Dad with CBD living alone with stairs , when to move him ?

[MidsDofCBD]

So my dad recently got diagnosed with CBD , he already can't write shakey right hand , a bit slow and wobbly on legs , short term memory and confusion no sense of urgency and lack of empathy and speech word finding and stuttering problems . He lives alone in a 3 story house , the consultant said he'll need to be living on 1 level soon , ie this year . We r going to struggle to get him to be happy with this , but we r also trying to figure out will what his options ? Live alone and get care when needed ? Or will that only work for a short time ? Supported living apartments ? How do we get clear guidance on this ? As a lot of what I read on here , everyone can progress differently?

Are any of you on here living alone ?

I just don't want to put home through all the upset of moving and buying a new bungalow if he won't be safe there for long .

Any advice would be appreciated?

[easterncedar]

Hi. Sorry about your father. It's a sad situation. I have no experience with CBD, but I believe it tends to cause faster degeneration, mental and physical, than does psp in general. I can't imagine he would be safe living alone for long, even on one floor, and would suggest looking at a facility that provides a transition from assisted living to full nursing care on the same site, if you have such in the UK. And soon. I think you would find the effort and trauma of moving first to a bungalow and then on to a different situation would be worse than making one big leap to assisted living, however painful that will be. This assumes that 24-hour nursing care at home is not an option; without family on the spot that's a whole other set of problems, anyway.

I do hope you find a good safe solution. It's a terrible responsibility, taking care of an ailing parent. Please keep in touch. Best, Easterncedar

[MidsDofCBD in reply to easterncedar]

Thank you for you reply , Easterncedar . That what I was thinking myself .

I have a young family and my own business already just with his Dr appointments and shopping I m stretched/stressed so need to start planning more care for him . We do have some places that have supported apartment and nursing wings attached , I ll look into them more .

[DenB in reply to MidsDofCBD]

I agree with what hellebore has told you. My husband has CBD and the progression can be pretty quick......you think your managing well, then everything changes,until gradually, gradually, they become totally reliant ..best make decisions for your dad soon,to make sure he can be safe and well looked after as these changes come about.

DenB x

[hellebore]

Hello. What you have described sounds like my husband about 12 to8 months ago. He is now doubly incontinent and more or less bed bound. CBD does have variants that have differences in progression so no one is exactly the same. However, the cognitive decline is fairly universal so someone living alone is at risk. CBD means not turning off cookers, shutting fridges, hanging up phone and not being able to get off floor. My best advice is start planning for either nursing g home (with CHC) or adapted, cared for living. He will decline rapidly and if you are too stressed or tired to make the right decision in a crisis they may be the wrong ones. If you are looking after a family as well you have to think of them. When it's your father it's hard to reverse roles and you take control but that is what you have to do. If he responded estate badly don't forget his empathy has gone. It is not his normal reactions if he was well.

It will be tough believe me things happen quickly so get a support team around you and take any help offered. Strength to you and your family on this journey.

[MidsDofCBD in reply to hellebore]

Hi Hellebore thank you for replying , so openly .

[Amilazy]

Midsdorf

Welcome to the site, a few points I am assuming your dad is over 65. He should apply for attendance allowance. If you provide care for your dad shopping/cleaning/ on call you will be entitled to Carers Allowance 35 hrs a week includes being on call not just hands on, also use worst case, if you want assistance contact CAB or local Council for help with the form. If you can while he is able to make his wishes own get Power of Attorney finance and health these allow you to control his finances and health care as the disease progresses. Has he been seen by OT to assess his environment and provide aides. Contact his GP to arrange District Nurse visits to assess health requirements this is the first step for applying for CHC which will be essential for future care. While he is able get him to look at a few nursing homes (must be nursing not just residential care) so he can chose one he likes, list available from local council social services.

A lot to do which will unfortunately fall on you, good luck but remember to look after yourself and family.

Best wishes Tim

[MidsDofCBD in reply to Amilazy]

Thank fully we did power of attorney forms a while ago. Will look into attendance allowance , I have the local councils brochure on nursing homes , maybe after the OT visit he'll realise he needs to move . Thanks Tim

[vlh4444]

YesI would definitely start researching nursing homes. He is unlikely to be able to live unsupported at home for very long, even if in an adapted bungalow. If there is nobody who could live with him, it would probably mean full time professional care at home eventually. Therefore probably best to look into nursing homes now. Most good ones will have a waiting list, so you might as well be on it. If a place comes up, you don't have to take it if he is not ready at that time.

You are right that people progress differently, but there are a range of symptoms which are common to most sufferers, many of which unfortunately lead fairly quickly to loss of independence. My husband suffers from PSP and there are others who will give you better advice about CBD specifically, but I do think you should get as much in place as possible at an early stage for your own peace of mind.

Vicki x

[Bob40]

Hi, my mum had CBD progression is different for everyone. The only way I can describe out experience is like a rollercoaster. Slow decline/ plateau then sudden (sometimes days) then plateau etc. My mum ended up in hospital 3 times from falling backwards ( thankfully my dad was in the house). That was whilst she could still move around with a zimmer. Find a nursing home you are happy with as even with my Dad's support mum was in a nursing for a year before she passed away he was unable to cope. Such were her needs that a nurse was needed 24/7 and it took 2 carers to move/support her. You are in my thoughts. It's so so tough x

[MidsDofCBD]

Thank you both , I just left my dad after another conversation going round in circles . Sooo frustrating , he doesn't want to discuss his future , won't understand even when I carefully explain now is the time to make choices and plans because he won't be able to in the future . I think sadly it will take an accident for something to happen.

[DenB in reply to MidsDofCBD]

When my husband was first diagnosed, 3 years ago, although he had symptoms since 2010, he did 't want anyone to know that he was ill, he didn't want to talk about it and hated it if I spoke openly about it to the doctors and when they asked how he was,he would always say that he was fine but I always had to contradict him and say how he really was.It wasn't easy,he would accuse me of being disloyal and telling lies about him.

I can't remember when it got easier talking to the doctors, probably when he couldn't find the words and I had to take over all the talking, which I have been doing for a long time now.

I am telling you this, MidsDofCBD, because your dad will probably be in denial for quite a while and even think you are taking over his life and trying to make all the decisions for him, which you will have to do because he won't be able to.

I wish you and your family well

DenB x

[MidsDofCBD in reply to DenB]

Thanks Denb it does help reading similarities, already just like you said at the Dr it's like I m dropping him in it , telling on him etc , which makes it harder and causes argument.