Coping with dementia

[suzie]

None of us plan for a future when a family member has dementia. When Dad, who has worked hard on the farm all his life, becomes vacant and forgetful, or Mum's personality changes from a loving, helpful person into an irritable angry lady how do we, as a family, learn to manage the situation? Have any of you got any coping strategies which may be helpful to others?

 

[DartmoorEwe]

Its tough to have two parents with dementia. You are asking about coping strategies so I'm assuming that they have each been to the GP and got a diagnosis. Not all forgetfulnesses and irritables are dementia - they could be because of a bladder infection.

As for coping strategies I'm a great advocate for talking - to each other and to a third party. There are support groups if friends are not that sort. Can you speak to the parents about how they feel? If they are aware that something is wrong then they might be uncertain how to manage.

Charities are around to provide assistance: Age UK's web site gives some practical pointers (https://www.ageuk.org.uk/information-advice/care/helping-a-loved-one/caring-dementia/). I thought the best advice came right at the end - make sure their hearing aids and glasses are working and clean and go from there.

 

[suzie]

Thank you for your helpful and positive advice

 

[Cowabunga]

I do hope they have put their finances in order so that you do not have to pay for their care and get into financial distress. Mine did at the behest of my mother, which was just as well because my father did become quite ill and incontinent and had dementia in the last two years of his life. It may be that they will agree to give you control of their finances and for you to have power of attorney. If they are reasonable and not too far gone and there are no other family complications, they may agree to this. My mother has given my wife control of her finances, she's 93, but that doesn't stop her doing her own grocery shopping by phone etc and she has control of her faculties, although she can no longer cope with finances and bill paying and official correspondence and so on.

At some point it is inevitable that you will not be able to cope with them if they have dementia and it is best to realise that and make sure everyone is aware [not them, but any near relatives] that it is likely to be the case from the outset, and that they will deteriorate at an as yet unknown rate, which just might become rapid.
Do not ruin your own life trying to cope with something that requires specialist 24 hour supervision and care that you cannot cope with. The workload and stress could get unbearable.
Make absolutely sure that you get a professional diagnosis, or at least that it isn't something else. If the onset is sudden, then as above, it could be a bladder infection, but that will be exceptionally sudden and deterioration in health will be very sudden indeed. There may be other issues.

 

[deleted user 837354]

You just need to be aware that there might well come a time with dementia when full time care in a dedicated establishment is your only option. 24 hour care in your own home is murderously expensive and dementia can progress to the stage that they are in danger of getting themselves into all kinds of situations.

 

[flowerpot]

We looked after MIL for several years, luckily she remained good tempered and the whole family agreed that she was staying at home and we also agreed to work out the necessary care between ourselves. There were five of us altogether (3 here and 2 daughters coming regularly) and we all said, on separate occasions, that had we been the only person it would have been impossible to cope both physically and mentally. Age UK will help you to apply for Care Allowances.There is a book called Contented Dementia, that you can get from the library. Basically, it said just agree with everything that the person says, if you start arguing it will be upsetting for them. We found Age UK helpful, the GP much less so, although someone from Occupational Therapy came round and provided some mobility aids like handles in the doorways.

Be aware of the legal situation. You cannot be a "retired farmer" living in a farm house and get the Agricultural reliefs - you need to have a talk with a solicitor so you are fully aware of the legal problems that might be thrown up.
Power of Attorney now if you haven't already. We were sometimes asked if there was one, but we never had to enact it, but just having it is vital I think (having seen the problems caused when someone had a sudden stroke and had previously had an active part in the business - difficult and expensive for the family).

 

[deleted user 837354]

We looked after MIL for several years, luckily she remained good tempered and the whole family agreed that she was staying at home and we also agreed to work out the necessary care between ourselves. There were five of us altogether (3 here and 2 daughters coming regularly) and we all said, on separate occasions, that had we been the only person it would have been impossible to cope both physically and mentally. Age UK will help you to apply for Care Allowances.There is a book called Contented Dementia, that you can get from the library. Basically, it said just agree with everything that the person says, if you start arguing it will be upsetting for them. We found Age UK helpful, the GP much less so, although someone from Occupational Therapy came round and provided some mobility aids like handles in the doorways.

Be aware of the legal situation. You cannot be a "retired farmer" living in a farm house and get the Agricultural reliefs - you need to have a talk with a solicitor so you are fully aware of the legal problems that might be thrown up.
Power of Attorney now if you haven't already. We were sometimes asked if there was one, but we never had to enact it, but just having it is vital I think (having seen the problems caused when someone had a sudden stroke and had previously had an active part in the business - difficult and expensive for the family).

You bring up a very pertinent point about obtaining power of attorney for health AND financial matters whilst your loved one still has the ability to sign their consent. You can get into a lot of wranglings (particularly with other relatives if there is money involved) if this is not obtained ahead of time. In particular I have known circumstances where you get a relative who is diagnosed with dementia but who refuses to sell any assets or pay any money for their care and the local authority ends up having to battle them whilst they sit in a hospital bed (blocking it in effect) whilst social care providers are unable to do anything for them. Add in a relative possibly trying to obtain inheritance/money for themselves and suddenly it gets messy fast.

I would not try to argue the point with anyone with dementia, correct them or disagree with them and certainly would not 'set them straight' as it has the potential to them a terrible lot of anguish and distress. I've met elderly people asking things like if their mother is coming to visit them today despite the fact their mother passed away several decades ago. It's really sad.

 

[Cowabunga]

We looked after MIL for several years, luckily she remained good tempered and the whole family agreed that she was staying at home and we also agreed to work out the necessary care between ourselves. There were five of us altogether (3 here and 2 daughters coming regularly) and we all said, on separate occasions, that had we been the only person it would have been impossible to cope both physically and mentally. Age UK will help you to apply for Care Allowances.There is a book called Contented Dementia, that you can get from the library. Basically, it said just agree with everything that the person says, if you start arguing it will be upsetting for them. We found Age UK helpful, the GP much less so, although someone from Occupational Therapy came round and provided some mobility aids like handles in the doorways.

Be aware of the legal situation. You cannot be a "retired farmer" living in a farm house and get the Agricultural reliefs - you need to have a talk with a solicitor so you are fully aware of the legal problems that might be thrown up.
Power of Attorney now if you haven't already. We were sometimes asked if there was one, but we never had to enact it, but just having it is vital I think (having seen the problems caused when someone had a sudden stroke and had previously had an active part in the business - difficult and expensive for the family).

By coincidence a friend has left this very minute and his elderly sister has had a stroke and will probably need 24 hour care long term. The problem being that she has a third of the farm and nobody has power of attorney and she is not fit to appoint one. What with not even being able to visit her at the moment due to restrictions and the fact she is insisting that she wants to come home, it is very very stressful for everyone, and she isn't home yet and, realistically, is unlikely to be going home for a long time, if ever.

 

[deleted user 837354]

It is worth noting that I understand the average time in a nursing home for people who require long-term 24 hour nursing care is approximately 18 months and runs to about £2000 a week if placed with a private provider. You are thus looking at an average spend of about 150K for someone in this situation (if they have assets or savings).

That is a lot of money by anyone's measure but this may be entirely offset by their savings or home, pension and the like.

 

[Bongodog]

By coincidence a friend has left this very minute and his elderly sister has had a stroke and will probably need 24 hour care long term. The problem being that she has a third of the farm and nobody has power of attorney and she is not fit to appoint one. What with not even being able to visit her at the moment due to restrictions and the fact she is insisting that she wants to come home, it is very very stressful for everyone, and she isn't home yet and, realistically, is unlikely to be going home for a long time, if ever.

This is where no one ever wants to be, when the person is not fit to appoint a power of attorney its over to social services and the court of protection to sort things out, they literally take forever. I once did some work for a lady who had a bad fall between my doing the work and sending the invoice, the invoice went unpaid for 9 months whilst the court of protection worked at a snails pace.
We've just had to enact Mum's power of attorney as she's now in a nursing home. fortunately it was drawn up at least 15 years ago when she was still in her 70's

 

[Hfd Cattle]

FIL living with us at the moment . He has dementia but not severe. It is driving me mad ! 75% of the time it's ok but we can't work out whether he is deliberately awkward or is it the dementia . He eating is terrible, he makes more noise than an old ewe chewing a turnip when he eats with us but if we have friends around he is completely different . He behaves like the perfect gentlemen . I've built a Worksop for him and he spends most of his days in there and is quite creative but then comes in the house complaining how he has had a hard day . His wife (second one)threw him out earlier this year without him knowing it was happening . ....he went to my sister in laws for a few days and his wife sent her a letter saying Do Not Bring Him Back ! She couldn't keep him so he came here . They had hundreds of thousands in shared bank accounts but when ny sister in law tried to recover his half we found out he had written to her and told her she could have all the money as he now has no need of it !
Why am I saying this ......get the finances sorted because they will need it for care . We are now paying £350 a week for carers to come in for hr and a half each day . Meanwhile we fight to recover hís money .......guess who is earning out of this !!!!!

 

[flowerpot]

Everybody should have a Power of Attorney (when you have assets I suppose!). Went to one of those farmer meetings and all the solicitors who were there put up their hands when the question was asked, including all the young ones. Anyone can have an accident or illness at any time and it is like writing a will, once you have done it you don't have to think about it afterwards, so long as you tell everyone involved that it is in place and you know where to find the paperwork!

 

[dudders]

None of us plan for a future when a family member has dementia. When Dad, who has worked hard on the farm all his life, becomes vacant and forgetful, or Mum's personality changes from a loving, helpful person into an irritable angry lady how do we, as a family, learn to manage the situation? Have any of you got any coping strategies which may be helpful to others?

As others have said, smile and agree. Discreetly take over those aspects of their lives that are upsetting them, or they're not managing well. When my mother came to live back here after my father died, she did all the cooking for us both. Gradually, she had more and more difficulty with it and I started doing bits and ended up doing it for the two of us. But neither of us really noticed - it was just a sort of natural shift over time. Gradually the old back out and the young take over.

Very important with dementia to stay calm, loving and supportive at all times - which can be the biggest test with some of the flak that comes your way. If you understand what's going on, that makes it easier to cope. I lost my cool a couple of times through my own lack of understanding, and have always regretted it - too late now.

Don't be afraid to call for support if you're struggling, as mentioned by @DartmoorEwe. Ask questions, talk about how you're feeling, don't bottle it up. Someone to take over while you get away for a day can make a big difference - and can also be good for them. If they've got old friends, get them to come for a meal or ask them to take the old folk out somewhere.

I reckon boredom accelerates dementia, especially with someone who's always been busy. Sitting watching TV all day is really bad news, also brings on the bladder infections others have mentioned. Try to keep them doing stuff and moving about. The longer they can contribute in some way to the running of the farm the better. Feeling that they're worthwhile is a lifesaver - knowing that they're worthless is, well, I can't find the word for how awful it must be. Just collecting eggs, growing some veg, pottering in the workshop, walking the dog, feeding the cat, it's all to the good, even if they do it all wrong!

In the end, it may be that a nursing home is the only way forward. When they reach the stage where they need constant supervision and help with absolutely everything, then it comes down to what you can afford. To have full care at home is the best thing, but you need the money and room for two carers, even for just one parent. Compare that with your local nursing home, and see what the council or NHS will contribute. You will have to fight to get anything, so be prepared to do battle! Check out several homes and ask questions - a lot of them. Check to see what the food is like, what activities are provided, what stuff of their own they can have, do they have a cat/hens/garden. You need to be sure the top priority is their residents' comfort and happiness, not their own convenience. The place I checked my mother into was pretty good, but the bedlinen was godawful - sheets and pillowcases were nylon, because it's easy to launder. I insisted she had good cotton bedlinen, provided it myself and made sure it was used. But you have to be nice to the staff at the home, as they have a pretty traumatic job and very little reward. That's why most of them are foreign - we Brits can't generally hack it. Being cheerful and appreciative helps them get through the day and may just improve the way they treat your parent. Occasional chocs and wine...

If they end up in a home, you absolutely must visit, and often. Do not just abandon them. To hell with the work to be done, make sure you go there and spend time with them or take them out. I did a 40-mile round trip every other day to see my mother and would have been there every day if she could have been just up the road. Things got neglected on the farm, but nothing that mattered in the long run.

The way you treat your parents at the end of their lives will be on your conscience for the rest of yours, so make it good. And if you have children of your own, you'll set them an example that you can hope they'll follow!

Sorry for rambling on...

 

[Northdowns Martin]

One of the major things my father won’t let go is his ability to drive. His license has been taken but he insists he can still drive and will do it illegally. Fortunately I have his car and keys. We’ve brought him a gator for around the farm however his general awareness is diminishing. My mum has started a course of kemo which has confused dad as he wants to help and drive her to hospital, manage to swerve that by telling him he can’t go in with her once there. It’s extremely sad to watch my father who has achieved so much in his life struggling with the basics of living. I like to think it’s because he has literally worn his brain out.

 

[Boysground]

Loosing his licence was the tipping point for my dad. It took us a while to get him off the road and he certainly needed to be. I don’t think he ever forgave us for doing it. That was April 2019 now we are in a situation where he is a shadow of a man. I haven’t had more than a grunt from him since before Christmas, we have carers come in and his day care is now back open. He will talk to the carers a little. It’s really tough on my mum but she does not want him in a home. TBH it’s not long before she has no choice.

At least we had POA sorted and I can control the money.

Bg

 

[dudders]

Put yourself in the position of these guys. After all, it'll be you one day. How are you going to take it when you feel of no use to anybody, just in the bloody way? It's pretty grim, I'm anticipating. For me, I have to be doing something, anything, so long as it's productive. If someone gradually took over from me, I wouldn't mind too much, so long as I could keep doing something to feel I had some value. Get me to sweep the yard, prune the roses, look after some hens, feed stock, check the fences. I'd die a slow death if I was told to sit and watch TV.
Even if your parent doesn't do stuff right and you have to do it again, that's not what's important. If it can keep him mobile and his mind working and feel he's contributing, that's what it's about. Good luck with it anyway.

 

[Cowabunga]

Put yourself in the position of these guys. After all, it'll be you one day. How are you going to take it when you feel of no use to anybody, just in the bloody way? It's pretty grim, I'm anticipating. For me, I have to be doing something, anything, so long as it's productive. If someone gradually took over from me, I wouldn't mind too much, so long as I could keep doing something to feel I had some value. Get me to sweep the yard, prune the roses, look after some hens, feed stock, check the fences. I'd die a slow death if I was told to sit and watch TV.
Even if your parent doesn't do stuff right and you have to do it again, that's not what's important. If it can keep him mobile and his mind working and feel he's contributing, that's what it's about. Good luck with it anyway.

You must appreciate that these people are actually losing their minds. Some slowly. Some rather quickly. That brings problems to them early on, when they can still reason and know something is wrong. Later their whole being changes and who they once were no longer exists, with little or no memory and total loss of character and previous behaviour. There comes a point where they can’t even remember the layout of a room that they always lived in and were in a few minutes previously, to the extent that hanging a curtain over the door makes it impossible for them to find it.

This is serious and very upsetting stuff. Tragic for all concerned when a person you know and love becomes a living dead and possibly even incontinent, needing to be put in nappies and cleaned. A true regression to a second childhood. The brain is eaten away until one becomes, effectively, a zombie.

 

[deleted user 837354]

It is hard. I've seen people get aggressive or be totally fine one hour and a completely different the next. Some people utterly refuse help or assistance of any kind. It is hard on families and loved ones. It can be hard on carers as well because families don't like that they are seeing and turn on the carers as well, the bulk of whom are paid near minimum wage.

The stopping them driving thing is awful I agree but there is no way I would be able to sleep knowing an elderly relative was out there on the road, it's an accident just waiting to happen.

 

[flowerpot]

You must appreciate that these people are actually losing their minds. Some slowly. Some rather quickly. That brings problems to them early on, when they can still reason and know something is wrong. Later their whole being changes and who they once were no longer exists, with little or no memory and total loss of character and previous behaviour. There comes a point where they can’t even remember the layout of a room that they always lived in and were in a few minutes previously, to the extent that hanging a curtain over the door makes it impossible for them to find it.

This is serious and very upsetting stuff. Tragic for all concerned when a person you know and love becomes a living dead and possibly even incontinent, needing to be put in nappies and cleaned. A true regression to a second childhood. The brain is eaten away until one becomes, effectively, a zombie.

That sadly, is all too true. When I think of MIL, who never became aggressive fortunately. She was the sort of person who was never still, always had to be doing something and did all the jobs on the farm and was still out driving tractors and feeding the cattle until she was nearly 90. OH realised that something was wrong when she couldn't find her way home when she had been out in the pick-up. It was a general decline, but so sad for the person who had been the boss, get us up and going in the morning, making everything happen. It was a gradual decline into what was back to being a baby The with all that entails. Last brain function to go is controlling the body being alive, but everything else goes eventually and what is left is a shell. Another horrid thing is wondering if you are going to end up like that too. When nursing you don't know whether it is going to be 6 weeks, 6 months or 6 years.