jriva

Just saying 'Hi' and I like heathber's idea (above) about planning recovery days at the same time you plan a vacation.

Best of luck to you, Asha. I agree with Gary: there a lots of things in the community to get involved in and arriving at that point in your recovery where you can start making time for those things is a healthy and good sign. So don't forget, there's all kinds of blog communities out there in the world beyond Strokenet if you start missing writing too much.

Hi Butch,

I am somewhat surprised to read your blog. Of all the male caregiver/spouses to come through this site, you were one of the few I thought would make it. But statistically and sadly you're right on track for marriages that fail after a stroke. I don't think the guilt of 'cutting and running' will ever leave you---it human nature when you've loved someone in another lifetime. So with that in mind, you might want to explore the idea of still doing something to remain in Lisa's life in a limited way---maybe be someone who can be counted on a couple times a month to give relief to whoever takes over the caregiver role. Or if she goes into a nursing home, still visit a couple times a month. All I'm saying is it doesn't have to be an all or nothing situation, especially if Lisa and her parents find some compassion in their hearts for you....and I think they very well may be able to do that as the shock of your leaving passes. Then again it might not be a shock at all for them. I'm sure they know you well enough to see the strain and toll this has taken on you. Whatever happens, You still have my respect and best wishes. Putting your life back together won't be easy but time does truly heal a multitude of heartache and pain.

Jean

Wow, that's great news, Gary. He's come a long way.

Jean

Janine,

Have you discussed with Larry's primary doctor having a visiting nurse come to the house to change his catheter at regular intervals?

Does the college where Larry taught have a speech pathology department that works with people/clients in the community? Maybe he'd be more open to doing speech therapy in an academic setting? The colleges with speech programs often have senior students who will make house visits to help with speech therapy for low-cost private pay in the summer months. You'd have to get recommendations from the head of the department. You'd also need to get Larry on a waiting list now for fall classes, if he does sound more open to doing therapy this way.

Jean

Sue,

It sounds like Tori is a bright star in your life now. I'm glad you're getting to spend some quality time with her.

Jean

Ann,

I hope that 'new house' feeling doesn't go away for a very long time. Congratulations! I honestly don't understand why so many people fight downsizing and/or going to housing that is more disability friendly. It makes life so much easier.

Sushi from a grocery store deli would scare the hell of of me. I know too many people who have gotten sick off that stuff. Glad your husband didn't end up in ER.

Jean

Justsurviving,

Thanks for the deep belly laugh. I had totally missed that typo and read it like Sue meant it to read.

It makes the laugh even greater to read the typo in context to Sue's sentence of: "I hate rifling through his pockets, it is against all those 'privacy issues' laws I was taught when I worked as a pubic servant."

Hey, Sue, I hope you're laughing with us.

Jean

Hi Butch,

Glad to see your update. Those chair lifts are wonderful. I'm surprised it took you this long to get one. Also glad to see you're getting some golfing in this summer. I can't believe the summer is half over already.

Jean

Sue,

Dementia is a cruel and progressive brain disease. That makes it very hard for the caregiver not to have bouts of mourning the past and what could have been in the future. I know you've been there, done that and you seem to be doing it again. Hang in there. You know you can move past this again to find the acceptance you need to go on. Maybe to go on this time, you need to get more outside help, if available. Someone to help with the laundry, cleaning and yard work to free you up for the more hands-on time to care for Ray.

I was just reading an article on this topic yesterday where they made caregiver suggestions for dealing with the emotional side of dementia caregiving. Some of the suggestions are almost laughable if they didn't make you want to sit down and cry. The first one was give voice to your secret longings and the second one was define your realty. Well, no one could say you haven't already done both of those in spades. The next ones were about mourning your lost dreams as a couple and creating new dreams as an individual. I know you've done the first and you probably can't conceive of doing the later. I know I had a hard time thinking about the future when I share-cared for my dad who had dementia. I loved him so much I didn't want a future that didn't include him in my life. But we both know that is unrealistic to think there will not come a day when the caregiver role will no longer be needed. So maybe that has got to be your salvation, to start thinking in the back of your mind about what you want for yourself once you've fulfilled your caregiver role. There are travel clubs for women, lots of activities and groups that someday you'll be able to join again. The point is mourn your past dreams and your present circumstances but leave room to grow some new dreams for yourself.

By the way, if I remember right you and Ray have given a great deal of time to the Lion's club over the years. Don't let that one man's speech drive you out when you know in your heart you've earned the right to be on the receiving end of their good work for now.

Jean

When Don first had his stroke he lost his ability to be a self-starter. He also had apraxia of motion as well as apraxia of speech, meaning you could tell him to comb his hair and he couldn't figure out how to make his good (unparalyzed) hand/arm pick up the comb and run it through his hair. With apraxia, the brain can want to do an action, know how to do it, but not be able to tell the muscles how to carry out the action. I had to put the comb in his hand and help him pattern the motions to relearn combing. We patterned this sort of thing over and over again until his brain and muscles talked together again. It took months but he eventually overcame his apraxia of motion. Had a speech therapist not picked up on his apraxia of motion it would have been easy for someone to think he was unmotivated, stubborn, and defiant or lost too many IQ points.

Learning to be a self-starter---a separate issue from apraxia---took several years to come back. Don was a workaholic and anything but lazy pre-stroke so it was easy for me to understand that a stroke can cause physical changes in the brain making it hard/er for many survivors to be self-starters. I often cringe when I hear other spouse/caregivers label someone as being lazy when the stroke happened less than a year ago. Laziness or stubbornness may be true in some cases BUT new caregivers also need to be aware that there could also be other invisible stroke deficits at work that accounts for their survivor's inability to see the trees in the forest so to speak, the least of which is fighting depression and being overwhelmed with the enormity of the battle ahead of them.

Each of us has to analyze our care recipients deep enough to figure out what works and what doesn't, what could or could not be pre-stroke behavior, what motivates---like Sue figuring out that Ray works harder for males than females. For Don, I used his high IQ to make him aware of everything we were doing and why. For example, when I put that comb in his hand, or helped him with other therapies, I'd tell him things like "we're teaching your brain to talk to your muscles again" or "we're trying to sing these nursery rhythms because we're hoping to jump-start automatic speech" (song learned before age five are stored in a different part of the brain than regular speech). Someone else might have to find a way to jolt their survivor out of their self pity---like watching the Paralympics for example.

All I'm trying to get across is if we, as caregivers, label a survivor as being 'lazy' or 'stubborn' too early on in the process post-stroke then we quit trying to find other reasons for why someone isn't working at their recovery. And if we happen to voice these negative feelings out loud and there really is an organic reason holding the survivor back, then we've succeeded only in causing hard or hurt feelings.

Jean

Sue,

I've always thought that caregivers to people with multi-strokes would benefit from the dementia support sites more than stroke sites. It doesn't matter what the cause of the dementia is, the problems that all dementia caregivers deal with basically follow similar themes. Caregivers that deal one stroke are in the rehab/improvement mode---or at least they should be---rather than being in the mode of trying to hold on to what is still there, knowing eventually the battle will be lost.

Dealing with incontinence that will never get better IS different than dealing with incontinence in a baby or puppy that can get trained or in a new stroke survivor who can evidentially be retrained. It's a constant reminder that your relationship has changed and that's a hard reality to accept.

My brother deals with the violent rages of early Alzheimer's and did so at home for a couple of years. First my SIL went to a nursing home where they couldn't handle her either. Then she spent time in a mental hospital to try to get medications to help before going to a lock-down Alzheimer's nursing home. I personally don't think anyone could care for an ill, violent person for very long without themselves suffering from major depression, etc. My brother goes every day to see his wife and make sure she eats. He can still handle better than anyone else. I see the toll this is taking on him.

Recently I read something where someone had asked why they continued to visit their Alzheimer's spouse who didn't remember them anymore and the person replied, "Because I still remember her." That pretty much sums up why we caring caregiver/spouses do what we have to do, doesn't it. We do it out of memory and respect for what once was. We do it because we have no real choice but to find acceptance for our changing status if we want to remind sane, and we hope that the example we set will one day be returned to us in our time of need.

Your party sounds like it's shaping up really nice. It will be worth the effort no matter how long or short the guest list turns out.

Jean

Fred,

Hope the home health care helps you and your wife out.

Jean

Forty years is a long time. I'm glad you decided to celebrate it with a tea. That was a great idea.

Jean

I'm glad to see your review. I didn't read the book but I've seen the advertisements and I've seen her speak on the net. I got the same impression that she was romanticizing strokes to be something wonderful. I kept thinking that she couldn't have had a very bad stroke if she could remember and record it as it was happening. That book could do a disservice to people with worse strokes who couldn't go on to do what she did in writing the book, but their families think they should be cognitively the same as pre-stroke because she seems to be.

Jean

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Nice cathartic type blog entry, Sue! It really does help to be able to read back through old entries to see how far you've come in your life's journey.

Jean

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Thanks for the comments, everyone.

Sarah,

The part that got me the most is that Don IS kind of a serial hugger and I have to help him read body language and queue him when it's not appropriate to hug. But this time he was so totally NOT doing anything to deserve this woman's reaction. I shutter to think what she would have done if he actually had wanted to hug her. We probably would have been facing a police report.

Jean

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