Sounds like a very difficult situation for you. are they rejecting her for botox because of her age and/or dementia. If so, you certainly could take her on your own to try it. i think the cost is 1-200 per cc. If she does indeed have dementia, that is a tough road. Do want you can and what she is willing to do. good luck.
They have not informed me why she is not a candidate, however because she has been given a grim prognosis, I wonder if they are just waiting to discharge her. The CT results were not revealed to us until this week, although the scan was performed after her stroke three months ago. They are saying now that the stroke seems to have also affected the other side of her brain which is causing her to have problems with her left hand. She was able a few weeks ago to pick up a glass and drink but is now not able to do that. We are uncertain how to address possible depression. She was admitted to the hospital prior to the stroke because of obvious symptoms but the MRI showed nothing. She was sent home and then returned because of increasing difficulties. The major stroke occurred in the NICU the second night of her stay. I was told she was not a candidate for the clot busting drug, tpa. I would like to know why there is such an ad campaign out there for you to rush to the hospital if as I was told, she could not have the drug and that it only is useful in a minority of cases. All of this seems very confusing. Thanks for any advice anyone can offer me at this point in time.
I forgot to tell you. My mother is also on Prozac for depression, with no side affects...seems to help a little, at least she is not crying all the time. As for the spaticity and tone in her affected side, we ARE doing Botox treatments. If your mother has spaticity SHE IS A CANDIDATE FOR BOTOX. Medicare WILL pay for it. You have to go to a Neurologist and tell him you want it. My mother could not get her foot/ankle into her AFO (ankle foot orthotic) due to spaticity. She cannot stand or walk (with maximum assit in walking) without the AFO. She cannot even do transfers without the AFO. So if we could not get the AFO on her foot due to spasticity, she would be bedridden. She gets shots in her calf area about every 3 weeks and in her arm and wrist about every 3 weeks, alternating between calf and arm. If she does not get it in the arm, her hand fists up and she cannot open it, no matter how much PT we do with it..if she cannot open her fist you run into more problems, nails digging into palms of her hand and fungus from mositure in the palm. DEMAND THE BOTOX!!
Thanks so much for your post. I am so sorry for what you have been through. I am very aware of the danger of caregiver stress. My sibs will be backups and for now we have an agency. Until I am there, I won't know how well that will go. I will keep everything you said in mind, including the Botox. My mother, like yours, was independent prior to the stroke and her personality sounds a little like your mother's. I will be handling things on my own with the help of the cna's, friends, a few relatives. I am moving there from another state and bringing a bike and a horse eventually. I hope with the help of others to do a little of those recreations to maintain some sanity. I know I will be giving up my life for a while but it was that or put her in a nursing facility which she detested. I know how those places run having done some home care as a respiratory therapist. She has not been very responsive lately. Her CT scan indicated white matter disease which explains some of the memory deficits over the past year. The acupuncture I have read about as being effective for stroke was specifically scalp acupuncture. I think the foremost doc is in Calif--San Jose, Zhu's Scalp Acupuncture. Have you tried this? I did not care for the doctor who told me Mother does not need Botox. I have never been one to take no for an answer without good reason. Anyway thanks again for your support.
I hope my experience can help you a little. I am 60 years old,
live in California. My mother was 87 when she had her stroke, she is now 90 and will be 91 in March. It was a very serious clot, the Dr. said it affected about 70 % of her brain. She is left right side paralyzed and has aphasia (she cannot speak, read or write). Her cognative skills are minimal, she cannot even tell yes from no. Prior to this she was independent, living in her own home in San Francisco. She fell on her neighbors stairs when she had her stroke, they called 911, she was taken to the hospital. My husband and I drove up from SJ about 50 miles away. When we got there, the nurse told us, "it was not a bleed, but it would be too dangerous for her to do TPA" I also do not know why they would not do TPA, was it her age?, was it that they did not know her medical history? Anyway,
they just let her "stroke out," which left her in the condition she is in today. After 3 days in a Kaiser Hospital (HMO), they told us she would have to leave. We either had to take her home or put her in a nursing home. Of course, this turned our world upside down. We had no choice of nursing homes. We had to put her in the only one that had a bed in San Jose near our house. We were in shock. This was after she had failed three
swallow attempts in the hospital. They were going to put her on a feeding tube. They were testing her swallow with ice chips..this is WRONG!! finally a speech therepist tested her swallow with a thickened yogurt type mixture. Mom swollowed pretty good. We were saved by the bell, right before she was to have the feeding tube put in. Off to the nursing home..more problems of course. Mom would not do any physical therepy, speech therepy or occupational therapy. My husband and I were there every day and night. Mom slept most of the time, which they do after stroke. All we heard was "Medicare Guidelines". That meant if she didn't do physical therepy etc. she would have to go home or go into "long term care." which Medicare would not pay for. She had to show "progress" or get out of rehap. Well she developed pneumonia, but the Dr. at the nursing home who was supposed to be there but never was perscribed Robitussen. A little CNA finally told me Mom had pneumonia and to DEMAND a chest X-ray..which I did. yep she had pneumonia..got that cleared up and they were ready to send her home. I argued and fought for her to stay in the nursing home and get physical therepy as she could not do it before when she had pneumonia. After a long hard fight they kept her a little longer, but still no progress. While all this is going on, Mom is depressed, crying, apathetic and not trying at all to do anything. The nursing home is parking her in the lobby every day so they can babysit about 12 people at once, they were NOT keeping track of her BM's or anything else that was going on with her. The Dr. could never be found. I knew we had to get her out of there. We got her into an Assisted Living Place, very expensive $4500/mo. Medicare does not pay for this. She stayed there approximately a year with my husband and I there both day and night, since Mom could not speak, she could not ask for anything, so they ignored her or forgot her in her room. We had to be there ALL the TIME. I had to quit my job. My husband went there after working all day to see she got dinner. We hired our own physical therepist who was very good, but still no cooperation on Mom's part. She was either depressed, obstinant or apathetic. I took her to accupuncture
many times..she fell asleep on the table. These accupuncturists were supposed to deal with people with stroke.
Well they told me she needs to walk and more DUH!!! I knew that, but try to get her to try. The accupuncture worked slightly on her speech BUT IT FADES. In other words, after a treatment she would try to speak for about two days, then nothing again. We finally gave up on that. Speech therapy was
also useless. Mom could not do it and was not willing to take their tests. She could say the days of the week and count. It seems they can do anything from ROTE or AUTOMATIC memory. After
a year of Assisted Living, my husband and I could not take it anymore. We moved us and Mom to our vacation house which was bigger than the one in San Jose. I hired a caregiver from an agency. Now the agencies are another story. They charge the family about $26/hr. and pay the caregiver $8/hr., so they are ripping off the family and the caregiver employee. They could not keep the shifts covered and usually sent out "babysitters" not "caregivers". Babysitters do not want to change Depends and usually don't want to cook, do physical therapy or "work in general". They just want to sit and watch TV, while you go shopping etc. All the work is still up to you!!.. A caregiver does change Depends, do showers, cook for the patient, write a log, keep track of BM's and medication. After a while with the agency not being able to cover the shifts for send qualified personnel, I started looking on my own and found that qualified caregivers were very happy to work for $14/hr, not $8 and were happy to have to take care of only one person not 10. My advice to you to find caregivers is to advertise in nursing homes and hospitals. There are people out there who love this type of work, believe it or not. On top of all this moving Mom in with us was also very,very stressful. Although she was majorly disabled, she still maintained her personality. She wanted to be the boss, did not want me telling her what to do and does not want to do anything but lay in bed, be fed, washed, and wheeled around in a wheel chair. Trust me on this and don't forget it YOU CANNOT DO THIS WITHOUT HELP AND DO NOT FEEL GUILTY THAT YOU CANNOT DO IT. I know she is your mother, but taking total care of a person by yourself will SUCK THE LIFE OUT OF YOU AND YOUR FAMILY AND YOU WILL DIE BEFORE HER.
Mom is still with us. I have 5 caregivers that work different shifts..all from 9-5p.m. My husband and I have her from 5 at night until 9a.m. She sleeps all that time. She does not want to be part of the family and will not eat with us. The caregivers take her out to eat..don't ask me why she will not eat at home. Taking her out just costs us more money. I know I sound a little resentful and I am. My mother could not make this more difficult on us if she tried. My husband and I have given up our lives and our privacey in the house. We cannot go out after 5p.m. at night without hiring another babysitter which often is too much trouble. The caregivers cost us approximately $2900/mo., plus heat and electricity is up to keep Mom warm and her laundry going 24/7..she is of course incontinent. I have learned A LOT ABOUT STROKE in the last 4
years. If I can be of any help to you, please let me know. I know what you are going through and I KNOW IT IS HELL. My heart
goes out to you, as I have been through it. PLEASE, PLEASE,
THINK OF YOURSELF FIRST AND DO NOT FEEL GUILTY.
The fact that you were a respiratory therapist gives you a real
headstart on knowing how to handle doctors and what nursing homes are really like. I had never even been in a nursing home
before Mom's stroke...whew, what a shocker. Anyway re the accupuncture, I happen to have a San Jose phone book here and there is a Zhu's Acccupuncture Medical and Neurology Center at
100 O'Conner Drive in San Jose...this is at O'Conner Hospital,
their phone is 408-885-1288. I took Mom to an accupunturist who
also specialized in stroke..they put the needles in her scalp,
face,tongue,leg, ankle. It did help a little, but not enough to
make any difference and it the effects did not last. We went
twice a week for over a year while in San Jose. If you go ahead
with this, I would be interested to know how it works for you.
Keep in touch. Good luck and take care.