Dealing with the suffering from Dementia

[TonyK]

  On 3/4/2023 at 12:53 PM, NYRich72 said:

What shocked me the most was the number of patients who received either no visitors or only an occasional visit.

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My mom was in a facility 200 miles from me but my sister lived close so would visit her every week or two mostly to visit with the care people too because she knew them. My mom didn't recognize my sister most of the time and she would never remember she came to see her anyway. 

I didn't go see her because I wanted to remember the last time I saw her when she knew who I was. That was important to me as I witnessed a good friend who came back after visiting his mom and she had no idea who he was. He was devastated.

[NYLIBUD]

Well my father had a pretty crappy day,since i could really get him out of bed.Omg i need a vacation.I think i’m going to have to insist that he stays at my sister’s house,about an hour away,for just a couple of days.This is hard.And my stupid  brother is in Florida.Arrgggg?

[stitchdup]

  On 3/7/2023 at 4:23 AM, NYLIBUD said:

Well my father had a pretty crappy day,since i could really get him out of bed.Omg i need a vacation.I think i’m going to have to insist that he stays at my sister’s house,about an hour away,for just a couple of days.This is hard.And my stupid  brother is in Florida.Arrgggg?

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it may be better to get your sister to stay at yours for those couple of days. changes to his routine can speed up the effects of the disease and increase his confusion

[NYLIBUD]

  On 3/7/2023 at 5:55 AM, stitchdup said:

it may be better to get your sister to stay at yours for those couple of days. changes to his routine can speed up the effects of the disease and increase his confusion

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That’s definitely a possibility.I’ve just been catching myself yelling at him out of frustration..But then I stop because I know deep down,it’s not his fault in anyway.

[NYRich72]

  On 3/4/2023 at 1:43 PM, TonyK said:

My mom was in a facility 200 miles from me but my sister lived close so would visit her every week or two mostly to visit with the care people too because she knew them. My mom didn't recognize my sister most of the time and she would never remember she came to see her anyway. 

I didn't go see her because I wanted to remember the last time I saw her when she knew who I was. That was important to me as I witnessed a good friend who came back after visiting his mom and she had no idea who he was. He was devastated.

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I can't imagine anyone coming away from a visit to a loved one not being affected negatively by what they saw. I can certainly understand your reasoning as we would all like to remember our loved ones at their best.

One of the saddest things is that most dementia patients don't recognize people that they have know all their lives. When my mother-in-law was admitted to the home where her husband was already living she had not idea that he was her husband even though they had been married for something like 60 years. There were rare days that she recognized my wife but they became fewer and fewer as time went by. Oddly, she seemed to know who I was although she didn't remember my name.

She hung on for about 6 years and, as sad as it is to say, her passing was a blessing for all involved.

[NYRich72]

  On 3/7/2023 at 11:11 AM, NYLIBUD said:

That’s definitely a possibility.I’ve just been catching myself yelling at him out of frustration..But then I stop because I know deep down,it’s not his fault in anyway.

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No doubt about the frustration factor. My wife might just be the most patient person I've ever met and she lost that patience with her mom from time to time. It's nobody's fault and we just have to accept things for what they are and that's often not the easiest thing to do.

[stitchdup]

  On 3/7/2023 at 11:11 AM, NYLIBUD said:

That’s definitely a possibility.I’ve just been catching myself yelling at him out of frustration..But then I stop because I know deep down,it’s not his fault in anyway.

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I think thats the tougest part of it for family. We're so used to seeing these people as capable that we struggle to deal with it when they aren't. They are usually the people we turned to for advice so theres a sense of loss from that which people that haven't gone through it cant understand. In some ways it would be easier on us if there was some physical thing to remind us that they aren't well because again we'vw become accustomed to seeing them that we do forget sometimes.

[bobthehobbyguy]

  On 3/7/2023 at 11:11 AM, NYLIBUD said:

That’s definitely a possibility.I’ve just been catching myself yelling at him out of frustration..But then I stop because I know deep down,it’s not his fault in anyway.

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You definitely need to be able to have time to yourself. Caregiving is stressful. My dad had Parkinsons and my mom was his primary caregiver. She needed time for her self. The term is respite.  You have to take care of yourself. It is why you need to contact a support group for dementia caregivers so you can deal with the stress.

[NYLIBUD]

Yea again,my father is having a bad time.I mean yesterday my father had a doctor visit,we then had lunch,and stopped at my sister’s house for about an hour.He seemed just fine.But sometimes i think he gives my sister a BS act.Today,i couldn’t get him out of bed,except for about an hour to eat some soup.?‍♂️??

Edited March 11, 2023 by NYLIBUD

[Aaronw]

I went through this with my mother a few years ago. One thing that would have been nice to know that we didn't find out until it was too late is how rapidly it can progress.

She had been declining to the point we were starting to look into some sort of assisted care for her, but she was still able to live on her own with my brother or I checking in on her once or twice a month (basically one of us would check on her each week). She went into the hospital for a urinary tract infection, a fairly minor illness, but she rapidly declined from there. Went from being able to live alone with some concerns for us, to couldn't be left alone for a minute. My brother took her for a few days, but he lives alone and couldn't work since she had to be watched. We took her from him, and tried to keep her with us, since it is my wife and I plus our teenaged son so there were more eyes to watch her. That lasted about a week when we caught her trying to feed our 7 year old her meds like candy. We got her into a nearby assisted living facility that seemed nice and it was close so easy to pop in a few times a week to visit. Thankfully she had a good pension so we could afford the $5000 / month rent (1 bedroom apartment with caregivers and cafeteria), because we wouldn't have been able to.

At that point she would get confused, but she still knew my brother and I. This went on for about 6 months, and then one week she didn't know us anymore. She would sit right there face to face and tell us about her horrible sons who never visit her. My brother made the 2 hour drive a couple times a month and I was there several times a week, so that was a bit hard to take. I can't blame people who don't visit, what is the point they don't know you and you get to hear what a terrible person you are in the third person. Then she started to get violent, so we had to move her to another facility that could manage violent residents. 

All this time she was still considered legally competent because doctors are very reluctant to take away a persons rights. Thankfully she had put me on most of her finances before she completely lost it, so I could access her bank account to pay her bills but she had resisted getting a power of attorney so we could legally make decisions for her once she couldn't. It was extra fun when she was finally declared incompetent, but we still had to wait months for the courts to award me conservatorship, so several months of limbo. People yelling at me to do things I had no legal right to do. Nine months after we got her moved into the new, new place, she was dead. I probably burned 3 months sick leave over 18 months, taking her to doctors appointments, moving her (twice), having to deal with crisis after crisis. So glad I had saved up sick leave for years so I had it to use.

 

I learned a lot about dealing with dementia, almost all of it after the fact. One of the big ones being, it moves fast, they can literally be somewhat coherent one day, and then checked out the next. Another that would have been nice to know is the average life expectancy from diagnoses to death is 3 years. Sounds horrible to say, but after dealing with the dementia for 2+ years, getting the phone call that she had died was more relief than grief. She was 79, and she had many on her side of the family live into their 90s so I thought that was going to be my life for quite some time. The 2 years nearly killed us, I don't think I could have done 10.

Only advice I can share is be aware that it moves fast. Be aware that people you would think would be understanding and help you (courts, hospital, social workers) won't, most will dump the problems back on you. If you are lucky they may provide you with some literature that is about 6 months behind your current timeline.

 

This is important, get a power of attorney giving a family member the ability to take control, once they are deemed incompetent. If they will sign the documents while they still legally can, it will help so much once they decline beyond that point. If you can, get a will done at the same time, which will save you down the road. We dodged a bullet there as it was just my brother and I and she had listed us as beneficiaries on her savings account which was her the only thing of any significant value. If she had still owned a home or had other valuable assets we would have had months of additional legal wranglings.       

Take care of yourself. Get a family member to stay with him to give you a break when you need it. The stress is brutal, I contemplated giving up a few times, and if I didn't have a 7 year old that I want to see get bigger, I might not be here.

 

My condolences, this is an issue that gets far too little support. Good luck.

[Aaronw]

Just because I need a little levity after writing all that ...

  On 3/12/2023 at 6:57 AM, Aaronw said:

If you are lucky they may provide you with some literature that is about 6 months behind your current timeline.

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I can't tell you how many times I thought of this bit from The Wedding Singer after receiving less than timely help

 

 

 

Edited March 12, 2023 by Aaronw

[stitchdup]

I think someone needs to point out there are going to be times something funny happens and you might feel bad for laughing but dont. For example my friend colin passed away in december after less than a year of suffering. But back in august he was still colin, just very frail and easily confused by mundane tasks so had to be with someone all the time when he was awake. We had as many of his old honda bikes and both his corsair and newly finished simca at the show as we knew it would be his last. Anyway this was the day i realised just how unwell he was after we sat him in the sidecar of a 1920s bike. He managed to get into the sidecar easily but he just could not figure out how to get out again and it was starting to wind him up, so i just picked him up to lift him out which was shocking as he weighed much less than my 7 year old neice does. But this is where it gets kinda laughable. It was getting busy and colin was needing the toilet. I was the only man available to take him there as the disabled toilet was out of order so we had to use the gents. At first i tried him at the urinal but even if i helped more  than i like (i had to hold it for him) it just wasn't going to work so I took him into one of the very small cubicles. Now colin starts to giggle because he thinks its very funny that we both squeezed into this small cubicle. There was lots of just chatting to colin to keep him calm which at the time i thought nothing about. Anyway we get finished up after a struggle and there lots of lines like "colin you just turn around and i'll get in" and other lines that could be taken 2 ways. so we get out of the cubicle and there this soldier guy (the territorial army were manning the gates) trying his hardest not to make eye contact or get too close that must have wondered just what was happening in the cubicle when there was lots of laughter then 2 guys get out. For the rest of the day i caught the guy staring but i dont mind, he can think what he likes cos helping my friend was more important to me than what people i dont know think.

Another time that sticks in my head is wjen the queen died and charles was announced king. The news was on tv and referred to king charles so i said spaniel right after it. colin sat and laughed for nearly ten minutes at the idea of the king being a dog, then when he was almost calmed down I said "at least he has the ears for it" which set him of giggling again. It was the last time i saw him as the colin i knew and before long colin was gone and we were just nursing a shell of a human.

Its disease and illness like these that make me believe euthanasia should be allowed for sick humans too. These diseases dont just rob the sufferer off their memories and dignity, they steal from the family and friends too and the effects of that will be felt for years. It causes family arguements and opens divisions that can be difficult to fix as everybody involved is dealing with a very personal issue so stress levels are high and even a little arguement can develop into something much deeper and long lasting. If they were simple pets we would be allowed to euthanise because it is cruel not to yet we let people suffer for years.

 

[A modeler named mike]

Glad I found this. This has been my life for just a little over a year. My dad is a widower of 11 yrs. and lives alone at 98 yrs old up until last October. He had two back to back falls which sent him to the ER where he was diagnosed with an early stage of dementia. I retired early and pulled up stakes at my house and my life to become my dad's 24/7 caregiver. In the beginning of our adventure (as I like to refer to it) dad was forgetful, confused at times, got lost easily, appetite cut in half, he slept way more than normal and carried out his dreams as he would awaken.. He would slowly come to realize it was a dream but it was so real to him. I used to keep a diary of these occurrences but that became to daunting of a task itself. Fast forward to September of this year when Dad and I caught Covid. One day he had passed out on me at the breakfast table. 911 once again. Along with having Covid he had become dehydrated. That is a problem in itself. He is incontinent and doesn't like to drink much liquid. 2 days later they sent him home. Since then I have seem a rapid deterioration in him. He now lives to sleep! He needs help using the potty, bathing, needs to be told to brush his teeth, wash his hands and basic things we do with little thought. As for sleeping at night.. What's that? We get up every two to three hours to go pee tiny amounts of urine..? but during the day time he needs to be told to go potty. It by NO means is an easy job and has little to no rewarding words from your loved one you care for but you do it out of love and respect.

I feel and pray for all here that has or is dealing with this with a loved one. AaronW has some very good advice in his post above. Thanks 

[A modeler named mike]

Hello Ron..

Your last post has been awhile. I wish I could say I hope all is well but I know that's not realistic. I lost my dad to this horrific disease one month ago today. Everything you wrote I can relate to. Especially the getting frustrated and become angry saying things that won't help the situation. I wish I could take those words back but that's also not realistic. Now I have some guilt because of it. I feel lost even though I have a wife and my old life is waiting for me. Hang in there, keep your faith and remember what you're doing is not a task/job that just anyone can handle. Don't doubt yourself, be strong and when his journey is over just know you did the best you could do and your dad will look down and be very proud of you..?  Mike

[bobss396]

My late wife's brother has an early onset form that started when he was around 55. He has money and his wife keeps him REAL busy. My wife was showing signs before she had cancer. 

My stepmother (nobody liked her...) had a bad case, she was a classic sun-downer. Eventually she fried her brain with rampant diabetes and lasted maybe 3 months after that. My dad died 10 years ago at 96, he had most of his marbles to the end. BUT... like with a lot of elderly, move him out of familiar surroundings and he would go full looney-tunes until he adjusted.

I'm not the same following my near fatal heart attack of 2016. Just a little off, plus I take a bunch of medications that contribute to it.