PALS refusing outside caregiver - don't know what to do

[poppies]

Hi everyone. I have exams coming up and will need to be away from the home from very early in the morning until afternoon. In a few months time I will also have to start working three full days a week and attending meetings on the fourth day. As a result I spoke to my husband this morning about the need to start getting a caregiver in so that they can be trained to help him when I am not here. He has point blank refused. Says I have absolutely no idea and that it is not an option. I tried to gently explain that it is not a question of if but when but he just gets extremely agitated and angry. I understand that he must be scared. He always said he would rather die than have someone help him in the toilet. It is bad enough for him that I have to do all those things for him. The thing is what am I supposed to do? I have to make preparations for when I am not here. He can't just wee in his pants (or worse) and sit like that until I get home (it would not be the first time). On the other side of the coin these are tough exams. How am I supposed to get him ready in the early hours of the morning, then leave him for the day without being able to go to the toilet or eat (shakes) or drink anything and be able to concentrate on writing my exam? The stress will just be too much for me. How do you introduce a caregiver when the PALS is reluctant? Any ideas?

 

[Nuts]

Poppies, I wish I had an answer for you. I can only add that my husband could never have imagined letting me, let alone someone else, help him on the toliet, but he's eased right in as the need arose. It only happened w hen he had a need and I wasn't there. The attitude of our first caregive has gone a long way. She is chipper and he likes her, and she treats those tasks matter-of-factly. Her lack of discomfort helps him. Clearly you have no choice; you need help. How difficult to do this against a PALS will, but you must protect yourself so that you can continue to protect him. I hope someone whose had to do this can help.

 

[cheerleader]

Oh Poppies- can you try making this about YOU instead of him? Sometimes that works better. " I need to have someone come in so I can not worry and get through these exams" might have an impact. Good luck. Donna

 

[Nikki J]

I am sorry. Do I remember that you suspect FTD? If that is an issue reason may not work. Try Donna's suggestion of course but his empathy may be broken. We had some luck with just going ahead and doing what needed to be done but my mother was underneath a very sweet and accomodating person which I believe mitigated the FTD
Clearly you need someone and it is going to be a bumpy road from what you say so you are definitely correct to start early

 

[affected]

Poppies we have discussed FTD a bit over the past year or two.

I know his behaviour had settled some, but this is so typical of FTD. It's very different to fear and now wanting others to do these things for you. The total lack of empathy and inability to see anything past his insistence on what he wants is a big clue that you are not likely to talk him around.

You are probably going to have to just organise it, inform him (either with advance notice or not) and do what you have to do. Then put up with the resulting behaviour.

This sounds so harsh, but at the end of the day he has to be safe and cared for when you have to be away from the home. It totally sucks when you have to deal with things this way

 

[FamilialALS?]

My experience is like what Nikki said. Because of the FTD mom cannot reason why she needs a caretaker, nor does she have empathy intact to understand the position she would be leaving us kids in if we didn't start a caregiver.

We have started with small shifts- 4hours on Thursday and 4 hours on Friday. The caregiver is really sweet and kind- and patient. Mom still is getting used to it. I am very much relieved to have the right carer in place and have committed to staying the course. I hope this helps.

 

[lgelb]

Poppies, everyone has great advice. I would only add that if you can, get someone to start with who shares some of his interests -- music, film, TV, art, books, sports, whatever. If they can communicate about something/share experiences besides the transactional stuff, it will be less arduous for both of them. For example, our students would share bands/performers w/ Larry that he didn't know, and he likewise brought them up to speed on the British invasion, Americana, Westerns, etc. They would quiz and try to stump each other. There is so much online content available now.

 

[poppies]

Thanks so much for your feedback everyone. As I know you will all understand, our desire as caregivers is to do whatever makes our PALS happy. Unfortunately the nature of the disease puts us in these extremely difficult situations where there is no easy solution. Yes, FTD has come up a few times over the last couple of years. The thing is his symptoms were not consistent which left me doubting whether it was FTD or just his personality. He is german, has an A type personality and has never demonstrated much empathy, and had depression that manifested itself through anger prior to the ALS. That being said, he has had moments where he has been very thankful and thoughtful of me. So. Who knows. The bottom line is we need to get help in at some point. I am very concerned that my stress levels will rise (as they usually do) as we approach my exams and that this will affect my ability to cope with all of the caregiving, studying and caring for our girls and our home and that this will have a negative effect on all of us. Listen to me rationalising!? We need to do this. I just don't know how I am going to bring myself to do it. I don't want to create disharmony in our home :-(

 

[Nuts]

Poppies, as you describe your husband, I wonder if he wouldn't respond well to you being assertive and matter of fact about doing this. My fingers are crossed for you!

 

[Loverly]

Poppies, everyone has great advice. I would only add that if you can, get someone to start with who shares some of his interests -- music, film, TV, art, books, sports, whatever. If they can communicate about something/share experiences besides the transactional stuff, it will be less arduous for both of them. For example, our students would share bands/performers w/ Larry that he didn't know, and he likewise brought them up to speed on the British invasion, Americana, Westerns, etc. They would quiz and try to stump each other. There is so much online content available now.

I like this idea too. Recently a nurse visited who worked with some of the same people K did before she retired. I could see the pleasure on K's face as they discussed this shared experience. I wish I could get more of that for her. It was energizing.

jen