Janine, read my blog (hostsue), Ann's blog (arogers) Ruth's blog (RLT), Sarah's blog (spacie1) and you will find out that the "Angel Florence Nightingale" image does not apply to any living woman I know.

We are all struggling, with our emotions, our survivor, our lack of support, our finances, our environment. We are like mad women, dragging our survivor towards wholeness and healing through some crazy government-designed maze of red tape and dead ended unhelpfulness. We have pulled ourselves up to our full height as a bluff against all that life throws at us and now we are stretched to the limit. And in the caregiver's world there is no place to hide.

Right now, although you don't think so, you are in a fairly easy stage of caregiving with a lot of the hard and dirty work of looking after Larry done by the paid staff. One day Larry will be all your responsibilitiy. For now you need to be learning how to look after him, because at home you will be doing everything else as well. All responsibility, all care will be in your hands.

The good news is that by the time he gets home some of the old Larry may be back. He may be a cheerful and endearing companion, he may be someone who will make you very proud with his hard won progress. It is an even harder road for him to travel. But for the two of you, if your love is there, it will still be a life worth living.

(((Hugs))) from Sue.

Jean and Sue, of course you are both right - but I need to acknowledge the feelings that I'm having or I start to feel like a total victim. In the meantime, I'm scared about how I am going to handle the future when things change yet again and Larry comes home. Based on what the SNF and the hospital have told me, he will need full time care and supervision once he is home, and if that's how it turns out I'll have to hire someone, probably a live-in. I am fortunate to have a career that pays enough to almost manage it all, and maybe that will actually be better than if I were to stay home and try to care for him myself...at least I will have some kind of outside life. On the other hand, I don't believe that anyone is going to care for Larry as diligently as I would, but unless we go on MediCal that's not an option anyway. The obligations, the mixed emotions, the uncertainty, the bureaucracy and incompetence - there is no escape from it.

I know in my heart that Larry's job is harder than mine, and that he would rather be anywhere than where he is right now. I would so much rather be the caregiver than be the one cared for! I'm trying to appreciate that fact and move on from the self-pity stage, but I do a fair amount of backsliding, as you can see.

-Janine

Janine,

I fully agree that there needs to be a place to openly acknowledge our thoughts and feelings even when they seem inappropriate. In my experience that is the only way to then be able to address them. If we hug the inappropriate ones to us and we become usless and self-centered. If we take them out and access them for what they are then we can begin to move on.

Remember that Larry is probably at least as frustrated and even more confused about what has happened to him and his life. He does not have an outlet like this at this time to vent those feelings. Hard as it is, you have to clear a bit of space to let be the one he vents to. Again he needs to vent and deal with those feelings not hold them to himself.

I would suggest that you learn how to do as much for Larry as possible while you have help. I had the therapist teach me how to transfer my husband in and out of the car while he was still inpatient. I knew eventually I would have to be able to do that task. With a doctor visit coming up this may be a good time to add a new skill to your caregiving resume. By the way, my husband had the abilities of a newborn when I learned this (he couldn't even sit up without support) so I know that it can be done.

Ruth

Janine,

Ruth is so right - as part of your "learning" experiences, receive instruction on how to transfer Larry. This will be beneficial in the long run as you will be doing the transfers once he comes home. As he gets stronger and the brain rewires, he will hopefully be able to work with you and not be dead weight. You are new to all this, as is Larry; it takes time and patience to learn how to adapt to your new lives.

Larry. I'm sure, is every bit as frustrated as you are but he cannot effectively express his frustrations at this point. Hopefully that will change.

As a survivor, I know and can emphatize with his frustrations.

Janine:

I know you are using this blog to write your all inner thoughts,frurstrations. listen to all caregivers's advice. they have been through that route before, and have come out successfully. I agree with Jean don't wear hat of victim in tough situation. Larry needs to fight this and right now he needs all the support of loving spouse. don't take out his frustration personally. everybody sticks together in rosy times. person's metal is checked when they ride through tough times. you need to become survivor in this situation & not victim to stroke. If faith works then use that. I believe in one thing though didn't believed that when I was in hospital " nothing stays forever, even bad times has to pass".

Asha