Caring for parent with dementia

[Niklz]

Hi my father has been diagnosed with Alzheimer's and vascular dementia, he has been in a residential home for the past 12 months but will soon be returning home to live out his final years in his own home with myself as his full time carer, I have had his house modified for him to live predominantly downstairs, has anybody else cared for a loved one like this and have any tips or advice? Many thanks


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[Cat27]

Welcome to TP

Get carers in to ensure you get a break & don't have to do everything.

 

[Red66]

Sorry I haven't experience of this, my Dad had Alzheimers, vascular dementia and lewy body dementia, I know how hard it can be. Dad lived his last 9 months in a specialist dementia nursing home. It was so hard visiting him for 2-3 hours each day, my hat is off to you to be your Father's dedicated carer. I hope you have been fully informed what is to come in terms of deterioration and next steps. My hat is certainly off to you, your Dad will appreciate this, I have no doubt. You must get carers in too, you cannot deal with it 24/7, you will send yourself into an early grave. Any questions let me know, my Dad sadly passed in August this year and he was sectioned November 2015, we have had his anniversary of being sectioned and by that time he had been already dead for 3 months. Doesn't make any sense and now it's Christmas. Hard time for all here on Talking Point that's for sure. Stay strong Red xx

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[oilovlam]

I went on a course - "caring with confidence" I think it was - it went through a lot of important things, finances, stress management, etc etc. There are lots of people in the same boat, trying to keep the family close. It can be very difficult.

I suppose people have already said that you need to look after yourself. It is so easy to concentrate on your father and neglect yourself. But you will have to give up a lot.

Try to get out as much as possible with your dad if he is able. Memory cafes, day care centres for him, perhaps even the odd meal in a pub, a walk around the block. Anything to get you out, feeling 'normal'.

Try to make things as easy as you can. Don't feel you have to cook 3 course meals. I buy ready meals from a local butcher, wiltshire farm food/oakhouse are also good.

Sort out a dentist early on. If he cannot go to a dentist then there should be an 'emergency' dentistry scheme who can visit....sign up to that as soon as you can (it can takes months to get on the books, but once you are signed up they can visit within 24 to 48 hours if there is an emergency).

Get a podiatrist to keep toenails under control. I used to do my dads but always drew blood (even the podiatrist did once, to her mortification....he had funny 'quicks').

I never saw dad to 'the end'....he died suddenly of a undiagnosed blood clot. But he was getting a lot more stressful for me & time consuming as he declined near the end and his frailty impacted on his dementia. You may reach a point where you cannot cope (physically, mentally) and you will decide to seek alternatives....if you reach that point it wont be defeat, a person can only do so much.

But enjoy the good times....have a laugh with your dad. Long may it continue.

 

[Niklz]

Thanks to you all for your advice, I had been trying to juggle a full time job and be his carer for 4 years before he moved to a residential home, I just couldn't cope with the demand, however I'm now in a position to be there full time, we are looking at daycare plus I have family and friends there to give me a break so I won't crack up, my dad isn't that far advanced yet so it shouldn't be that difficult at first. Anyway we will see how we get on, and thanks again for your input

Kind Regards

Adam



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[Cat27]

Keep posting here too Adam as you'll get lots of support.

 

[Safiya]

Adam

I am all admiration, and I can only suggest you plan as far as possible ahead and take advantage of any and all help available. Have a list ready for those hapless bodies who say, 'Well just let me know if I can...YES, YES YOU CAN HELP!" Do your research NOW about every bit of community support, funding, assistance and volunteer help that might be available.

Pace yourself - it's a long distance marathon, not a sprint.

Look after yourself. You can't care for him if you are burnt out.

Sometimes, good enough is good enough.

Adam, I hope this time with your Dad is special. Take care of yourself.

Saffie

 

[Spamar]

One thing struck me, 'predominantly downstairs ' I feel it's needs to be all downstairs, or have a stairlift fitted. Many elderly people have trouble with stairs. Add dementia into the mix.....very difficult.

 

[oilovlam]

May sound silly but there will come a point when you realise that wet wipes are 'probably' the greatest invention in the universe.

Even if you don't use them for their intended purpose they are great for cleaning up 'things' on carpet.

Good luck.

 

[Niklz]

Yes he can't have a stair lift as he's also suffers epilepsy, he has a walk in shower upstairs, age uk have been out to put an extra banister in and numerous grab rails around the house. He has everything. He needs downstairs, a commode, perching stools, walking aides etc, there are signs up giving directions to the toilet for example, the house is dementia friendly so it's just a case of me being there I guess! I think I'm ready for the challenge!


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[Yellowduck]

First post....Mother has Dementia

Sorry wrong post....

 

[Rodelinda]

Hi Adam, all the best for this. My mother lived with me for 5 years until her recent death from vascular dementia. What would I say from experience?
Get help in from the start - not only to give you a break but also to give you some outside perspective on your father and how his illness is developing.

Make friends with his GP early on so that they are clear that you know what's what and can work with them on health problems. Go with your father to every appointment - ask to have your name put on his hospital record as his carer (I didn't have LPA for health and welfare but this wasn't a problem for our hospital - they were grateful for my help with communication etc).

Explore any statutory services locally - we had a superb Disability Intensive Support Team in the local NHS mental health trust and they were excellent at being a rout into other services and help - including pointing us towards a small local care collective and our care worker was brilliant and supportive as well as very reasonable charges.

Recognise that things can change quickly - after a couple of years my mother was no longer able to go upstairs and we had to put in a shower room for her downstairs.

Try to involve your father in as much ordinary activity as you can - but don't force; my mother peeled vegetables, layed the table and made her own sandwiches until the last few months (OK I had to put everthing out for her and carry her tray but that was OK).

My mother declined gradually and in retrospect I'm not sure we recognised how much her dementia had taken over so try to keep some detachment. We were just beginning to recognise that our care was 24/7 as we were alert to movement all through the night and day and we couldn't leave my mother in the house and it took a big toll on us. I suspect that goes with the territory.

Learn how to do some practical stuff - everyone tells you not to lift people but learn how to do it so if your Dad falls, you can get him up carefully and safely.

I bought a very comfortable wheelchair (2nd hand) quite early on. It could go in my car and it was invaluable as it meant we could go out - for walks along the seafront, to the local bluebell woods etc. And get a blue badge - it made parking so straightforward.

Be prepared for lots of washing!

Don't try to be a super-hero, you will burn out. Try to have fun with your father but also make space to see your own friends. Try not to sweat the small stuff - just worry about the really important things (and do you know what, most stuff is small). All the best. Sue

 

[skeletor]

Hi my father has been diagnosed with Alzheimer's and vascular dementia, he has been in a residential home for the past 12 months but will soon be returning home to live out his final years in his own home with myself as his full time carer, I have had his house modified for him to live predominantly downstairs, has anybody else cared for a loved one like this and have any tips or advice? Many thanks


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Hi I have had alzichmer's for nearly 5yrs now, still holding up keep the one cell going.
It is better to get help even just a few hrs a week, the earlier you do it the better. I have my wife who is my carer, but once or twice a week she gets a support worker to give her a break. I got used to him about 3yrs ago now but I don't know how I would have reacted to a strange bloke being here later in my dementia. So the sooner the better. It will give you a break, you will need it, after all its 24-7 all yr.
Good luck to you hope you and your dad stay together safe and happy for as long as possible

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[Niklz]

Thank you sue X

 

[Peirre]

I can only reiterate what has been said earlier ....plan ahead, know the answer before you reach the point you need to ask the question. The last thing you want is to find yourself at a crisis point and not have a possible solution at hand.
I gave up work to care (12-13hrs a day) for my father in his own home, but I live 5-10mins away, my brother lives with my father but has a job so the task has fallen to me. I deal with all the day to day running of his home, catering, his care, incontinence, bathing/showering, dressing him, putting him to bed and getting him up etc. But we don't have any external careers come in, I do it all myself with the occasional moments of help from my siblings.
I did a couple of training courses in preparation for this run by the AS which gave me pointers on how to deal with his care, financial, and where to find help.

 

[oilovlam]

Adam, if your father does fall - and most likely he will at some point - only try to move him a little bit at a time....sit up or move the legs slightly....if there is any pain then call an ambulance....most likely something will be broken. It is awful when it happens, it is so easy to drag them upright, but better to call in the experts. Call the ambulance...keep them warm and expect a long wait. Took over an hour before it arrived for my dad...over 2 hours for my mum.

Obviously if they can move without pain then sit them up....and help them into a chair. Take it slowly and if in doubt call 111 or an ambulance (111 are a pain and usually call an ambulance anyway...so they just delay things really...my limited experience)

 

[Niklz]

He can be quite unsteady as he suffered a severe fracture in his back during a seizure in 2013. Fortunately he was a Paramedic for 24 years so taught me some first aid over the years, falling is a big concern of mine so I've got grab rails up around the house to help minimise the risk


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[esmeralda]

Have you had a visit from the Community Physio and OT Adam? They can often suggest things to help that you mightn't have thought of on your own.

Hope it all goes well for you and your dad, glad you have found this place, so many people find it a real help.

 

[Frecks]

Hi Adam

I am in the process of moving in with my dad. I am giving up my flat and officially moving in with dad on 12th February. Me and family have spoke about respite for myself which I know is a must! My siblings are on board and we are all attending support groups monthly and researching the disease.

My brother and I already had LPA sorted a few years back as we saw a decline in his abilities and wanted it sorted before he got any worse (dad was diagnosed a month ago with Alzheimers) I have received attendance allowance form which I am going to tackle filling in this weekend. Once I am moved in I will be able to get things moving in terms of getting ALL bodies involved and aware of my dads diagnosis.

My dad is very excited at me moving in and we are in the process of updating a few things in his house so to make him as comfortable and happy as possible.

We have spoke about having a walk in shower fitted so we will get quotes for this in the next few weeks, dad is 74 and mobile but he cannot cook anymore so he has nutritious ready meals my brother sorts for him twice weekly and we also cook meals for him already portioned up so all he has to do is warm in the micro. He can wash up but that's it so I have been doing his cleaning for years now as he wouldn't have a clue. His self care has a lot to be desired so we tell him to change wash etc or he just wouldn't do it apart from bath once a week....he does this religiously every Saturday night ha!

We want daddy to have a very comfortable life for however long he has and want to bring some life back into his home. He loves music so music will be on a lot once I live there and having friends over for meals and to play cards/dominoes (his love for many years now) my kids who are grown up and live down south will come to stay several times a year too plus other grand kids....we aim to make his house become alive again to try to keep him upbeat and his brain as active as poss.

I will continue to work four days a week for the NHS and will only give up work when he can no longer be left alone safely. We know it would break my dads heart to leave his home where he has lived since 1960s when he moved here from the Caribbean...his home is his everything and we intend to keep it like that for as long as possible...its my duty now to do this and our duty as a family to help our dad now he can no longer do it himself.

Do what your heart is telling you for your father....you know him better than any professional or outsider and remember it is vital you have your time....I sure will be making sure I do! I already have 2 holidays abroad booked for this year and would like at least 2 holidays a year thereafter, my health and sanity matter too

 

[Spamar]

Grab rails doesn't stop falls, only the use of them do. Plus if he uses a stick, that's another complicating factor. Add in that if you say, would you straighten your legs? They haven't the foggiest idea what you are talking about, let alone do it!
Add in that they will fall in the most awkward place possible, the Loo (ask any paramedic!), in OHs case, just outside the loo at the end of a corridor, or just inside of the porch door. I couldn't get him up, it turned out that was my tipping point!
The only thing I can say is expect the unexpected!