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.

I can't believe it's been almost 10 years since Don's stroke. It happened in May of 2000 and we're already gearing up to have another 'Thank God I'm Alive' party like we did on his 5th anniversary out. Wall washing is in progress. The guest list is on Don's mind and yesterday we made a trip to a party store specializing in bulk food to scope out prices. We'll invite about 60 people. After the store, we went to a local bookstore where my wheelchair bound, aphasic husband was so being so silly I was afraid he'd get us kicked out. If you want to read about the bookstore trip check out my blog entry at: Wayward Husband

. I'm just returning from a two week pity party. You know the kind where you don't think you can handle one more metaphorical---or real, for that matter---hangnail. Giving myself a sharp "get over yourself, everyone has problems" usually keeps pity parties off my property---I'm generally an upbeat kind of person---but not this time. This time, four out-of-place vertebrae were playing sadistic games with the nerves running down my leg and they threw open the front door inviting the pity party pack to camp out in the living room. Woo is me! The cry fest started and the tears were only interrupted with occasional outbursts of succulent statements like.... Click here to read the rest. .

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

If you want to feel old really fast get a new digital camera. At least the one I just got is making me feel that way. It came with not one but TWO user guides and some of the pages have such small print that I have to use a magnifying glass just to read them. Worse than that, the camera has a mode dial with tiny icons on it and without my handy-dandy magnifying glass I'd never know those little suckers are suppose to represent things like: portraits, night shots, indoors, landscapes, movies and a bunch of letters I've yet to decipher. It even has an icon for aquariums. Aquariums! Who needs that? What I want to see is an icon for starting my coffeemaker in the mornings. To read the rest of blog this entry click here. Since my last update here at Strokenet, Levi had his first birthday and he's blogged about all his first year accomplishments and goals for the future. Click here to see how much he's grown. Even angel Cooper came back for a visit. link here. Things stroke-wise and caregiver-wise have not changed much since my last update. Don is still being Don, the wheelchair bound stroke survivor with the vocabulary of a one year old. And I'm still being Jean, the woman of the house who would rather play on the computer than do housework. We still get out every other day to run errands and go to Don's favorite restaurant. It's a little mama/papa place where the waitresses don't mind how many times he tells them they are 'cute' or how many times he wants a hug. Yes, impulse control is still a challenge in his catalog of stroke deficits. LOL All in all, we're in a good place. Don's stroke is a part of our lives but it's not our lives i.e. we're not living the stroke day in and day out. Those of you who have found acceptance and moved on will understand exactly what I mean. Jean .

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

It must be old home week around here. It looks like I'm not the only long-lost member catching up their blog. We've had a busy fall since I last updated my blog over at Bloggers. My newest entry is about our woos in spending eleven months dealing with Medicare over Don's wheelchair replacement and about us potentially becoming one of the latest victims of the Wall Street crisis. Read "Old and Obsolete" here. For pet lovers, our dogs have been prolific in sharing their unique views in their blog of living in a post-stroke world with Don and me. Levi has been a joy with his spirit, energy and kisses that are given in a way only a puppy with a long, wet schnauzer beard could do. I swear he washes his beard off in his water dish then comes directly from the bowl for smooching time. To read Levi, click here. My favor story of Cooper's can be found at: Devil Cats. For some very funny dog photos Levi shares his favors here. I think of this place from time to time but don't read here much anymore. I can't say why it doesn't hold my interest anymore but it doesn't really matter because we're doing fine in the "real world" now and that feels good. Wishing you all a great Thanksgiving week and hope you all find what you need to be happy and healthy. 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

We went out for pizza with old friends last night which was both a happy and sad time. Happy because it's always great to see old friends but sad because it accentuated yet another growing post stroke problem..... Click here to read the rest of this blog entry. I haven't been blogging much for myself but the dogs have been really active, even won several bloggers' awards in the process. You can read up on their adventures here. I recently got a job offer writing articles that evolved out of that article I wrote last month for the contest with a $5,000 prize. I didn't win but someone happened to see my entry, liked my writing style and contacted me. The money offered isn't bad but I haven't decided, yet, if I want to get involved writing on a someone else's schedule. Until next time.... 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

This one is a reprint by special request of Sue.... Have you ever wondered why it is that some people who have so little are able to sincerely appreciate what they do have while others who have so much can

. Yesterday Don and I had a half hour 'conversation' about something he really wanted to tell me but the only words he could get out during the entire time were: feet, baker, dad, and gone. Click here to read the full 'aphasia and apraxia challenge' blog entry. Another recent entry, Summer in Caregiverville, can be found here. On another note, my 'Levi and Cooper Chronicles' blog has been keeping me very busy and that has earned me a nomination for an 'Awesome Blog of the Month' award in a community of 850 dog blogs. Click here if you want to check it out. It's not just about the dogs. Don's stroke and caregiving have a way of making their presence known in some of the entries. Until next time, 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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