Mum had a stroke 12 years ago which sadly left her paralysed on her right side, unable to speak properly and with limited cognitive function, Dad was her main carer with me helping out as much as I could whilst I was still working. Things were going Ok until 2018 when Dad’s health started to go downhill, he was diagnosed with CIDP which reduces nerve function in his lower legs, on assessments for this he was diagnosed with Parkinson’s in 2019, by the end of 2019 his mobility had decreased to the point where he needs a walker and his cognitive function began to deteriorate rapidly, by mid February this year I had no choice but to come and stay full time with them whilst I tried to sort things out. I had already left my job to care for them @8hours a day with them and on call for the rest of the time by mid 2018.
Social services haven’t been much use - I swear if I hear a ‘aw it’s really difficult’ I will scream and the stock answer- your Mum and Dad are self funded so there’s nothing we can do, they did send me a price list for local care companies, the last contact with the social worker was left with a - keep me updated with what happens - I haven’t done that, I must admit it feels like its really not my job to write her notes for her
Dad is awaiting the Memory Team assessment, the GP has tried to get something going even over the phone or by video link but because of the virus that’s all on hold, dad is still going downhill tho, he will not use his walking aids and is obsessed with putting them away, I have to watch constantly he will even try to climb up the stairs even though there is a stairlift, I’ve tried reasoning, asking, prompting and I have to admit even yelling as the thought of finding him in a heap on the floor terrifies me but to no avail, has anyone got any tips for this, if he’d just be a bit more sensible I could relax a little. I’ve had to call an ambulance 3 times in the last 2 months to help me get him off the floor, thankfully he’s not hurt himself but I do worry it’s only a matter of time, I don’t think Mum fully comprehends what is going on she will just yell no when he tries to get out of his chair but that’s regardless of if he’s using his walker or not and I can’t be at his side 24 hours a day.
I do have carers coming in to help Dad wash and dress in the morning, I get Mum up but the rest of the time its just me.
I know Dad needs a nursing home but the only one I found reasonably locally that covers all his needs is currently not admitting anyone - I fully understand this. My plan is currently to get dad into a home when it’s safe to do so and to move Mum in with me at my house as their house will have to be sold to cover Dad’s costs.
Wow, didn’t realise I’d been prattling on so much , so anyone got any tips for getting someone to use a walking aid and how to keep sane?
Sometimes it’s good to prattle, or rant, or whatever you want.
I’m not sure there is a way to make anyone do what they ought to be doing, I’ve not yet discovered one that works for my wife. She just wants to do things her way.
Staying sane for me involves getting out of the house and away elsewhere for at least a couple of hours each day. I’m fortunate to live just outside the New Forest and I drive up there most afternoons, including through lockdown.
“Me time” seems to help for most people, but it can take any form you want, I photograph Dragonflies and Butterflies in the right weather. In the wrong weather I have to content myself with Beetles and Spiders and anything else that stays still for long enough.
You’re doing the right thing calling an ambulance to get him off the floor, don’t attempt to lift him yourself, ever. Does he have a Fall Alarm? Would he wear it? Social services will usually supply them foc.
they offered a movement alarm but Mum yelling no is a viable alternative.
He falls because his legs are so weak now, if he’d use the aids it would be loads better but he’s stubborn as heck, always has been, he’s a retired teacher so he always knows best, even told the ambulance crew last time that they were helping him up wrong.
You are so right me time is important, I manage to go for a walk while the carer is here in the morning which is a live saver
Old people often don’t want to use aids, one of my carees didn’t want to be one of them type of people, using walking sticks or a rollator.
A rollator is really good, you have a seat on it, if you are tired or dizzy can sit down for a minute or 2.
It is not giving in, its accepting that you need the help, your body is not working as well as it used to, you are not a fit young man anymore.
your brain is telling you, you can manage but your body just can’t, like you say they just won’t listen to reason.
My caree loves her rollator just gives a bit more freedom, less pain and can move a bit, have a rest, move a bit, have a rest.
It’s a difficult situation, and I’ll need to ask a few questions, there is a real need for the answers to give you best advice. Sadly, I had many battles over all four parents care.
Firstly, are they both claiming Attendance Allowance? Are you aware that Parkinsons and Lewy Body dementia are linked? It’s not that dad won’t listen and do what he’s told, it’s all to do with the development of dementia.
You say your parents are “self funding”. That should mean they have over £46,000 in savings. Do you have Power of Attorney?
You say that the house will have to be sold to pay for dad’s care. WRONG!
Whilst mum is still living in the house (so don’t move her to your place) the value of the house will not be taken into consideration.
Dad is now in serious decline. Whilst the home you like isn’t taking in anyone, make sure he is on the waiting list. Is it an EMI home? (Elderly Mentally Infirm). Make sure it can care for him whatever problems he develops for the rest of his life.
How old are you?
Are you claiming any income related benefits?
Claiming Carers Allowance?
Sorry, I know it’s a lot of questions, once we have your answers, I’ll explain more.
mum gets PIP that was sorted ages ago, I got attendance allowance for dad this week, asked him to claim a while ago but he refused, looking back what I thought was him being his usual stubborn self was the start of the dementia. I also have POA for both of them - I must thank their wonderful neighbours for that who nagged dad to sort it last year.
I’m aware dementia is common in late stage Parkinson’s’ however his last clinic appointment was last November, they feel his Parkinson’s symptoms are minor rather there’s a number of conditions all together that are causing his rapid decline. No new date has been set yet by them for further assessment because of the virus, ditto a visit to the memory team to assess what type of dementia it is. I forgot to mention before he’s due to have surgery in 2 weeks time to remove a low grade cancer from his cheek, our wonderful GP managed to get us seen this week as the follow up appointment from a visit in early march was cancelled.
The house is a big issue, Mum is incapable of living alone, she can just about make herself a brew but can’t move it anywhere, she has one leg splinted and uses a tripod stick to move about the house anything outside is in a wheelchair, her right arm is none functioning so meals etc would require assistance, as does getting up washed and dressed etc and neither I nor my husband want to move here permanently, it is in their joint names so at least there’s that, neither has written a will and now because of their cognitive issues neither can. A few years ago me and my husband did offer to sell our house and them sell theirs to get something that would suit us all but initially Dad refused, we tried again in 2018-19 but got no offers on ours then when dad’s health deteriorated we decided it would be better for them to stay put as long as possible.
I get carer’s allowance for Mum, I’m not entitled to anything else as I had my own business before all this happened which I ‘voluntarily’ shut down and my husband is working still. I’m 53 and did plan to retire at 55 although I can’t say this is what I planned for.
The home I’ve found specialises in Parkinson’s, neurological conditions and dementia.