without shame, "I don't know how to do this. Help, please!"
Thank you :)
Decision making powers? Not you but no probs as you know what you can/can't do & the family know who they are.
You got this! (as they say).
Just watch out for 'Denial'... by the family decision makers. (That's where mine is bogged deep).
When the time to eventually hire care or move into a care setting does come - it will be those sticky folk you have to convince, not your Grandfather.
Best of luck 😀
The denial runs deep, though I have so far been able to erode some of it slowly and steadily, like an evening tide that comes in daily.
Today I was asked to provide evening medication reminders (read: monitor and administer medication, which will actually require at least an hour's work on most days because he resists when he notices people noticing he forgot). Also, I really don't have the mental bandwidth to remember one more thing. So I said no, flat out. The burden will fall on the sticky folk, as it should.
Sending you strength to to climb out of the bog. I wish I could remember how Indiana Jones did it! I don't think he had family members saying, "It will be much better if you just did one more thing..."
I was shocked when a social worker described my relative in this way. But I thought about it - it was true. Started a clearer look at the bigger picture.
The funny (? not really, but at times it is) thing about dementia is tomorrow he may wake up and prepare himself breakfast without a hitch.
I've got few illusions about what's going on here. I just need to keep reminding myself (like you did) to take a step back!
He is not being lazy or seeking attention. His brain is not working properly and it will continue to get worse.
With dementia at some point you are going to have to fulfill every request. And often the request will not be made. No more I have to go to the bathroom...you will be changing him, cleaning him.
No more I need a drink. He will not be able to verbalize his need for food or water.
He will get to the point where he will not be able to chew, he will not be able to swallow liquids unless they have been thickened.
It sound like the best place for gramps would be a Memory Care unit where his needs will be met.
Yes, I'm well acquainted with the stages of dementia both from my studies/work in psychiatry and from my experience with loved ones.
I have another grandmother who is at the stage of dementia that you describe. I'm grateful every day that he is not there yet himself! The decisions regarding his care are mostly in the hands of his daughters, and I have to work within my role as a family social worker who also happens to be the granddaughter. Fortunately, this also means that there are many things that are not my responsibility--including getting everyone off their butts to get him into memory care, or doing his bathroom/cleaning if it comes to that before they move him.
For now, I can only lead the horse to water! Haha
Cheers
"The blunt version of this question is “Are you asking me because you cannot do it yourself, or because you don’t feel like it and would rather I did the work for you?”"
Although he was used to being doted on by your grandmother and this may have some impact on what he is asking for, more than likely the dementia is a bigger factor in asking for assistance. Seemingly simple tasks like operating the DVD player become a huge challenge for those with dementia. It looks easy, you've done it before, but it really comes down to not being able to follow simple instructions or steps to do what they used to be able to do. My mother was living alone, and it wasn't until we took the car away and I had to help her shop that I realized she was no longer cooking for herself. This was someone who always made elaborate meals, and even decorated cakes for family weddings, etc. She was still buying the ingredients to make meals, but I would find them still in the freezer or shriveled up in the fridge, because she was using packaged items and frozen dinners.
While it may appear to be laziness, it likely isn't. Covering up by wanting to do something else or "pretending" he just can't be bothered is more of a simple way to explain away his inability to do whatever it is. He certainly won't understand why, but needs to somehow reason with it and this is the best he can do! His "memories" or abilities to be able to do something certainly can fluctuate - my mother sometimes has "flashes" of memories, but it doesn't mean she is selectively forgetting or passing things off. It just means once in a while the brain manages to make that old "connection."
His needs ARE going to increase, which is why the family needs to get together and make a plan SOONER not later! As he forgets more and more how to do simple tasks, he will become more reliant on you. He could also just be reacting to what his brain tells him he needs, which is relayed to you.
If he hasn't been seen by a doc in a while, he should get a full assessment, including blood work and urine test. UTIs will often present in bizarre ways (mom's first in MC resulted in severe sun-downing, and since then show up as night time bed wetting! before or early dementia, she was not her usual independent self due to low potassium) If everything is good medically, perhaps a low dose anti-anxiety would help? It's just enough to take the edge off but not leave him dopey. Some people know something is off but don't understand what it is and it can make them anxious and they use various techniques to reason with themselves and to try to make sense of an ever more confusing world around them.
In order to "triage" his requests, try to list the ones that would be most important for his well being. Thirst, hunger, bathroom would be the top 3. If you can keep beverages and snacks handy, and make a point of helping him with getting to the bathroom on a regular schedule, that could reduce you running around to manage these tasks. Other requests could possibly be managed by deferring them for a while and see if he mentions them again. Keep the deferred time vague, like soon, in a little while or next time I'm up. If you feel the request is not critical or really unnecessary, try deflection, distract him with something else. Sometimes this works to get his mind off whatever it was, at least temporarily.
You're right that his living situation is of concern to me. Fortunately/unfortunately (depending on how you look at it) the power to make those decisions is not in my hands as his granddaughter.
...That is also a can of worms I don't wish to open here at this time, haha!
As I said in my question, I'm absolutely not expecting him to remember how to do complex things like operate the DVD player.
There have been some great suggestions so far as to how I can help preserve his independence and my physical well-being by helping him figure out what he is capable of doing! Luckily, there is still lots he can do.
With dementia, their brain just stops being able to process info and get the body on board to get things done. He may not be able to verbalize a lot or even know why he's not able to do it. I would watch my LO try for 10 minutes to get into a car. Her limbs worked, but, they didn't work right. People appear to having working limbs, but, the brain signals don'e work and they may not be able to get the hand to the face or foot one step ahead.
I focused on making my LO as content as possible. Everything she said was right and her every request honored. (Wink, Wink). Well, within reason. She had so little control over her self, her surroundings and her life. I've tried to help her keep her dignity. As they progress with dementia, eventually ever single thing has to be done for them.
Are you volunteering to convince him and my family that caregivers should be hired? I'll DM you our phone number! :p
Jokes aside, there are lots of things he asks me to do where it turns out he is perfectly capable. It does no service to an elderly person to do for them when they can do for themselves as it robs them of their agency and independence even further!
What I'm thinking though is that some of these requests, especially those requiring steps (such as using the DVD player) are ones in which he's forgotten those steps and can't recall. From my experience, those sequential actions are often early clues of memory difficulties.
Telling someone isn't the same as writing very, very specific instructions.
You could also say something to the effect that your disabilities are really bothering you at that time, and could you discuss what he needs and work out a way that you can accomplish what he needs together? It might not be what you want, but it saves him from the embarrassment of admitting that he can't remember, or physically can't do something. And it could even be a bonding activity.
You can also set aside a certain amount of time to get done what he wants, then no more chores until the next respite time.
Some of his decline is in areas of social awareness and empathy/emotional intelligence. We've talked about my limitations at length, but I do probably just need to remind him more often in the moment! Otherwise it just does not cross his mind to consider it.
Also thank you for the reminder to set aside a certain amount of time for these tasks. Sometimes that will mean "Sure, I'll do it in the morning!" for less urgent things. I do find that many things seem to just "get done" before I get around to them, if I delay.
Thank you again!