Acceptance Of Dementia Care Of Elderly Parent Requiring Nursing Home Care.

[Powder]

Whatever happens, I think it's wonderful that you both care so much about him. It would be so nice if everyone were so loved even when going through end of life. I agree with @Junebug about his picking up things. I felt that with someone toward the end, my wonderful grandfather. It was as if he was attuned to the life themes at work in people around him, and not the "shared reality" around.

Even while sedated the day after he attacked a male nurse and not being able to eat anything but thickened liquids, my grandpa looked at me when I visited him. He didn't fully recognize me but he said one word and that word still haunts me to this day. It was like he was reading my soul, not focusing on the particulars of "who, what, when, where."

My wonderful grandpa would never attack people; he was very gentle and tolerant his whole life. I suppose he felt the need to protect himself, and because he was abandoned by his father and put in an orphanage, the eldest of three young boys, he was the protector of them all. I think that it's possible that unresolved traumas are played out with nobody consciously guarding the gate. I also think he may have picked up something he didn't like from someone there. I agree they can't help it.

Moving stuff around sounds like an image of confusion and frustration with his own mind. I bet it feels that way for him, like "where did they put my thoughts? Where is my mind?" Poor guy.

Of course you can't be alone with him if he's too much to handle and meds and all. My grandpa had to be sedated after the attack until he was too weak to do so. His wife couldn't be alone with him in that state either.

Frankly, it's just so hard to watch someone unravel, no matter what the cause, and to know it will end them fairly soon. I'm sorry you and your partner have to suffer through this. I think a lot of you for your compassion.

 

[Deleted member 12723]

There is so many elder care for elderly people with dementia online. I used to belong to two groups and the support was so validating and helpful. You are not alone in this situation.

Also you could google it online for books for people with dementia and the caregivers.

I am sure this is the new epidemic for our age. It is happening to so many people.

You are doing so many wonderful things but it is so insidious to deal with on a daily basis and so depressing. Being in a group of people also dealing with the same thing has much wisdom and comfort and ideas on how to deal and manage the situations that come up.

I remember being at the hospital one time, and my husband decided to run away from me because he did not want to go and see a doctor for an appointment for his other diseases.

He took off and I had to run after him and I felt so alone and helpless and powerless and most of all scared. I finally somehow caught up with him and he made it to the doctor appointment. But it was such a scary and helpless situation to be in. I felt so alone. I sure hope I helped you somewhat.

 

[Krisqe]

My father is a dementia patient and under treatment since 6 months. He stays alone in my house. I never get time to spare for the sake of his health. I’m planning to hire a caregiver from an in-home nursing care service provider- C-Care Health Services at Toronto . But i’m not exactly aware in what are the things we might should aware of while hiring a caregiver ? Any suggestions or advices will be highly appreciated. Thanks in advance

 

[Tinyflame]

Dear @Ms Spock, what is important is whether he is suffering from dementia (50 sub-types & counting), Alzheimer disease (usually distinct symptoms of inability to tell time, mixing up pronouns, +/or wandering- the only form that shows this), or for example Lewy-Body dementia (unique in 'seeing' animals or people not there). Also there are other conditions, one known as NHP for example that appear to be dementia (but include shuffling feet & bent posture) that involves swelling of the brain & properly recognized totally treatable & reversible. Nothing can be verified without autopsy of the brain after death.

Whatever your decision needs to be- & I say 'needs' based on no denial & accepting reality- care homes can be ideal & those there very happy, provided the staff are excellent. They are equipped & knowledgeable (& also 24 hours). Please do not have guilt. They are created for this very purpose.

One thing I find ineffective is trying to reason it out with the person; better still to be solid, kind, honest & trustworthy (with them). For example, if PB was on the ladder, if there is a distraction he likes gently indicate to him for example, "Would you like to have a cup of coffee with us?" (All the while getting him safely down, & the next morning getting reversible locks on the doors). Or a favorite TV show, or whatever That is why it is so difficult with deterioration in a home environment, it itself becomes unsafe, while the person themself becomes more anxious. But there is a fine line between 'going along with it' & realizing when to ride it out, when to distract, & when to enforce through gentle insistence. However, he will likely not 'listen' to you in the way someone reasonably would. But he will still have his own motivations. If you can predict or understand better those or 'see' his fears, you can straight up address them. For example, with a TV show he may think the people are in the room (literally). He'll then equate it as we would-how would we feel with strangers in the house? Because that is exactly how they feel, reality is altered.

But it is heartbreaking on so many fronts & so difficult. It requires too constantly repeating & reassuring the person - don't deviate from your response. Having to deal with it though is exhausting, another reason why a care home & specifically more (trained) people can share the burden.

In many ways it's like dealing with & protecting a child, & yet the person recognizes they are an adult & expect the autonomy & freedom to be treated as such. And as @Muse said, they remember their role & continue to expect the right to fulfill it independently & for others to respect it (even if in reality they are no longer capable of even small sound or safe decisions, for example, choosing their clothes- bathing suit in winter minus 40 degrees, parka at 70 degrees). It can be both easier & worse for family to break through: better, because they still love & trust their family, more difficult because they think "who are you to tell me what to do?" However, as a care-giver, if they trust you (me) they will usually immediately say, "I can't remember where I know you from (we've just met) but I know we are very good friends", or something similar. Keeping it positive, being extra-specially kind, speaking from the heart, & expressing being sad or worried for them can help too (not sad about their illness, sad or worried for example that PB could hurt himself on the ladder- fall, eg "Your knees aren't what they used to be").. But that can only be more effectively applied after their anger passes as well.

What is common too is they may confuse their relationships, thinking for example a child is a spouse. Even if not, I often say to people with it (being honest), "(S)He is your daughter (son), they love you is why they do it, it's a kid's job to worry" (to explain to them why their 'child' is dictating what to do- they usually see it that way (back to their feeling of the right to autonomy) ). It usually helps de-escalate things.

Similarly, I hear people or families say all the time (to their loved one too), "I told you that, why don't you remember? Why did you do that? Why did they do that?", etc. Frustration, fear & worry of course, but the answer is because they have dementia, or Alzheimer disease. (Substitute, "Why do you do that? Why can't you do that? Why do you pull away? Why can't you trust? Why do you leave (for good)? , etc with because I have ptsd).

Love & honesty & respect & kindness with the person go a long way too though.

 

[shell]

@Ms Spock is it possible to have him re-assessed while he is in respite care. My Mother in Law went down hill very quickly, but one of the most important things my husbands family found was keeping her safe.

There are so many stimulating activities that are available in care facilities, my MIL took up dancing again, and interacted with others in a way that she never did at home. She nearly burnt down the house, would have to be prevented from leaving as she would get lost, and finally could be violent and angry, which drove her friends away as they felt threatened by her behaviour.

Sadly at home she would just sit at the window staring outside, doing nothing all day. At the care facility the interaction with others improved, her mood improved and participation in activities improved her health considerably, she started to put on weight and was smiling again. She had more vistors in the care facility than she did at home, as often the friend was there to visit several people because at that age sometimes relatives, friends can be in the same facility.

Having him assessed or discussing his care with the carers at respite care may give you a better understanding of where he is at, to help B make an informed decision on how best to proceed with care.

 

[VioletButterfly]

Hi Ms Spock - I tried to put a message out here yesterday, but it didn't take, so wanted to login and let you know you are not alone. The support others have given you above is wonderful. Please also know that you have my understanding and support as well. I'm glad that you have someone to help you (your husband) as I know how horrible this disease process is and what it takes to walk through it. I have a thread over under the PTSD Relationships forum regarding my mom entitled "Detachment". I am her comprehensive Power Of Attorney, Trustee, and Executor. It's been hell on earth and still is. Past the emotional codependency stuff and gruff in the post due to Mom being a narcissistic alcoholic, there is a lot of good info in the post regarding legal document necessities, and good websites for info and support.

While PB can still sign for himself please see an eldercare attorney and have the necessary documents signed. I, and others, have found that this is a number one hot fire in this situation. If documents are old, please update them. I found that out the hard way - the attorney called mine incomplete (no healthcare POA or trust) and crispy as they were done in 1996. It is a long road. I'm not sure what country you live in, but seek counsel from an elderlaw attorney to work through this with you so that you, your husband, and PB are protected, and you can take the actions you need to in order to secure PB's care and assets.

I applaud you two for keeping PB at home for so long. How wonderful of you! I wish the best for you. Please let me know if you have any questions that I can help with or if I can be of support. I'm still in the thick of it and learning a great deal, as my other post notes, about relationships, this disease, and those who walk through it with you. Take the very best care of yourself and :hug::hug::hug::hug: your husband a lot. Both of you will need it. VB

 

[ms spock]

Sorry, I meant while he was in respite. I got the impression B was still visiting him there. Just a thought, but this could lead to him being more unsettled?

He is fine in respite. B is not visiting for him in the month Papa Bear is in there - but I get your point @jaccat. Thanks for the suggestion.

B had to drop off one thing after we dropped him off and saw PB briefly. The next time he just went to the nurses station. PB thinks he is overseas for work at the moment - so as not to upset him.

I went for an hour when I dropped stuff off. I will go and see him in two weeks and take new medications over from - well the eye drops over.

PB actually does really well in respite care. He has friends in the nursing home. He gets on well with the staff. Some of the staff love his stories so they go in and talk to him during his breaks. He is pretty social.

He seems to reserve his bad behaviour for home. Though on admission he was shouting what he wanted and saying he pays the bills.

 

[ms spock]

@Junebug he has been to the geriatrician and we spent a day in the hospital getting scans - I am not sure what the diagnosis is but he is on Reminyl which is for mild to moderate Alzheimers. The GP once mentioned three things vascular dementia being one of them. It is hard to talk to the medical professionals as Papa Bear calls out a lot trying to understand what people are saying or telling stories.

 

[ms spock]

@Ms Spock is it possible to have him re-assessed while he is in respite care. My Mother in Law went down hill very quickly, but one of the most important things my husbands family found was keeping her safe.

We are struggling with keeping him safe. I am kind of accepting that he will have a fall now there, I wanted to avoid that, but it doesn't seem possible.

I don't think it is possible to have him reassessed whist he is in respite care @shell as we need to be there to find out what they say. Also once he is in a routine of the nursing home - that is very safe for him so he is mostly settled down. So it wouldn't be an accurate representation of how he is at home.

Having him assessed or discussing his care with the carers at respite care may give you a better understanding of where he is at, to help B make an informed decision on how best to proceed with care..

That is a good idea. I will do my best to ensure that this happens

 

[ms spock]

The support others have given you above is wonderful. Please also know that you have my understanding and support as well. I'm glad that you have someone to help you (your husband) as I know how horrible this disease process is and what it takes to walk through it.

Thanks I am not married @VioletButterfly but we do work well as a team.

B is on top of the legal stuff - that was worked out some years ago.

 

[ms spock]

Of course you can't be alone with him if he's too much to handle and meds and all. My grandpa had to be sedated after the attack until he was too weak to do so. His wife couldn't be alone with him in that state either.

This is really hard.

Frankly, it's just so hard to watch someone unravel, no matter what the cause, and to know it will end them fairly soon. I'm sorry you and your partner have to suffer through this. I think a lot of you for your compassion.

It is not a whole lot of fun.

And I am feeling pretty burnt out.

 

[ms spock]

Thanks everyone for your suggestions!