[AstaireGal]

Hi, all. I'm new here and was over at the PP/SPMS mini-site when the moderator pointed me in this direction. I have had PPMS for 19 years and am a triplegic, use a power chair and need help with most ADL's. I have one useable part - my right arm/hand - so I do everything I can for myself with what I've got. My biggest problem; that I hope you won't mind me whining about; is that my spouse is also my caregiver. He is a wonderful person, but it just stinks when the person who is supposed to be your romantic partner in life ends up having to be your "nurse" instead. I KNOW I am SO lucky to have married a man who didn't run out the door when this crappy disease got really bad, but for over a year we have been more like roommates than husband and wife. And, most ironic of all, HE is the one who can't deal with the stress and unhappiness that comes with my disease.
Yes, he attends a local caregivers support group and goes to both individual therapy as well as marital therapy with me. None of it seems to get through to him, alas.
Anyone care to comment? I am feeling so frustrated that I am the one sliding toward being an invalid and HE is the one who can't cope. Aaaaak!

[Blessings2You]

Hi, just wanted to welcome you to the community! I'm way past my "smart" time of day, so will step back and let someone else dispense words of advice and wisdom!

I feel your frustration! My husband is a good man who would stick by me no matter what. I'm thankful that I'm not greatly incapacitated (at least yet...) but the disability I do have limits a lot of my activities. He never blinks an eye at having to pick up the slack.

The emotional aspects, however...I guess that's my responsibility. I hear you about the roommate thing.

[ANNagain]

Astaire Gal,

Welcome to this corner! Glad you found us.

Well, here's what I think in general. Not all men can be are care partners. Some marriages might be better if we had a PCA for the very personal stuff. Someone that you pick and train yourself to do things your way. That would help w the difficulty of asking a spouse to do something you know in advance he doesn't want to do or you would rather not have him do.

I believe there is funding for this but don't know the particulars.

You and your husband could still be a team planning meals, outings and such. And he could do the thousand little things that you might need help with.

Toileting, bathing, cath care etc could be for the PCA. I am sure there is more.

I hope you get the idea. As B2Y said, it is late in the day here.

Best to you,
ANN

[SallyC]

It wouldn't be so late in the day, if the powers that be hadn't robbed us of an hour of our life, with DST...bahhh!

When my MS took a turn for the worse, DH and I were in our 50s, so we had become close loving friends and the sex stuff was, let's say, not as important as it was in our 20s, 30s and 40s. But thst's me/us and not you.

I understand and Ann has a great suggestion. Have an aide come each day and get you started with all the personal stuff and that will take some stress off of both of you. You may then go about your day in a more normal way.

I hope you and your Dh can find a way to relieve some of your stresses to be happier.

The best of wishes and hopes for you.

[Debbie D]

Welcome to our little corner of the world...

DH and I went to a workshop for MS patients and caregivers. The moderator brought up the point that the caregiver/spouse secretly wishes, as we do on some days, that this "was over with". when DH shook his head in agreement, it clued me in on how heavy a burden he is carrying along with me on this crummy journey.

I would also suggest that if you can get a caregiver in occasionally to take some of the burden off of him it would be beneficial...maybe counseling also-for the both of you.

This disease takes a lot out of our quality of life...punch back with every tool that society gives you!!

Keep us up to date...we are a nosey group of people who love to comiserate, support, put our two cents in, and hug...

[TheSleeper]

" I KNOW I am SO lucky to have married a man who didn't run out the door "

It isn`t just men, my ex`s actions got her thrown out. The disease was easier to deal with than her.

[Dejibo]

My husband has been brave and wonderful. He said "you dont have MS its a case of WE have MS." aww! in my opinion is very hard to be the care giver. its very hard to watch someone you love slide towards something you hate.

Can you designate days off for him? Send him out to a ball game, or a man's night out? He needs to find time to refill his cup and be able to start giving from a full cup, instead of scraping out dust from the bottom of his.

its so important to keep up the care giver meetings, or if you feel that he isnt getting anything out of them, find a new one, or even go to couples counseling. Its really hard to figure out your new roles when the traditional ones dont exist anymore.

I wish you the best of luck .

[AstaireGal]

Originally Posted by Debbie D

Welcome to our little corner of the world...

DH and I went to a workshop for MS patients and caregivers. The moderator brought up the point that the caregiver/spouse secretly wishes, as we do on some days, that this "was over with". when DH shook his head in agreement, it clued me in on how heavy a burden he is carrying along with me on this crummy journey.

I would also suggest that if you can get a caregiver in occasionally to take some of the burden off of him it would be beneficial...maybe counseling also-for the both of you.

This disease takes a lot out of our quality of life...punch back with every tool that society gives you!!

Keep us up to date...we are a nosey group of people who love to comiserate, support, put our two cents in, and hug...

Of course, as I am new here, I now realize I should have given more info... As to this issue, the biggest problem with having a chronic disease like PPMS - IMO - is that insurance companies have lots of written rules and regulations that all boil down to "no" when it comes to home health aide services. If you break your leg, ins cos will happily allow/pay for a HHA for the 6 weeks you need it (until you recover.) But I will never recover, I will only get worse and that makes me a "chronic case." I have to fight over-and-over to get the lovely, helpful HHA I have now - who comes in twice a week for a total of 4 measley hours -but that is it. Neither the county nor the state gov't is of any help (believe me, I have called, written and even had a social worker check); so, the only way for us to have more help is to pay out-of-pocket. I don't know what the prices are like where other people live, but here it is a minimum of $25 an hour. We simply cannot afford it.

[AstaireGal]

Originally Posted by Dejibo

My husband has been brave and wonderful. He said "you dont have MS its a case of WE have MS." aww! in my opinion is very hard to be the care giver. its very hard to watch someone you love slide towards something you hate.

Can you designate days off for him? Send him out to a ball game, or a man's night out? He needs to find time to refill his cup and be able to start giving from a full cup, instead of scraping out dust from the bottom of his.

its so important to keep up the care giver meetings, or if you feel that he isnt getting anything out of them, find a new one, or even go to couples counseling. Its really hard to figure out your new roles when the traditional ones dont exist anymore.

I wish you the best of luck .

As I mentioned in a post a little while ago; we would have to pay an aide $25 an hour, which we cannot afford. Also, I am VERY disabled and need help with 90% of ADLs; meaning the aide would have to help me do almost everything; including use a Hoyer lift to transfer me and most aides are NOT happy to be assigned someone like me. I don't want to offend by making a generalization, but hiring an HHA from an agency for a one-shot time or even a few times (so DH can go out by himself to do something) means I am getting a stranger who must come into my house and take care of all of my most personal needs plus do work such as cooking lunch, cleaning up, etc. and I have yet to find one who was pleasant and accomodating. Most have done the least work possible and a few have even shown annoyance that I am "bothering them" when I ask them to perform a task. It's very demeaning and dehumanizing for me. Mind you, I am not meek-and-mild and do not let anyone abuse me or push me around; but it's still very unpleasant.
My DH already belongs to two hobby groups and attends meetings in the evenings twice a month. We already go to counselling. It's not that he is resistant to helping me, it's that I am the one who is emotionally and mentally "strong" and he is a mess. I never thought that he would be the type to fall apart. Sigh...

[AstaireGal]

Originally Posted by TheSleeper

" I KNOW I am SO lucky to have married a man who didn't run out the door "

It isn`t just men, my ex`s actions got her thrown out. The disease was easier to deal with than her.

Didn't mean to sound sexist - either sex can be good or bad.