When I first started taking care of my little sweety-pie she was unresponsive to any stimuli and would simply droop limply and not have facial expression or any indication she was hearing anything or anyone. You could pick her hands up and they were limp. Her face was assymetrical due to the stroke. I started out for sixty days taking her outside every single day for six-eight hours, exposing her to everything imaginable, from being in a firehouse when the engines went on a run, to touching babies, to watching children, and of course, listening to my lousy singing. She had lost the will to live. I called these "Intensive life experience" days. I took her into the best stores and wheeled her through the isles. Took her to watch children playing in the park. Took her to concerts. Never left her for a minute without me holding her hand or hugging her. Watching the children was something she seemed to begin to enjoy the most. I had such fights with the agency nurses. I would bring her home and in the beginning they insisted "You're killing her!". And "her hands are cold!". I said, yeah. But she is alive, and is going to again experience life. I fired them all. To watch her laugh and smile and play today as she awaits her 102nd birthday March 12th is wonderful. And as she improved she became more fun to take care of, and the moral of the new aides improved. She is no longer incontinent and that has been the biggest improvement during the last year. And her laughter and smiles are simply magical. It is nonsense that incontinence after a stroke is forever. There is more nonsense going on about how to care for the stroke damaged elderly than I can believe. So never give up hope.
Thank you so much for your advice and encouragement. I will keep trying. My mother goes out everyday (weather permitting)..we live in snow country. The caregivers take her out to dinner every evening around 4p.m. She eats much better when they take her out than she does when she has to stay home. She loves going to the casinos we have here. Mom is up and dressed every day and taken to the bathroom. She does use Depends and Serenity pads. Her schedule is up at 9 or 10a.m...the nurses due range of motion and a little excercise at her bedside, to the bathroom, showered, dressed, wheeled to the kitchen table, breakfast...she feeds herself with her left hand..needs a lot of coaxing as she keeps drifting off somewhere..then back to bed for a nap..up at 2p.m. and out somewhere for a ride, to the casinos, to dinner, or just people watching..then home at 4:30..bathroom..cleaned up..pj's and bed
by 6p.m. She usually sleeps through the night...if she is awake around 8p.m., I turn on TV and give her a snack in bed with a tray. I am really trying what you say, but I cannot get her to take any initiative on her own. I guess she cannot do it. She has no bed movement and even if she is sweating, will not take her covers off. She can only say yes and no, and I am not sure she knows the difference between the two. She was never a very social person..she likes to watch people, but does not like to interact with them. At the AL, she just sat in her wheelchair with her head in her hand, even during entertainment.
She would acknowledge other people, but that's about it. She does not even try to talk. Speech therapy was a waste of time. She is still getting PT and practices standing and sitting..that's about it. When we try to walk with her, her balance is completely off..she leans way back and does not move her stiff paralyzed leg off the floor..it is very difficult. She is incontinent of urine, but OK with making it to the bathroom for bowel movements. The nurses take her to the bathroom every 3-4 hours. I have read your posts and all are very good...any suggestions you have are welcome. I am glad we can sheare our experiences here. The Dr's don't tell you anything. We learn from each other.
I forgot to ask you. How long have you been taking care of the 101 year old. How long ago did she have her stroke? How did you get her to start talking? How long did that take? How is her cognition? Thank you.
She goes to bed at about 11:15 P.M. and is up at 7:30 A.M. every morning. She enjoys cuddling and watching television until 11 P.M. The aides were putting her to bed at 6 P.M. and waking her at 9 A.M. before I came on the scene. This set-up is structured to induce a clot. Since she has to walk to the table and walk back (with assistance) at evfery meal, this provides a minimum of three exercise periods every day. In addition to exercise for the purpose of physical therapy. Today we watched "Dancing with Wolves", and she pointed at the wolf and said "Look at the dog."
I've been involved with my sweety-pie since she was 99, although not directly in her day-to-day rehabilitation until she was given up by a professional rehab center about 19 months ago. Her visiting nurse showed up. She was in a room alone, tied to the bed with no wheelchair and only a 25 watt light in the room. She was only being fed warm ensure. The aides would go to another part of the house and watch television all day. The nurse told me "She's 100 years old. She can't possibly benefit from visual stimulation. Let her die in dignity." It was at that point I said to this creature R.N. things I can't repeat on this board. The aides were criminals who stole her jewelry and wedding ring and who I witnessed forcing scalding soup into her mouth. Yup. I fired that one. And they would show up with colds and deliberately cough in her face. A witnessed event. And they threw out her favorite dolls. And tied her water bottle to the bedrail just out of her reach. If this was 1814 I would have called out the male owner of the care provider and did what President Jackson did. I wish dueling was legal again. There is a great deal of resentment amongst many of these foreign born aides who are jealous of whom they pervieve to be people of means. Speech took a long, long time. Five months before she said a word. I would take her outside and back and all day long, silence and unresponsiveness. There is a great deal of redundancy in the brain and I suspect it took time for other areas to take up where the older areas has ceased to function. I worked with her with alphabet cards bought from Staples every day with pictures and letters and re-taught her to read. She can only read large block letters, but reads aloud every word in sequence and clearly understands. She has a great loss of memory, but has not reached a plateau yet, and her speech seems to be constantly improving. She has good days and bad days, but all are very happy-smiley-laughing days. She has a magical smile and laugh. She cuddles up to me and wraps herself around my arm. The bad days is when she is very sleepy. She is never angry nor has she ever shown any signs of anger. Incredibly, she was on psychiatric medications (which I discarded). She watches television all day long. I keep it on loudly to develop a sense of awareness. She likes all programs except those with excessive violence. The coaxing and "negotiations" to go outside or to take a "shower" are always necessary. I suspect this is a way she retains some sense of control over her surroundings. I took her to a major hospital for a check-up in September and when the nurse brought out a needle for a pneumonia shot my sweety-pie said "I knew it was a mistake to come here." I took her home by wheelchair accessible public bus, and it was the first time she was on a bus in twenty years. On the bus she said "I'll bet you're lost and don't know where to get off". Every day I work communicating with her via the dry-erase board. The reading develops another part of the brain. Today I made her ravioli with meat sauce. The ravioli has to be cooked very softly, or she can't handle the edges. The meat sauce I prepare by browning the meat with onions and loads of garlic, then cooking it with tomato and pices for an hour, then making it VERY watery and putting it in a blender, then putting it back on the stove to boil, off the water until the sauce is of a proper consistency. I get her avocado with lemon every other day, and she recently learned to hold the half of avocado and scoop the insides out with her little spoon - a feat she is justifiably proud of. She also gets yogurt every day. And fresh squeezed carrot juice. I keep a daily trackj of exactly how much fluid she takes in. You have to be on top of the aids about this. Every time she is offered fluids a check is made in the logbook. If you don't have the aides do this you will find a day goes by and they say "she drank a lot" and in fact she drank almost nothing. Of course she has perfectly ripened banana on a daily basis. Always cut into a two-inch piece, the skin cut, and the bana re-wrapped with the skin. This is an exercise in which her fingers manipulate the food. You can use the banana to administer small quantities of supplement. For example, sprinkle the banana with folic acid from a capsule.
Thank you for the help. I will definitely use your suggestions. It seems my mother does not have the will to get better. She does not want to die, but she does not want to put out any effort to recover. She gives the impression that she wants everyone to do everything for her and she only wants to be pushed around in a wheelchair. Walking is very difficult for her. She has no balance and walking with her is not only very hard on her caregivers, but cause her to have "catastrophic reactions." We will keep trying. I also want her to walk from her bedroom the short distance to the breakfast table, and from her bedroom to the bathroom, but she puts up such a fight, I have almost given up. I also had an aide that told me "she is 90" just do everything for her..she deserves it. I know it is easier for them to do everything for her than to try and have her do it, and sometimes I feel mean for making her walk or do PT...it is a difficult situation, but I want her to do all she can for herself even if she does not want to. Thank you again for all your help. She is getting PT twice a week and will be going back to speech therapy, although the first time around was unsuccessful. Part of recovery takes the cooperation of the patient..it often seems that is the part we are missing.
One of the big problems I had was the aides "trying to do everything". And it was a problem. It is a aidepsread problem that I have observed with many other aides and different patients over the years. I told the aides that EVERY action has to be oriented towards her REGAINING the ability to use her hands and fingers, and to walk. A simple thing like the aides wiping her mouth became an issue. I told them the concept was to get her to take a tissue from the box, wipe her own mouth, and throw the tissue in the nearby trash can. She can do this now. I set up "mini-goal" for rehab, which I wrote out. This was one such "written out goal". "Feeding herself" was another goal. I write out small weekly and monthly goals, which we work towards. I had to cure the aides of the habit of continually putting the spoon in her mouth themselves. For months her hand movements were so slow and the spoon would sometimes remain motionless for several minutes. Now she eats rapidly and normally. Another partr of the brain had to take over for her to regain the use of her fingers. The ability to turn the spoon sideways to scoop up food, and then return the spoon to the horizontal position became something she was very proud of. I am pleases as punch she eats normally now. The fluids are in little two ounce cups and I wanted her to develop the abiloity to reach for the cups, bring them to her mouth, sip, and then return the cups to the tray. This was accomplished, but again, the aides wanted to bring the cups to her lips and take the cups without waiting for her to take four minutes to return the cup to the tray. I guess they thought they were being helpful. In an ordinary elderly patient they stop feeding themselves when they are tired. In the stroke damaged patient, when they stop feeding themselves, you wait ten minutes and DON'T immediately start feeding them, because they stop feeding because the muscles that enable the patienmt to swalolow are tired, and it is essential that they not be strained. They need a little rest. Tonight we watched television and my sweety-pie pointed to the television where someone was playing the piano and asked "Do you know how to play the piano?" This may not seem like much, but these questions and interactions are relatively recent, and demonstrate a quantum increase in sentience and cognition. One thing the aides did not catch on to was that there is a delay in understanding that comes with the stroke. Sort of like the delay in a jet turbines response to the throttle. I made her my "special jello" today. You mix jello the regular way with hot and cold water and add a cup of cottage cheese, put in a blender, and then back in the refrigerator. It is healthy, but more importantly. the cottage cheese thickens the jello. The thickened desert helps stimulate the swallow reflex.
It is impossible to say what is going on with another person, however the resistance to walking strikes a chord. Initially, I too had this problem. It took me a while to recognize that my sweet-heart was very frightened and would "go rigid" when we tried to get her to walk. After that I would be sure to "mime" and "point" to where we wanted her to go to. I could not just "assume" that because she had eaten breakfast twenty times and went from her chair to the wheelchair for exercise that this would be something remembered. It eventually was, but for months, this required elaborate "pantomime", pointing and patience before her fear was overcome. Initially every variance in routine was met with fear. I learned to go very slowly in everything, and make an elaborate effort to convey exactly what was expected. This included (a) writing on the "dry-erase board" (b) slow clear verbal explanations (c) pointing and pantomiming. I don't know if this would work for everybody.
The lack of curiosity for the first eight months bothered me. To create interest I set up a smal oval of 0-27 track on the folding 3x6 table we eat on, along with plastic churches and ice-cream stores and little play figures. Plus a colorful little four wheeled Birney trolley car. Then a radio-controlled missile firing tank, which we would run around her feet. The radio-controlled mouse was a bit of a hit. Also the small jewelry with blinking LED's elicited the most interesting of all responses. Do get some of these. I tried helium balloons and these created a stir. Also pictures of children. Large pictures from magazines. I tried finger painting, which didn't work so well and play-dough, which was too firm for her to manipulate. I finally found she enjoyed taking toy soldiers out of the box and arranging them on the table. The little radio-controlled dinasaurs and the cars that jump around were also a hit. Afterwards they were recycled as gifts for children.
Did your friend ever have a hard time accepting that she had a stroke? We still have to tell my dad every day that he had the stroke and that he can't walk. He gets so angry every time we tell him. I don't know if this will ever get better. I remember you saying that it took your friend a while to get her memory back, so I am still holding out hope....
She never has regained her full memory, and I never mention stroke to her. There are pros and cons to discussing this with a patient and I have no strong opinion one way or another. Her speech continues to impropve. For example tonight there was a baby on television on "ER" and she pointed and said "Look at the little baby!" and laughed. When I was working in a hospital and caring for stroke patients I would always speak to them alone and say: "I know you can't communicate, but I also know that you probably can hear and understand everything that goes on. Please understand that many people will not know this because something has happened that has damaged your brain in the part that allows you to communicate. Have patience and eventually things will get better, day by day. Don't give up hope and try not to be frustrated when you try to say words and they don't come out. Give my hand a little squeeze twice if you understand what I just said." And I would generally get two gentle squeezes.
Caregiver, I've been wondering whether your sweetiepie is your grandma or a client? Also, how much time do you spend with her vs. how much time does she spend with hired caretakers? I too have had problems with caregivers inhibiting my husband's progress. He's now beginning to stand and walk, but he stands so slowly that one caregiver wants to just haul him up to save time. It's hard to instill patience in a lively young person, but he's a good caretaker otherwise and my husband doesn't respond well to changes. I'm also amazed that your sweetie pie sleeps so little. My husband (who is only 69) needs MUCH more sleep that that, but then he's on a demanding exercuse program (Vasa Method) for hours per day, so that tires him.