Just wondered if anyone had any experiences to share about caring for an elderly parent who has cerebellar ataxia? My mum is in her mid-70s, diagnosed about 7 years ago. She is a wheelchair user but her mobility is getting less and less, as is her ability to eat and drink independently. Also extreme fatigue is a problem. Her doctors have never told us what to expect in later stages. Just looking for some insight from those who have been through this.
What would happen if you're not there? Please consider a Nursing Home ! I'm in one.At 61,I was in just too much danger when left alone..Ataxia plus old age is a frightening mixture that makes 24/7 care so important..Trust me..
Please consider such options.I'm sure you love her very much...
Thanks Ozzy. This is what I desperately want for my mum, but she is refusing to move at the moment. She says she will eventually, but I think she needs to do it now. She has carers visiting four times a day, and I do what I can around my job and family, but I feel that she is extremely vulnerable. As you say, it’s actually quite a dangerous situation. Not sure how to persuade her without her feeling that I am forcing her out of her home.
I understand your worry about your Mom. Until she is ready to go to a nursing home, can you get her a personal alarm system?
I noticed that you live in Scotland, so I am not sure what kind of device you have there, but here in the USA, I have one which works on WiFi. It is a little watch like device that you wear around your wrist and in case of an emergency, you press on it and it triggers an alarm and from a little monitor placed anywhere in your house, someone will ask if you need help. If you cannot answer, they send an ambulance right away.
It costs here about $30 per months.
I have one and it has really given me and my family, peace of mind.
My mother who is 91 and very healthy but lives alone, has one too. It took me months to convince her to get it, though, but she finally agreed it would be a good idea.
I hope this helps.
Happy New Year to you and yours and good health!
OMG! That is about where I am. Mid-70s, getting harder to walk with a cane, extreme fatigue, fighting the wheelchair. I had a rolling walker, but only use it if I go out for a brief walk on my street. I really have a hard time going anywhere. Feeling badly because I miss so much.Falling more and more. It is frightening to read what may lie ahead.
The only insight I can offer is that a family member can make things much easier by facilitating what needs to be donel I employ cleaning ladies, a woman from Seniors helping Seniors, and accept help from my son who lives with me when he is home.
I am not much help, but I would be interested in the answers others provide.
I'm almost 61 and have been fighting my ataxia almost twelve years now. I use a quad cane when I leave my home, but am able to walk, extremely carefully, in my home without it, although it's getting harder and harder to do so. I agree with Cicna, a personal alarm is the way to go (I'm looking into getting one presently). Ozzy's nursing home suggestion is wonderful too, although you can't force your mom. Would she consider an assisted living situation, although I don't know what you have in your country? If I didn't have my husband's help, I'd probably have to go into assisted living... Also, Happy new year to all! ;o)
Its one thing going into a nursing home when you have all your faculties and another if you don't. If your loved one loses their faculties you would want to be very observant of the care cleanliness and feeding and treatment at all hours of the day not just visiting hours.
Remaining at home with others providing assistance with household chores is better than being in a nursing home. In a nursing home, she will probably always remain in a wheel chair and be among people with dementia to a varying degree. Your mother will be more comfortable in her current surroundings which is at home. She needs to try to walk & do exercises as much as possible & limit her time in a wheelchair to only when necessary for example when being pushed outside. Wearing a medical device for emergencies is essential. Doctors usually won't tell you what to expect in later stages because they don't know since there are many different types of ataxia and progression varies. You can probably obtain more information from a neurologist specializing in movement disorders.
You also need to have an end of life care plan in place.
Do you want resuscitation?
Do you want antibiotic medications?
Do you make comfortable or prolong life?
Take time to work through this now, rather than when something happens in future?
I would be grateful if you could share any information you receive with me,I'm in a similar situation except it's my wife and she is in her early 60's and she was only diagnosed 2 years ago.
I wish there was a place for training the caregiver in the family training for taking care of someone who is bedridden. I know convalescent hospitals send their CNA hires to a class. It would make it easier for a caregiver to know all the little things that would make it easier on both parties. I know the classes don't take very long at all because they mainly teach about cleaning the butt and changing sheets and bathing and feeding. Very few places spend much time feeding the patient because they have too many usually, It is a good Idea to be able to be visiting at feeding time. Some times they put the food down and come back later and pick it up, no time for individual feeding. They try to go faster by using a feeding tube because they get paid more and it saves time. By law they have to weigh each week to make sure they catch people that aren't eating and may be starving. Some nurses aides use a marker on the skin to see if their patients are being washed and cleaned on other shifts, some nurses are conscientious and do right but many are lazy and very sneaky. Jerry
There are good nursing homes or asisted living facilities available. You have to get references, like you do for day care for a baby/child. As a retired social worker, I know first hand about the in's and out's. You have to be vigilent in doing your homework ahead of time to make sure your loved one is well taken care of. And once you find a good place, you have to visit frequently to make sure everything is up to your standards. ;o)
Thanks everyone for taking the time to reply. My mum has a personal alarm, but has never used it even in situations where she really should have, e.g. needing to go to the toilet. Instead of using the alarm, she crawled to the toilet and then was unable to crawl back to her chair. She is unable to walk even a couple of steps, so in her own home she is either in bed or in an armchair (she’s too weak to push herself around in a wheelchair). She pays for a cleaner to come once a week. You’ve all given me a lot to think about. I thought she would be less isolated in a nursing home, but I guess being with a lot of dementia sufferers wouldn’t be ideal either. I live in Scotland where some privately-run homes have had a bad press in terms of standard of care, but most council-run (non-profit) facilities seem to be good. In an ideal situation I could afford to give up my job to look after her, and I would live in a house which was big enough to have my mum stay with us, but unfortunately neither of these is possible.
My dad was 62 when he passed away in 2012 and prior to that he was bedridden for two years after he fell and broke his hip. He stayed at home and had carers coming in three times a day to hoist him onto a commode and make him comfortable. My mum was run ragged and we all did our bit for both of them. Every six weeks he went to a care home for a week to give mum some respite and he absolutely hated it, as did we. He was getting really poorly and mum had made the heartbreaking decision to put him there full time, we were all devastated and dad said it was for the best too as he could see mums health going downhill. Before everything was finalised he got pneumonia and spent the last two weeks in hospital. We miss him like mad and the decision to put him in a home was the right decision for us at the time but are really glad he didn’t have to in the end. Do what is right for you and your family, the guilt is horrible but your mum’s health and safety is paramount. Good luck.xxx
So sorry to hear that, Gail2014. I wish it could have worked out better for your dad and your family.
Thanks Chezzamax. Im sure what ever happens it will be right for her, she sounds like a very lucky lady to have you