Janine-

I think you need to scale back on what you tell him about all changes you will need to make in your life to accomodate him. I don't think I will like that either if my hubby comes & tells me all that. I am sorry but you need to be more sensitive here.

janine,

it has got to be hard knowing what to tell your husband. i propbably would just try to get it simple. the remodel needs to be done, you are handling it and that is that. the same for a PC for your husband. the best thing may just to handle these situations so he does not worry about the details and being more of a burden. i know you want to keep him in the loop but that may come when he is stronger. remember, you are doing your best - there is a load on your shoulders -the situation is new and we learn from mistakes. kathy[/b

Janine,

Hope your next visit with Larry goes better. You'v got to keep in mind, change is hard enough for the average person. For a stroke survivor it's worse as there is not much you have control over initially. Larry has lost his independence and his "man of the House" role so you do need to be compassionate and not overload him. I know you didn't get him upset on purpose but my suggestion for now is to leave it on a "need to know basis" with no massive details. What you could do, is keep a journal on things that are changing that, at a future date, he could read.

Janine, I think what Jean said is a little harsh. I think like all of us caregivers when we were new to the job you are trying NOT to take over. And in sharing it all with Larry you are trying to keep him in the loop. What is happening is that you are kind of overwhelming Larry, which I know was unintentional. So yep, keep it simple, don't give him the details and let him absorb the information slowly. Or he will freak out as he did this time.

When I was trying to get a driveway up the side of our house so I could get Ray in on the level with his wheelchair I would sob and sob as my clever carpenter husband went all silent on me and turned away. I wanted to scream: "I am doing this for you, support me in this." but knew that he didn't want to face the reality of the changes I was having to make to the house. He wanted it to all go "back to normal", my reality checks were making it impossible for him to continue to deny what had happened. It was tough for him to acknowledge the true situation. I was not leaving him without hope, I was re-assuring him that whatever happened we would still be together. But maybe it didn't come across that way sometimes.

I knew in some ways it was a desert where his mind was, and no picnic. He went away a worker, a handyman, a respected member of the community, a strong father figure not just to his own kids and came back a "cripple" in his own words. It took all of the 4 1/2 months he was in hospital and rehab to get his mind around that. He cried when he saw the concrete driveway where the garden and lawn had been. he cried when he saw the wall ripped out and a crude doorway put in to allow him a direct passage to the toilet. But , honey, it HAD to be done for him to come home.

It is hard to take over another's "job" but it is as Jean says all about US as a COUPLE so that has to come across pretty strongly. I used to say: "I am doing this so we can be together again." and we still are after nine years. I am wishing that for you and Larry too.

(((Hugs))) from Sue.

Janine,

I too think that Jean was a bit more than harsh and maybe some people need that. I would shrivel up and cry if it came my way especially when I am doing my best. This is a time of change for both you and Larry and each of you have to learn new skills. Much of the learning process is trial and error. Sometimes you will get it right and some times you will get it wrong. Eventually it will become easier but the process will continue for the rest of your lives. I for one DO NOT believe that everything is about the stroke survivor because two peoples lives have been been equally effected by this stroke but in vastly different ways. Both of you will have to make compinsations for the other as you learn your new roles.

After my husband's stroke we lost our whole lifestyle. We had been travelling full-time in a motorhome. I had to make all the decisions to sell the motorhome and purchase a house. In our case I did tell him what was going on to "keep him in the loop." That worked for us. Now though with the vascular dementia he is not able to handle as much information so I have had to make adjustments to what I tell him and when. I still end up with an unhappy camper at times but it is not my fault any more than it is his fault. You will have to learn to read Larry's reaction to things so you can back off when necessary. Other times you will have to deal with inappropriate temper tantrums because he cannot handle everything that life is throwing at him right now. I cannot imagine how he would feel though coming home to all the changes in the house without any advanced warning.

It is apparent that you have been really trying to do the right thing. You seem to be putting Larry first and trying to make his life as good as possible. At the same time you are dealing with depression which is a deep pit which makes even the process of thinking difficult. As long as you are willing to keep trying and to admit that mistakes will happen I applaud you.

Ruth

Sue, thank you for your kind words. What Jean said IS harsh, but that's what reality is right now. I feel like I really f***ed up today...Jean is right, even though I don't like to admit it. My job is to handle the infrastructure and to take care of the things that Larry can't handle right now. His job is to try his best to get well. I have been giving him way too much information, and although I tell myself that it's to keep him "in the loop", it's also because I'm used to making decisions as a couple and it's easier for me if I talk to him first before I start doing things. The problem with that is that Larry can't make decisions right now, or handle changes, or be my confidant, lover or friend. It's totally unrealistic of me to have those expectations, and I feel terrible for having tried to lean on him at a time like this. I guess old habits die hard, but I am going to have to learn the new way, because the old way doesn't work anymore.

I went back and saw Larry two more times today, once at lunch time (he would not eat what I brought, or the food the SNF provided), and again around 4:30. He is still depressed and angry, and I have to blame myself. At least he would look at me this evening, and didn't push me away, but that's small consolation. As far as I know, he ate nothing today, and I know that he refused to cooperate with the ST, the OT or the PT, and was in bed all day because he would not get into the wheelchair.

I hope that tomorrow is a better day for us both. I did manage to get some things done - I have an appointment to attend an elder law seminar tomorrow to learn about Medi-Cal and what other benefits might be available, and I made appointments for Thurs. and Fri. to get estimates for the bathroom remodel. Still, I am feeling pretty low, and not very good about how I handled things today. In retrospect I think I really dumped on Larry, and that's fairly despicable considering his limitations. All I can do at this point is damage control, and hope that he feels better tomorrow.

I spent some time this afternoon weeding the yard, and pruning the grape vines, and doing some other stuff that needed to be done. I took pictures of the results and showed them to Larry this evening. He seemed interested and liked looking at the photos - I think that's the kind of information I need to share with him, not the details of the other issues I'm handling. I am discovering that I've been pretty self-centered, and hoping that I can do better going forward. Weird to be growing up at age 50!

-Janine

Jean, Larry is on an anti-depressant (Wellbutrin), which he was put on after the stroke. He probably could have used it pre-stroke too (he has been depressed for a long time), but he would never have agreed to take it. I think it has helped (up until today, anyway). I am considering going on something myself, but not enthusiastic about it and hoping I'll pull through without it.

What you've said is true - in my heart I do not really believe that Larry will achieve a level of recovery that will give us any approximation of the life that we had before. I hope that he'll regain some mobility, and some speech, and if we are really lucky some continence, but I'm anticipating that he will have significant impairment. No doubt I have communicated that to him in many ways, some subtle and some not-so-subtle. That is pretty toxic. I will work on being more upbeat - which is not my normal M.O., but it's one more thing I need to learn. I hadn't actually realized this before you brought it up, but it's very true that if he doesn't think I believe he'll get better it's tough for him to believe it.

There are many reasons that I come to this site, including venting, getting advice, and getting/giving support. The most important reason for coming here though is to learn how to better help Larry and me get on with our lives, and that's not always warm and fuzzy. I know that I am making mistakes - good intentions are great, but not enough.

So, thank you for being honest, and telling the truth. I am so childish sometimes! I want a pat on the head and someone to tell me what a good girl I am for working so hard and being such a good scout. What rubbish - I embarrass myself sometimes...but if I can't tell the truth here, then where? All I can hope is to to better tomorrow, and thank you for helping me to do that.

-Janine

Janine,

All information is on a need to know basis... and there some things Larry just does not need to know. One thing that Jean said that really struck me was how hearing about these changes may make him feel his chances for further progress are poor. I recall my husband being told to order items for me such as a one handed cutting board, etc. and questioning why I had to continue therapy. It seemed rather obvious to me that if he was being told to invest money in these things for my home use that my arm damage was permanent and therapy useless. Apples and oranges I know, but I would think and I obviously have no experience as a caregiver. Doing what needs to be done without his knowledge is not a violation of any trust ~ you are doing it in his best interest, not for some selfish purpose. When he gets home the bathroom hopefully should be a welcome accommodation to where he is in his recovery instead of a predetermined glimpse into his prognosis. It may also offer him the comfort of knowing that he did not lose his role as man of the house, but in his absence you had the inner strength and capability to hold down the fort without emasculating him. As much as they hate to admit it, they actually admire that

Janine:

I think it will be good idea for you also to go on antidepressant, such that you can go through this difficult time in your life. you can always get off them once difficult period gets over

Asha

janine, i do agree with alot of what jean has said. YOU CAN NEVER GIVE UP HOPE, just keep that saying in your head. larry has to believe that to get through his rehab and the recovery journey. i as a survivor, never got tired of hearing it. rehabbing after a stroke is the hardest thing alot of survivors have ever had to do in their lives. its alot of physical and emotional thinking, i can do this to get better so i can go home and start my life again. or at least its how i thought after my stroke. i refused to believe my arm wouldn't get better and i knew about stroke already and what it is capable of doing to a person. forget about telling larry all of the things you are doing to prepare for his coming home, it just makes him feel worse, until he has accepted the stroke. his brain is still working overtime. the old larry you knew is gone. he needs to work on the new larry to be the best he can be now. recovery is a lifelong event now. i know how hard this is for you to get through, you learn as you go along when he comes home to his comfort zone that will be another phase to go through. it will be different for him and you to make a new life for yourselves together. family is very important to a survivor, they are the ones that know you best and can encourage you on when you think your life is over because of stroke. things do get better in time. alot of spouses leave when something like this happens to a marriage. i pray for you both everyday to get through this together. hang in there janine, we all are here for you.

Today I focused on only Larry and his recovery. I realized that lot of my conversation (if you can call it that - more accurately, it is one-sided jabbering) is about me and what I've been doing, or his son/daughter/grandchildren and what they are doing. Not enough about Larry and what HE is doing and how we/I can help. I did bring up the subjects of remodeling, or budgets, or having to go back to work next week - all I talked about was how he feels about his therapy, how well he is doing, the huge improvements he's made since IT happened, and like that. I also make sure to smile a lot and reassure him as much as I can. Jean is right - he CAN read me like a book - so I am not sure how much of all that he actually bought, but it has to be better than what I was doing before. I learn slow sometimes, but at least I'm learning something. It IS hard. Nobody is saying it's easy, and if they were I would know they had gone totally off the deep end!

xxxoo

-Janine