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FortMyersSteve Asked May 2020

Suggestions re grieving and cognitively challenged widower?

My Dad is 90. He has partial cognitive disorder - struggles with names and gets confused about things. For example, yesterday, he told me the car my mom used to drive (which is leased from a car dealer) "came with the independent living home" he lives in. Ok, so he was correct they don't own it, just had the owner wrong and a bit odd). That kind of level of disorder. He also beats himself up a lot about forgetting things.


He tries to write everything significant down (because of his bad memory). But I'm not sure his filter on what's significant is strict enough. He was married to my Mom, also 90, for 67 years. Mom died from stroke May 7, 2020. I'm calling my dad daily, and drive down there once every 4-5 days. I'm in Fort Myers, he is in Naples. I don't feel like my calls have any positive effect on his mood, which is understandably depressed. He gets tired after a while and wants to get off the phone. I have 3 siblings, and know they are also calling or Skyping. But they are spread out around the country and mostly can't visit now because of COVID-19. My sister is probably going to drive by car from Philadelphia in a couple of weeks, thank God because he'll let her clear out my mothers clothes from the double bed, something he didn't want me to do. Dad has the same caregiver 12 hours per day 6 days per week, who is a wonderful man. He has other care so 24 hours someone is there. He's not in any physical danger.


He uses a walker and has various aches and pains so marathon running is out of the question. He even has declined to go fishing with me in my boat, though I think once we got him into it, he could sit comfortably.


This is a guy who was once very smart, comes from a line of unversity professors. But he had virtually no hobbies. I ask what he plans for the day and he says he wants to work straightening out files in his office. I have been trying to dissuade him from that process, or streamlime if, or delegate this project, or just lock the office door and forget it, for years, with no success. He had a reasonably successful career, is not poor, and should be kicking back and enjoying the golden years. But he's full of remorse, anxiety, and above all this sense that he has things he "has to do." I remind him that he already did a lot in his life, doesn't "have" to do anything, and ask what he "wants to do," but I don't get through.


What more can I do for him?

Riley2166 May 2020
Love him and allow him to do what he thinks he should be doing. It will help his anxiety and make him more comfortable. Just look out for him to care for him and that will help you too.

lealonnie1 May 2020
My condolences on the loss of your mother 2 weeks ago. And to your poor father who's lost his wife! He must be lost and devastated without her after a lifetime of being together.

That said, I'm not sure you're understanding either the grief process or how dementia presents itself. I wonder about you saying he has a 'partial cognitive disorder'.......? Dementia is what it is and is different ALL the time. He can have good days and bad days, good weeks and bad weeks. He can have days where he won't remember what he had for breakfast but can tell you who slighted him 50 years ago, down to the minute details. It's never the same disease on a day-to-day basis, that is the ONLY thing you can count on. Dementia brings with it a variety of anxiety related feelings.........like there's 'something he has to do' or 'something he's forgetting'.......which is frustrating b/c he won't be able to put his finger on exactly WHAT he's forgetting or WHAT needs doing. Just that there are 'papers that need his attention.' At 90, my father called me one day and said something to the effect that 'the papers were driving him crazy.' I drove over to his apartment and took them all away, letting him know that I'd be handling them from there on out. He felt better about 'the papers' in general, but would still ask about them from time to time. I had two accordion files full of his 'papers' and would remind him that they were safe and sound in my study at home. Just keep an eye and an ear out for your father's anxiety regarding 'straightening out the files in his office' is concerned. If/when he reaches the point where 'the papers are driving him crazy', then you'll know you need to step in and remove them. Take them home with you for safe keeping, etc. He'll need a POA appointed to take over the finances at some point, if it hasn't been arranged as yet.

As far as getting details mixed up about your mom's car, etc., that also goes with the territory where dementia is concerned. Things get muddled in their heads, so then they make up stories to support what they believe to be true. Know what I mean? So expect more of this behavior from your dad. Confabulation is common with dementia, as is mixing up facts and forgetting A LOT of things in general. Look out for him forgetting or not knowing what day of the week it is. That is VERY common, and something I'm constantly dealing with with my mother who's 93. She's continually asking what day it is, in spite of the fact that I bought her an Alzheimer's clock which states the day, date, and time of day in big bright letters.

Your father is grieving, and as such, isn't interested in going fishing or in developing a hobby as you would like him to do. Again, he's lost and confused.....partly from his brain deficit and partly from the huge loss of his wife. You really cannot expect him to do much of anything right now except to just 'be'. Let him alone. As long as he's eating and sleeping, he's good. If he stops doing either one, get him to the doctor to be seen for depression. "Kicking back" is something a person who's happy does. Not something a man who's trying his best to just FUNCTION every day can possibly do! I think you are just unrealistic in your expectations of him in general. Keep in close contact with his care givers to get their feedback on what's happening with him day to day. If they notice he's not eating or sleeping well, or not functioning in general, then he'll need to see his PCP for evaluation.

These aren't his 'golden years', my friend. The gold has tarnished; he's lost his other half and now nothing feels right. Let him find his way out of the fog he's in right now and realize it may be a long, slow, and painful process for a very old man. Life can't just 'go on as usual', as if nothing has changed here. EVERYTHING has changed, sadly.

Wishing you (and your father) the very best of luck in a difficult situation.
FortMyersSteve May 2020
Thank you.

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renoir May 2020
My sympathies on the loss of your mother. Your father is very fragile right now, handle him with abounding love and care and understanding. To relieve his anxieties, I would not make corrections of his memory or point it out that he is wrong. That causes further distress. Just nod and say "Ok, good to know, we will sort it all out. Do not worry. All will be OK." and "If you want to work on projects, go right ahead." I would be very agreeable for his peace of mind and out of kindness. Many seniors need to maintain a sense of usefulness, even if the activity doesn't seem useful to us. It is VERY useful to them. And when he's done sorting through things... "That's great, dad. Good to get a look at things and organize." My mom is 90 and has dementia. She enjoys folding laundry on days she can. And other days she just ruffles through the laundry, making more of a mess but I let her be. Each day her ability differs a bit from the last, for better or worse. My mom likes sorting through greeting cards she receives from family as well. Or we listen to her favorite songs, music is great therapy. I have her stir batter of items I am baking when she is up for it. Other days we play cards or just do math with playing cards. I hope your dad gets enough mental stimulation to keep him from ruminating and getting depressive. What are caregivers doing with him as social interaction? Can he do any exercises? Wondering what his daily schedule is like. Please keep making daily phone calls, it truly does matter. Good luck & take care~

nature73 May 2020
Not much to offer in the way of advice - just commiseration. My 94-year-old father worked his whole life. He was very intelligent for no more formal education than he had & we loved his dry sense of humor. His dementia came on abruptly & it's hard because he knows something is wrong. My mom passed away in 2018 after 67 years of marriage & sometimes he remembers that she has died, sometimes not. He had no hobbies either & does not want to participate in "childish" games. And to make matters worse, he is legally blind so many activities are out of the question. He is in Memory Care now & they seem to be taking good care of him - hard to determine since I can't go inside. It hurts to see a man like him in such a state & I question every day if I've done the right thing for him. I try to remember that his short-term memory is so poor that any answer or reassurance I give him is very soon forgotten. Medications have helped his anxiety & agitation. Perhaps that could be a consideration for your dad.

Llamalover47 May 2020
FortMyersSteve: Unless "the files in the office" are of extreme validity/importance, what harm is it if he riffles and sorts through them? It may restore his "Sense of Purpose." Bear in mind, he is a very recent widower. Prayers sent to you, sir.

Edith167 May 2020
I am sorry about the loss of your mom. Everyone else has given good advice; I'm chiming in only to say my dad was the same. He held an intellectually challenging job for many years, and until the day he died he filled his time reading, studying, organizing papers, and so on. He did get frustrated in his final years because his short-term memory and ability to follow through were declining, but I think he would have felt worse if he wasn't doing any "work." I suspect your dad too may not be a kick-back kind of guy!
FortMyersSteve May 2020
Thank you.
RedVanAnnie May 2020
While grieving, concentration and patience vanish even without any cognitive decline. Your father is not likely to be able to choose and accomplish any particular task by himself for a few months.
When he says he has "things to do" you can ask him to choose three or four of those things and write them down. Decide together which task to do first. Then for that specific "To Do" item, break the task down to small steps. Prioritize those steps and "assign" him the first step for that day. Maybe it is just to find a given file folder. Another step might be to go through that one folder for papers to keep or to file or to shred. That's enough for that day. Another day, another folder or step one of some other task.
You might also help your father make a list or a chart of what he does do that day. Even getting out of bed and putting on shoes is doing something. just being able to say "I put on my shoes" or "I washed my dishes" is encouraging. Help him appreciate each small step or task he does each day.

IsntEasy May 2020
“Things to do” is a state of being that everyone needs, whether retired or not. Your dad may be craving a sense of purpose in his life. You hit the nail on the head when you mentioned he has no hobbies. His purpose was his job, no matter how long ago it was, and his role as your mother’s husband, which he sadly just lost. He is rudderless now.

I would say that he’s a perfect candidate for an independent living apartment and all the social engagement that comes with that. But, depending upon the quarantine situation where he lives, that may not be an option.

I’d actually encourage him to take on a home project like straightening out his office. The problem is, dementia robs most people of their ability to plan tasks. Without a LOT of guidance, he’ll probably just stare at the office and not be able to get on with the first step (that may be what he’s doing). Do you know his home well enough to direct him on a task? Is there something he can do by ‘muscle memory’ (not much thought required)? Women in memory care often get great satisfaction out of folding towels, for example. Your dad’s cognition deficits are not that far along, but maybe you can think of a rewarding task that he can do by drawing on habit. It could be writing of some kind; making lists or writing notes to family. My dad, who never did a puzzle of any kind as long as I’ve known him, now spends at least an hour a day doing word search puzzles.

Taarna May 2020
Many folks with cognitive problems "worry," especially when they are aware they are forgetting things. Having a book where he can write everything down and refer to may be his best help. I would get a notebook with the brightest color possible so it stands out in every room - so the caregiver can find it wherever he sets it down. When he "remembers" something that is important, let him write it down. You may also wish to have a section with all the important data and enough details so he can see that it is already in his book.
FortMyersSteve May 2020
Thank you.
dogparkmomma May 2020
His anxiety may well be part of his dementia. My FIL had vascular dementia, which presented as issues with problem solving, decision making, planning and implementing activity. He could still converse and seemed fine to most people until they talked to him for a while. He did an excellent job of hiding his issues. Your father's reluctance to do things they might once have enjoyed is an indication of this. He may not be able to organize the actions needed to initiate "going thru his papers" due to his disorganized thinking. He does not know what he wants to do; the man your father was is no longer the same and the death of his wife has further made him anxious and confused. He cannot plan for the day. I have not ever watched Teepa Snow's videos but they might help you and your siblings understand more of what is going on inside of his head. Even talking on the phone for more than a few minutes would be very difficult as he tries to keep it together. I know he has companionship 24/7 but he might do better in an assisted living environment where the whole day is planned for him. If he never had hobbies, he won't start them now and even those with hobbies are usually no longer able to manage the activity steps needed without help. I don't mean this in a critical way but you calling him and asking him what he has planned for the day, and trying to lift his mood and tell him to enjoy his golden years, is not helping and probably creating more stress for him. You are trying to reassure yourself, which is understandable as you are really grieving the loss of both of your parents as well.

If his paperwork seems to be the source of his stress, perhaps you could sit with him and go thru it; it might be helpful as you can get him to tell you about some of it while he still can. I know this is really awful for you and your family; this smart, professional man turning back into a child is so painful. You have a constant knot in your stomach over this. We just went thru this with my FIL; his wife of 70 years died 7 months ago. They have already moved to memory care but it was difficult to watch his decline.
A neuropsych evaluation which will involve some "testing" to help determine what his deficit areas are, might be helpful to help pinpoint what is going on in his head. And give you all a better picture. You can suggest it as an evaluation to see if there are things that can be done to help him.

Grandma1954 May 2020
What is the down side in letting him straighten out the files in his office? Are the files of any importance? What are you going to do with them? If this is a project that will keep him occupied for a while let him go for it. If you get a few filing boxes so he can sort and file papers that would keep him busy for a while. Eventually he will tire of it and go on to something else.
If he has worked his whole life "kicking back and enjoying his golden years" will feel like either wasting time or slacking off neither one of which he was raised to do. And in my opinion he should have "kicked back and enjoyed his golden years" 30 years ago! We all wait until it is to late to truly enjoy ourselves.
If you can search for a piece written by Robert J Hastings called The Station great advice in that piece...

By the way the phone calls..My Husband did not like using the phone as his dementia increased, I think if he could not see a face with the voice it threw him off and he became unsure of who he was talking to. He probably reacts differently to the other calls because he can see a face.

As far as removing clothing it might be a bit soon, but if you can say that you want to take a few things to be cleaned and will return them that might be easier for him to handle. I would not get rid of items though, box them and keep them for a while in case he asks for something.

If he is writing you might want to ask him to write the story about how he and your mom met so you have that as part of family history. And any other family lore.

As far as grieving...let him talk, listen to him and cry with him. Talk about your mom with him. Let him grieve. His pain is still raw, just as yours still is.
((hugs))
FortMyersSteve May 2020
That was a very kind and insightful answer. Thank you so much for taking the time.

Steve

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