Janine, one of the advantages we have in Australia is that a wife or partner can get a Carer's pension. It means living in genteel poverty BUT you can stay home and look after your spouse that way. We also have Medicare which gives us free health care and a pharmaceutical scheme that gives us meds with a small co-pay.

I don't know how you can go to work and leave your loved one with someone else as I have had no experience with that. All I can say is: "Hang in there." and pray that it will get better for you and easier for Larry to accept your help.

(((Hugs))) from Sue.

The system we have here is heartless, and terrible, and the only people happy with it are the ones making money, and I'm surely not one of them! Genteel poverty is about the level where Larry and I will be anyway, even with me working, because of course I must pay out of pocket for the cost of his caregiver. Doing that will leave us just enough money to pay the mortgage and buy the necessities of life. This is not what we worked hard all our lives to achieve. And I am one of the lucky ones, because my work pays well enough that I can support a caregiver. For many, a situation like this means that they lose their jobs, lose their homes and end up destitute.

Larry does have good insurance, but like virtually all plans in California it only covers 100 days of skilled nursing care per year, and then they cut you off. There are limited home care benefits. At least the pharmacy benefit he has is very good; typically a $5 copay for a generic medication.

I hate not being here with him during the day. It is very difficult to concentrate on my work, because Larry is always in the back of my mind no matter what I'm doing. I keep pushing, and asking questions, and trying to find ways to work the system, and that's about all I can do. In the meantime, Larry's really making it harder for everyone with his antics, and I don't know what to do about it.

-Janine

I am not surprised this has happened. I didn't lose my speech, but I lost my independence at age 70 and that is very difficult to accept.

I told you earlier to expect mood swings at first, but that was putting it mildly. For a stroke survivor, coming home finalizes the fact that we can no longer do the things we always enjoyed doing. In the beginning, I was really angry. I didn't hit anyone, but I wanted to, and I don't have nearly the disabilities that Larry has. The trip he had to take across L.A. probably wore him to a frazzle.

I know you are not going to believe this, but it will get better. If you can communicate to Larry how much you love him and are happy to have him home on a daily, if not hourly basis, he will calm down. Medication may help in the beginning.

If you want to PM me, I will try to answer any question. In the meantime, here's a :hug:

Vi

nun

I 2nd what Jean and Vi said Janine. If I was in need of a full-time caregiver, I'd vote for Jean. Very Very wise woman. You're still in the learning stages of all this dear. Patience, patience, and more patience right now.

Janine,

When I first came home I was much further along than Larry but I was still incapable of walking and doing most things by myself. My mother came to stay to help out and I would become very angry with her because she would not even let me do little things I was capable of. She would take offense to my being irritated with herand my husband tried to explain to her that she needed to back off a bit. She of course thought he was just cold and mean. He tried to encourage me to be work toward being a bit more independent and saw that I resented not being capable of doing things on my own. As time went on it almost seemed that she would never see me as anything more than what I was like when I came home and would always expect me to be that way and treat me as such. He finally said he thought we needed to ask her to go home or I'd be in my wheelchair for the rest of my life. Sticky as it was, I delicately did. She called him a few choice names between her and me. She went home to New York retired from her job sold her house,and bought a house a few miles from me. When she returned a year later I was walking completely unassisted, and showered and dressed myself without help. Now she still comes over every day and insists that I need help. It still irritates me, she doesn't at all, but the fact that she will not allow me to trust my own judgement in that I am not stupid I know when I need help and will ask I will not put myself in harms way. I feel like a child all over again who is trying to grow up and gain independence. The anger is not directed at you. The reality of the whole thing is a tough pill to swallow. I'm with Donna..listen to Jean she is a very, very wise woman.

I am so sorry for what you are going through, it makes my problems seem minor. I am a caregiver and trying to work so I know exactly what you are feeling. It is very hard to separate your feelings from home to not thinking about it at work so you can function properly.

I am finding that difficult too and sometimes i think i just need to go somewhere and scream and hit things until i feel better!ha

hang in there and know that people are praying for you and sending you their strength!

fairlakelady1

Janine,

I wanted to talk about one more thing. Dignity. Stroke survivors with disabilities like Larry's and mine, have to give up our dignity in many ways. I don't wear diapers, but Paul has had to clean up some pretty awful messes in the past. I have better control now, so it doesn't happen much anymore. It is degrading to have to be taken care of like a child.

Jean has some great advice. She should write a book to be passed out to all future caregivers.

I can't emphasize enough that it will get better. It has been three+ years and I can toilet myself, get in and out of bed, and even walk around the house using my special walker. I need help dressing and bathing and Paul has to help me get ready for bed at night because I wear a splint on my hand and a special boot on my foot that allows me to get up at night if I need to. My chair is left next to the bed so I can transfer into it and go to the bathroom. It is just a matter of learning to do things in a different way. I have a transfer pole next to my bed. I'm still working on my pole dance. :laughbounce:

Vi

I just finished taping Jean's message to my bathroom mirror so that I can read it every morning for a while. It is so easy to forget that in many ways caregiving is like gardening; more plants are killed by over-watering than by anything else! I know that I'm telling Larry in many ways, both subtle and not, that I view him as an invalid (in both senses of the word), and that this is not helping him.

I read more today about emotional lability and realized that it's not what Larry is exhibiting. I had confused what it meant - I read about it way back when the stroke first happened (two whole months ago!), and my memory is not that great these days. Weird how Larry's stroke has affected my own thought processes. It reminds me of a friend who went on anti-depressants and noticed after a few months how much better her husband seemed to be!

It's true, I really did think that when Larry came home there would be some kind of transformation just because he was here instead of in the nursing home. That seems laughably naive now - I didn't pick up on the flip side of it at all, which is that being home also emphasizes how different things are now from they way they were before.

Larry did learn how to put on a shirt by himself in the SNF, and he's been doing that every day. Also shaving himself, brushing his teeth, combing his hair and washing his face. It's pretty amazing how much he can do, considering how impaired he was at first. My SIL bought him flash cards this week and has been working with him every day trying to get him to learn new ways to communicate. She tried sign language flash cards too, which hasn't been a big success, but he did like the sign for "thank you", which is thumping your chest with a closed fist. One of the things that Larry teaches is primatology, and when Judy made the chest-thumping gesture he got a big grin on his face and started making gorilla noises. It was pretty funny.

Yes, I am totally in wife mode...I keep having to stop myself from hovering and being a mother hen, which would have driven him nuts before the stroke and I'm sure is that much worse now. Our whole relationship is different, and it's a challenge for both of us.

Today was better. Larry was in a much better mood and was cooperative with Cecilia and with the OT and ST, who both came to the house today. Maybe he got some of the frustration out of his sytem yesterday. I talked to his doctor and he said that he does not recommend taking him off the anti-depressants right now; he said to give it some time and let Larry adjust to his new situation.

I'm exhausted, but a little more at peace than I was yesterday. I know that I will get better, but some days are pretty hard, and probably always will be.

Vi, I am still laughing about your pole dance...

Thanks to everyone for all the support; I could not do this without you!

xxx's and ooo's

-Janine

nun

Interesting about the sign language - what language is she teaching? For ASL (American Sign Language), Thank you is touching the tips of your fingers of a flat hand to your lips and moving your hand down with the palm up.

Janine,

Have you noticed how calm you sound over the latest crisis compared to two months ago? You have come so far in a short period of time and you should be proud of yourself. You haven't arrived yet. If you had I would be jealous because I haven't arrived either. We will still get stressed and we will still make mistakes but you should feel so encouraged with your own personal growth.

For Larry, I don't blame him one bit for his actions. I cannot imagine how exhausting and frustrating his outing must have been. I would have been irratable too. He IS going to have bad responses. The goal though would be for him to gain some more appropriate ways for him to deal with his frustration but he is learning so much right now and it will take time.

I don't think he should be allowed to become a tyrant but letting him do things for himself may be a big motivator. If he fights having his diaper changed let it go and see if he likes living in them soiled. I know that you are doing everything you can think of to help Larry. You need to expect Larry to do his part as well. One of the guidelines I have used with my husband is that I will put the same proportion of effort into things as he does. I can do more so the proportion of effort means if he gives 90% of his ability I will give 90% of mine. If he uses none of his ability neither do I. I have given him the right to say no as well. This also means I can say no too. If he wants me to do something I know that he can do for himself I will not do it. We had major fights over who was going to put his socks on. At first I had to leave the room while he struggle with the task and got upset with me. Now it is easy for him. And in the end he has become more independent.

Ruth

When Larry's stroke first happened I spent hours writing in his diary - compulsive, cramped little letters that fairly SCREAM with anxiety. It would 2AM and I could not sleep, and I would scrunch up in a chair next to his bed (no mean feat at 250 lbs!) feeling like it was all some crazy thing that was going to go away eventually. The words just poured out of me, but they don't make a lot of sense. It's like Hunter S. Thompson meets the Madwoman of Challot, only not as good, if you know what I mean.

It's true that I've come a long way since those days towards accepting what the reality may be. On the other hand, I don't even know what that means...it's like a black hole - things get sucked in and nobody has any idea what might come out the other side. A cowboy! A sea urchin! A pickle! It's so incomprehensible that you eventually have to stop trying to figure it out, 'cause it ain't figurable. That's all I know so far. Every day Larry surprises me with things I had not the smallest clue that he could do. Tonight I was proudly showing him (for about the 5th time) how I fixed the hose, but it was leaking a bit from where the spray nozzle was attached. He took it all apart and showed me there was no rubber ring in the nozzle, and then showed me where to find one in the garage, and then fixed it. I think I've been trumped once again.

Larry had a good day today, and yesterday. Cecilia is very good with him and understands about not hovering. She gets him into the chair and then offers him lunch, or a walk, or whatever the options are, and lets him choose. He's more accpting of her, and though I'm not sure why I'm glad it is working out OK.

Larry's sister Judy left today and I admit that it seems more quiet and peaceful now in the house. I love her dearly, but I do feel dispaced when she's here because she does EVERYTHING so much better than I do. I suspect every family has someone like that. Either way, now it will just be Larry and Cecilia, and that will be better, I hope.

Enough. Tired. Try again tomorrow.

xxxoo

-Janine