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Archive for August, 2008:
A Look at Adult Day Care - Youtube Video
In an earlier post, I talked about finding an Adult Day Care for Gladys. I found this video on Youtube.com. It is a wonderful look at what is available in Adult Day Care. This facility and its programs are very similar to the Cobb County Senior Adult Center that Gladys attends. Every morning she looks forward to getting up and going to the center.
If you have been wondering what an Adult Day Care is like, take a look at this video.
Esse Adult Day Care Overview
If you are interested in adult day care but don’t know where to look, check with your county offices or aging information services to see what is available in your area.
New Caregivers’ Exhaustion - Down But Not Out!
When Gladys first arrived to live with us, I was not quite prepared for the exhaustion I was about to experience. It was much like when I brought my oldest daughter home from the hospital 35 years ago. I was constantly checking on her, I could hear every movement and sound that seemed different coming from her room.
The first week Gladys was here, I slept with the baby monitor by my bed turned up fairly high so I could hear if Gladys needed help. Unfortunately, I could also hear every move, every snore and every fly buzzing over the lamp. I bet I ran up and down those three flights of stairs at least six or seven times each night. By the third day I was exhausted, both physically and mentally and it didn’t help when Gladys fell out of the bed that first week. Fortunately, she was not injured.
Nikki kept telling me to turn the monitor off and go to sleep, that Gladys would be OK. She said when Gladys first came to live with her that she did the same thing until a nurse friend of her’s told her to turn the monitor off. I heard what Nikki was saying but I was afraid that Gladys would need help and no one would hear her, especially since Gladys is on the ground floor and we sleep on the third floor. At Nikki’s house when all was quiet, she could actually hear into Gladys’ room because she was only one flight up.
Gladys has been here now for two months. The baby monitor is still on but it is turned down and I have become immune to irrelevant noises. I do hear Gladys when she needs help and I go downstairs to assist her. Most nights I also go down to her room at least once to make sure she’s not too close to the edge of the bed. I’m sleeping better and am not exhausted - tired - but not exhausted.
I know I’m not the only person to experience this but I wonder how other people handle similar situations?
Taking Care of Chris: Living with an autistic adult-child
This Post is from Barry and Helen Setterfield. Barry is an astronomer and physics researcher, Helen is a researcher. I met Helen on Askville.amazon.com and asked her to share their story about Chris.
Our youngest son, Chris, had encephalitis when he was three. He will be 24 this September. The encephalitis left him with an IQ that is un-measureable; i.e. less than 20. His body, however, is very healthy and active! It makes for an “interesting” combination. He cannot speak, although he loves music, will always be in diapers, and is autistic. The part of his brain that does not seem to have been damaged directs him on how to sneak food….
So we had a special two room ’suite’ built on for him, with his own private play yard that has artificial grass, an adult swing, and a small exercise trampoline (the kind that is only about six inches from the ground).
Despite years of teachers in school trying to teach Chris to sort, so that he could be employed by some kind of workshop, the idea never gelled with him. So now he is ours 24/7. It’s hard, but we love him. He is not lacking in personality!
This is the only picture I have of him that I can show you right now. It was taken a year or two ago when we forgot to lock the fridge and he got into the chocolate sauce. The sign behind him is one I gave my husband for an anniversary a few years ago, and reads “And they lived happily ever after.” We feel that way!
We have a bungee lock on the refrigerator (he learned if he yanked the toddler ‘lock’ hard enough it would strip right off) and the walk-in pantry has a reverse knob so we can lock it from the outside. He has not figured out that idea of turning the center part of the handle to release the lock. We also had to put glass sliding doors on our open shelf spice cabinet….peppercorns roll so beautifully and Mrs. Dash and cinnamon sugar taste so good…..and besides, it’s fun to undo caps from things and if they spill sometimes…..
When he learned that he could push the glass doors to the side and still get at the spices, my husband cut two narrow plastic plant stakes to proper lengths and we put them in the glass door tracks to prevent them from being opened by him. He has not figured them out yet…
We had two wrought iron scroll gates that have magnet latches built which are separating parts of the house so that we can let him into some parts at some times if we are there and prevent him from going further. He has not figured out the magnetic latches. I pray he never will.
We take him on either rides or walks every day, but mostly he is very happy on his own, rocking back and forth, thumbing through old magazines until they are shredded and listening to music on his own CD player (which is put high up so he cannot fiddle with it and break this one, too….)
We have reversed the knob on his bedroom door so we can lock him in at night. That may seem cruel, but the last time he got out, there was Tang powder all over the kitchen floor, he had shared a loaf of bread with the dogs, and the ashes from the wood stove (I still thank God we had not used it the couple of days before) were all over the family room. He had also stuck a plastic baggie with some sugar in it in the microwave and hit the buttons enough times to turn it on and we had melted plastic and caramelized sugar all over the inside of it. So he gets locked in for his safety and ours. We do have an intercom connected from his bedroom to ours so we can hear if there is a problem.
We are blessed enough to have a guest house on the property, which is connected by a breezeway to our house. The county gave us permission to install a complete kitchen so that we can use it as a caretaker’s flat. There is a couple living there who help with Chris so my husband and I can have some time off. She watches Chris from 1-3 p.m. five days a week and they take him for one evening a week so we can see friends or go out to dinner or just relax on our own. In return they pay no rent, but do pay for their own utilities. They are also wonderful help with the yard and other jobs, which was not expected, but they are really sweet people.
Chris is on SSI, so that’s not a lot of income and basically means he is not a financial burden on us, but it’s no way to get rich! His diapers are paid for, too which is a big help. His medicines are covered as well. So once the financial outlay was made for his two rooms and the guest house (and the gates), he is basically paying for himself. Of course, there are the little things. He has figured out ’stacking’ and ‘balancing’ recently and so he was stacking all kinds of things in the kitchen and when he opened kitchen cabinets and started ’stacking’ our good plates and glasses.
My husband got this desperate look in his eye — so yesterday he went to the hardware store and bought about ten sets of child-proof cabinet latches and they are now installed on every cabinet in the kitchen. This irritated Chris to no end, so he went into his room and dumped the baby powder all over. That’s going to teach us, right? I’m laughing. He’s a real challenge.
We do get a rather minimal amount each month in financial help as his ‘caretakers.’ He ‘employs’ us via a community resource helps program. Again, though, it’s no way to get rich!
He needs his diapers changed about every two hours, and meals three/four times a day. He tends to get eczema on his hands so lots of lotion to keep them lubricated. He does take one of us by the arm and leads us to the refrigerator when he is hungry….again. He has certain tunes that mean something to him. “Michael Row the Boat Ashore” means he is wet and needs changing. How he latched on to that one for that purpose still cracks us up. He kind of “yah yah”’s the songs. The two songs that seem to mean “Mom” (me) to him are “The Ashgrove” and “I Can’t Do the Sum” (the latter from Disney’s Babes in Toyland).
My husband’s ’song’ is “This is the Day that the Lord Has Made.” But Chris probably knows about three hundred songs and has this trick of trying to get you to finish a song he starts. He will yah-yah the first few lines and then stop and look at you. You are supposed to finish it. He has us pretty well trained; we usually do.
Caring for a family member is a mindset as much as anything else. Because of Chris we have so much, and have had to give up so much, too. We ‘transformed’ our yard into walk-through gardens so that we could feel like we were living in our own resort. We have some rescue horses in the back barn and acre which keeps us busy as well. So we love it here, but we made it a place we love so that we could continue to care for Chris.
I tried to institutionalize him when he was fourteen. It lasted two months. In that time he developed eczema on both arms and legs, lost weight, his ears were crusted with dirt, his hair was not cut and one time when I changed his diapers myself there was dried feces on his rear end. That was it. I’m Mom. I signed him out, brought him home, and here he will stay until something makes it impossible or someone dies.
It’s hard. It’s worth it. It can be funny, frustrating, exhausting, rewarding…..it’s never dull. We love him.
