Caregiver Respite

I received the following e-mail from an internet friend who asked me to share it. It has some great resources that I'm happy to pass on via my blog.


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Hi Jean,

It's Lincoln from Connectingcaregivers.com. I know how important it is to take breaks from caregiving in order to recharge your batteries. There are a few options if you are looking for respite care, namely;

In-home respite
Specialized facility
Emergency respite
Sitter-companion services
Therapeutic adult day care

Here is a list of some respite resources that I know have been very helpful to family caregivers.

Easter Seals
800-221-6827
http://www.easter-seals.org

Faith in Action
877-324-8411
http://www.fiavolunteers.org
info@fiavolunteers.org

Family Friends
National Council on Aging, Inc.
202-479-6672

National Adult Day Services Assocation, Inc.
866-890-7357
http://www.nadsa.org

National Respite Coalition (NRC)
703-256-9578
http://www.archrespite.org/NRC.htm

I'd like to leave you with this quote I found recently.

"A single sunbeam is enough to drive away many shadows."
~ St. Francis of Assisi

Best,
Lincoln N.

PS: I'd greatly appreciate it if you could forward this message to other family caregivers.

You can sign up for the newsletter at http://connectingcaregivers.com/familysignup

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Accepting the Failings of Age and Disbilities

Today we went to the sight-in day for disabled deer hunters. The two year old program is run by a small army of volunteers who help people in wheelchairs get out in the woods during hunting season. They use specially made blinds and each disabled person is assigned two hunting guides who stick with them and are not allowed to hunt themselves. The group also puts on a weekend long deer camp where the disabled guys can all sit around doing guy things, something that is often missing in the lives of men who use wheelchairs.

Don went on the hunt both years and he was looking forward to going this year but today he didn't pass the gun safety test. Cognitive issues. After the three gun safety teachers made their ruling I had the job of telling Don. It was hard on the guys to fluke him. They all like Don a lot but it's not fair for him to tie up two guides and a blind in the woods if he's not going to hunt. They have a waiting list to get into the program because they can only take 30-32 hunters into the program.

On the way home, I asked Don how he thought he did on a scale of 1 to 10 and he said a five. Then I asked him if he would be surprised if I told him that he flunked the safety test. He answered, "Don't know." He took it pretty good when broke the news---sad, of course---but he's always been a stickler for gun safety so I was able to use that fact to explain it to him so he could accept it. I told him that he's hunted a lot of years with a good, clean record and it's better to leave the sport that way than to take a chance on marring that record with an accident. He got two bonus years after his stroke that we never would have dreamed possible and I told he has to celebrate that fact.

It hasn't been a happy evening and it won't be a month filled with anticipation like it's been the last two September/Octobers. But he does have a consolation prize. They asked me if I'd like to volunteer at the deer camp so Don can come along and hang out as the hunters and their guides come in and out and at after dark for the bonfire and dinner. He seemed to like that idea today but who knows if he'll feel the same way tomorrow or the next day when this all sinks in. I'm a little worried about depression catching up with him someday as little chucks of his freedom and personality get chipped away like this. Of course I say this every time there's another little loss like this but somehow he manages to keep getting up every morning happy and singing at the top of his lungs. How does he do that---find acceptance of the failings age and serious disabilities? ©

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Life Goes On......

Life hasn't changed much for us this summer. Don is still happy and singing the words "Jesus loves me" and "boom, boom, boom" over and over again each morning and sometimes in the afternoons. Recently I told him if we were sharing a room in a nursing home I'd ask for a room change. He laughed and for the next hour he sang the scales using just the syllable "la, la, la, la, la, la, la." He wants to talk. He can't, so he sings. So I use my ear plugs to keep my sense of humor from falling out of my head and to keep his happy tunes from getting in.

It seems a little weird not to be in back-to-school mode i.e. for Don to be starting speech therapy classes now that the colleges are in session again. We could actually go back to group class but with Don's hearing loss making it so hard for him to know what is going on in large, noisy rooms it would be a waste of time. And individual classes are not available to him anymore. He's not unhappy about it, though. Every time we go past the college Don hums the "Pomp and Circumstance" graduation song with much gusto and volume in his voice.

I've been very active on the political sites the last few months---like a crazed lady debating other crazed people out there in cyberspace. Don and I used to enjoy the political back and forth each election year but now it's just me venting to him and him agreeing with me. I tell him what the buzz is in cyberspace and he seems to enjoy living vicariously through me as I have all the fun. If I'm especially upset over something or on an extra high, so is he. It's kind of nice having this tiny connection with the past and how we used to like to talk politics late into the night.

We're lucky that we've been able to get out every other day all summer. The local Starbucks people know us as Mr. and Mrs. Caramel Macchiato, Decaf Coffee Tall. Even the puppy gets to go there and get a tiny cup of whip cream. He keeps his blog up better than I am keeping this one up. If you ever wonder what happened to us, check the dog link in the right hand column and he's sure to have something to say about life on the Planet Aphasia. ©

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Mid-Summer Update

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---Don's isolation. His ability to stay focused on our group and participate in conversation was severely hampered by the hearing loss he received last fall at the Disability Deer Hunt Sight-in Day. A volunteer helping Don didn't make sure he was using ear plugs so now in places where there's a lot of background noises, he can't follow the thread of conservations. Even without background noises it can be a challenge requiring me and others to repeat things three or four times. Part of that is aphasia/language processing issues from the stroke but most of it is that damn hearing loss. The audiologist says there's not much you can do about that type of hearing loss because it's to the center nerve and turning up the aids only makes the background noises all the more annoying.

It's sad because the stroke itself robbed Don of so many opportunities for social interaction like not being included on house party guess lists because the location aren't wheelchair friendly or because old activities we used to do with other couples are no longer a commonality that bind us together. Since the sight-in accident Don can't even successfully "talk" on the phone anymore. In the past he used to enjoy listening to friends and family talking about their lives. Now, he ends up putting the phone down about half way through the call. Thankfully, he seems to be handling his growing isolation fairly well but that doesn't stop me from feeling badly for him. He used to be so engaged with people both before and after the stroke until recently. It's like watching a falling star and holding your breath knowing eventually it will burn out.

But we're keeping busy, almost too busy for my tastes. We're out of the house every afternoon doing what we can to enrich our lives---shopping, going to local parks and free summer concerts, going to restaurants, art shows and the YMCA, giving the new puppy playtimes and taking him to obedience classes. It's easy to keep busy in the summer.

I'm taking two aquatic pool classes when I can fit them in. One is jazz dancing. The instructor actually incorporates dance steps from all the decades of my life and they bring back some great memories, listening to the music that goes with the exercise. The instructor for the other class combines boxing, kick boxing, cross country skiing and belly dancing moves. When I get finished with that class I'm energized and ready to take on the world. Where's my Wonder Woman costume when I need it? I could wear it home and feel like I'm appropriately attired. But as the day wears on my aches and pains remind me that I'm still an old woman. Such is life. We dream of Nirvana and even achieve it from time to time then we slip back to where we began leaving our Zen living-in-the-moment pleasures behind. ©

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The Long, Hard Road to Happiness----

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’t appreciate it at all? We all have an occasional blue day from time to time when the pity pot seems to be the most comfortable chair in the house. I’m not talking about those fleeting times where at the end of the day we stand up and realize we’ve worn a big red ring on our butts from sitting too long where maybe we shouldn’t have taken up residence in the first place. I’m talking about the general approach that some people have towards life itself where their negative disposition mistakenly makes them think that their pain and disappointments are always worse than their neighbor’s pain and disappointments. I’m talking about falling into the trap of using pessimism versus optimism as a general philosophy for living.

I’ve always been an optimist. Even in my darkest hours I’ve been able to recognize that wallowing in negative thoughts won’t help me climb back out of the muck of any given life crisis that all humans, at one time or another, go through---death of a loved one or a falling out with lover or friend, major disappointments and depression, loss of good health. For me, getting back up after a punch in the gut comes from being able to see that my metaphorical glass of life is half full---not half empty. It’s a personality flaw that I have to struggle to have sympathy for those who spend their entire lives describing their glasses as half empty. Sure, I understand that we’d all like to have our glasses over-flowing but more importantly I also understand that those times when they are over-flowing are as rare as penguin eggs in the desert. The optimists will tell you that the adversities we meet while we’re striving towards that goal is what makes a person strong and that our heartaches are what makes love---when it comes along---all the sweeter. The pessimists, on the other hand will throw in the towel the first moment things don't go their way and they walk around in circles like both of their arms are tied behind their backs. They delude themselves into believing that they have no control over their own happiness.

It must be hard being pessimistic, to aimlessly drag those woo-is-me thoughts and resentments around where ever they go. Optimists, on the other hand, achieve more in life---have more, are loved more---not because some divine intervention sprinkled magic fairy dust on some of us and not on others. Optimists achieve more because they don’t give up on themselves the way people with a defeatist attitude do. Pessimists don’t see each new day as a ‘do-over’ that can change the course of their personal history. They are so busy cataloging yesterday’s losses and tomorrow’s grim predictions to realize that they are stealing their own futures in the process. Pessimists are chickens, plain and simple. They are too afraid to roll the dice, take a chance and give up their defeatist attitudes long enough to work as hard at being happy as they work at being miserable. Nothing comes without a price tag, happiness included.

Life is full of hardships, challenges and heartaches for all of us and I am very proud to be married to a stroke survivor who never gave up on himself even when the medical community did. We---not just him alone as some survivors would have you believe of caregivers--- WE worked hard and proved the diagnosis of ‘vegetable for life’ wrong in every sense of the phrase. Some people out there in the stroke community don’t believe that it’s possible for someone who can’t walk, talk and use one arm to truly find joy in living again. That, to me, is both a sad and an arrogant attitude because it says that those non-believers value perfection to the point of being prejudice towards anyone who isn’t physically or mentally perfect in their eyes. I won’t deny that it’s often been a long, hard road getting to the happy place we reside in today and if that happiness annoys the pessimists of the world then I say, “Either follow me or get out of the way."

Jean Riva ©

No matter how bad things are, they can always be worse. So what if my stroke left me with a speech impediment? Moses had one, and he did all right. ~ Kirk Douglas

No pessimist ever discovered the secrets of the stars or sailed to an uncharted land or opened a new heaven to the human spirit. ~ Helen Keller

Optimism is a happiness magnet. If you stay positive, good things and good people will be drawn to you. ~ Mary Lou Retton

Winning is a habit. Unfortunately so is losing ~ Vince Lombardi

painting by Henri Rousseau

The Aphasia and Apraxia Challenge for Caregivers

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. And, of course, 'yes' or 'no' as answers to my questions. When my questions got too far off track to what he wanted to tell me, he'd repeat those four words as if saying them over and over again, with increasing the volume, would bring me perfect clarity.

Those of us who routinely deal with someone with severe language disorders know that we start our guessing games with generalities, trying to pull out more details in hopes they will lead us where we need to go to understand what our care recipients are so intent on telling us.

"Is this about something you just read or saw on TV?" ---- No.
"Is this about your dad?" ---- No.
"Is it about someone you know personally?" ---- Yes
"Relative?" ---- No
"Friend?" ---- No
"X-coworker?" ---- No
"Neighbor?" ---- Yes

Thank God, we had a meaningful clue! Then I listed all the places Don had ever lived and found out that the neighbor was from his childhood. I did a mental groan because the stories from before I knew my husband are harder for me to pull out of him than the stories from time frames when we have some shared memories. But he is stubborn and so am I and I've learned since his stroke that there is no way we're going to avoid this aphasia/apraxia driven dialogue. So I sat down for the siege, knowing nothing in the world is more important to Don at that moment that getting me to understand the connection between those four, tiny words: feet, baker, dad and gone. It was at that point that Don did a gesture with his hand, like drawing a knife across his feet and he repeated the word: gone.

Over the half hour I was able to figure out that a neighbor kid of his from when they were both approaching their teen years was held down by one guy while another axed off his feet. Don somehow knew the people who did this to the kid and he told his dad which resulted in the bad guys getting hung. Why this story was on Don's mind is still a mystery. I asked him if he saw something on TV that reminded him of the event and he said, "No." I was afraid to dig too deep into whys and wherefores for fear it would take another half hour to figure it out. But I was curious. I still am and if his brother was in town I'd probably call and see what he knows about the story.

It occurred to me afterwards that if Don had told this same story in his pre-stroke days he would have drawn it out with rich details and made the story last the same half hour that it took to tell it now in his post-stroke language disorders way. He was a gifted storyteller with a million stories like this one and he hasn't lost the desire to share them. The difference, though, is that now the 'listener' does so much work to draw the bare bones of the story out that it's mentally exhausting. All of us who have been there, done that know exactly what I mean. ©


P.S. Some of you might remember that I entered a writing contest a while ago that had a $5,000 prize. I didn't win---didn't really think I would---but here's a link to the article I wrote for the contest. I'm proud of the way it turned out. Disaboom: a Web Company Making a Real Difference to People Touched by Disabilities.
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Summer In Caregiverville

The days of June have blended one into another. Finally some warm days to alternate with the rain we've been getting have come to our corner of the world. The beginning of summer, for us, is marked by the first of the Blues in the Park series and by the start-up date for the Farmer's Market both of which happened this week. Summer is here and we don't even have plans beyond attending these two weekly events, raising a good puppy and contracting to have a couple of rooms painted. I should plan something beyond the normal rhythms of summer but between the cost of gas and the cost of getting older I don't seem to have the desire to seek out any more fun under the summer sun. We'll probably throw in a couple of art shows, a small town fair or two and call it good enough.

The new puppy, Levi, sounds like a herd of buffalo thundering across the carpeting as I write this morning. He litters our house with a dozen stuffed toys plus chew sticks and three balls. Several times a day I pick them all up and put them in his toy box in the kitchen and after nap times he gets them all back out again. Even Don is getting more puppy related exercise. As he makes his way across the floor in his wheelchair he's learned how to kick and pick the toys out of his path. Annoying as that must be for someone in a wheelchair, the puppy has been worth the effort. Don and Levi have already become barking buddies, much to my displeasure. The puppy is a schnauzer, a breed given to barking too much if you don't nip it in the bud. But what are you going to do with a guy with very little language at his disposal who enjoys interacting with the dog in their little joyful bark-offs? You make a half-hearted attempt to discourage the barking but you know that neither dog nor man will listen. I bond with Levi through training, exercise and feeding. Barking like two wolves in the wild is their bonding thing.

So I work at training Don not to bark at Levi when he's in the middle of transferring in or out of his wheelchair for fear the dog will bounce on him and push him over. It seemed to be Levi's favorite time to start their barking ritual. It's likes he's saying, "Hey, you're on your feet anyway. Come play with me." We've worked so hard at getting Don's transfers strong, dependable and independent again. Since last fall, really, and now that we've been going to the YMCA and working out, his transfers have finally become all three of those things and if not for the puppy I wouldn't STILL be on stand-by duty during transfer times. Life is full of ironies, isn't it? ©

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