Terrified Wife

[Nannie Sandra]

Thank you for caring. There are no answers at the weekend or on holidays

Hi ,I am a 70 year old (in good health fortunately!) caring for my 76 year old husband (Mixed Dementia and many physical health problems too )at home
He was diagnosed 7 years ago and at mid stage now .
The BEST step I took about 4 years ago was to open a joint bank account,and close the SEVEN‘secret’ accounts Hubby had!He was reluctant to do ANY of this ,as for the 30 years I have been with him (married for 20 years) he was mean ,secretive and domineering where money issues lay .
Anyway,we sold our house to buy a coastal Park Home ,he was reluctant but agreed.
When the Dementia was diagnosed we moved back to his home town and close to my children and grandchildren (his two children are another story!) and now live in Sheltered Housing (pay £750 a month rent and service charges ) so over the past 4 years have paid £36 k ,but you know what ,it was the BEST outcome imo ,as now have some money to fall back on from house sale and tbh Hubby doesn’t FINALLY care or ask about money/savings at all!
Had we still owned our own property,it would have likely been a very different story.
I’m so very sorry for the situation you are in ,it must be terrible for you .I know my comments haven’t probably helped,but I had a pal in very similar situation to yours and when her husband went into a Nursing Home last year,she was finally able to sell up (with significant family backing and a good solicitor) and has rented an easy run flat and is able to live now rather than just survive
Sending you so much support and hope things get easier for you really soon

 

[Alisongs]

You haven't actually answered the question of what you want from us. We can't supply hands on help and assistance because we are an on line forum, but we are not on the outside looking in, we are a community of people who are/have been dealing with the problems of dementia.

Did you just want to come on to vent? If so, that is OK, we've all been there.

Might I make a suggestion, though? As you are considering walking away, why not allow yourself a weeks "holiday" away from visiting him. He will not "rot " in a week and you can sleep and plan what to do.

One thing you can do is start to sort out the hoarding. As his wife you can legally do this. I'm sure that he has said that it's his stuff and you mustn't touch it, but legally you can and he will only complain if he knows about it. So don't tell him. Start to get rid of the rubbish and broken sstuff and things may start to seem more positive.

 

[Alisongs]

You haven't actually answered the question of what you want from us. We can't supply hands on help and assistance because we are an on line forum, but we are not on the outside looking in, we are a community of people who are/have been dealing with the problems of dementia.

Did you just want to come on to vent? If so, that is OK, we've all been there.

Might I make a suggestion, though? As you are considering walking away, why not allow yourself a weeks "holiday" away from visiting him. He will not "rot " in a week and you can sleep and plan what to do.

One thing you can do is start to sort out the hoarding. As his wife you can legally do this. I'm sure that he has said that it's his stuff and you mustn't touch it, but legally you can and he will only complain if he knows about it. So don't tell him. Start to get rid of the rubbish and broken sstuff and things may start to seem more positive.

 

[Alisongs]

Sorry you're wrong. I have taken proper advice and cannot just dispose of his possessions, as this could be challenged as a criminal act! It would have to be done on the quiet and would need about four or five skips.

 

[Alisongs]

Hi ,I am a 70 year old (in good health fortunately!) caring for my 76 year old husband (Mixed Dementia and many physical health problems too )at home
He was diagnosed 7 years ago and at mid stage now .
The BEST step I took about 4 years ago was to open a joint bank account,and close the SEVEN‘secret’ accounts Hubby had!He was reluctant to do ANY of this ,as for the 30 years I have been with him (married for 20 years) he was mean ,secretive and domineering where money issues lay .
Anyway,we sold our house to buy a coastal Park Home ,he was reluctant but agreed.
When the Dementia was diagnosed we moved back to his home town and close to my children and grandchildren (his two children are another story!) and now live in Sheltered Housing (pay £750 a month rent and service charges ) so over the past 4 years have paid £36 k ,but you know what ,it was the BEST outcome imo ,as now have some money to fall back on from house sale and tbh Hubby doesn’t FINALLY care or ask about money/savings at all!
Had we still owned our own property,it would have likely been a very different story.
I’m so very sorry for the situation you are in ,it must be terrible for you .I know my comments haven’t probably helped,but I had a pal in very similar situation to yours and when her husband went into a Nursing Home last year,she was finally able to sell up (with significant family backing and a good solicitor) and has rented an easy run flat and is able to live now rather than just survive
Sending you so much support and hope things get easier for you really soon

 

[northumbrian_k]

Sorry you're wrong. I have taken proper advice and cannot just dispose of his possessions, as this could be challenged as a criminal act! It would have to be done on the quiet and would need about four or five skips.

Hi @Alisongs I'm glad to see that you are still posting. I don't know about the legal position so can't comment on the advice that you have been given. I do know that I have never been challenged or accused of a crime when clearing out some of my wife's possessions, including clothing and very many pairs of shoes.

But my guess is that dealing with the hoarding is by no means the most important of the issues that you are facing. I am not clear what it is that you want from this Forum. Reading your posts it seems as though you are looking for someone to step in and take control of the situation. That may happen by default if you indicate to social services that you can do no more. The downside of that would be losing any influence over what happens to your husband in the future. Whether that would matter or not might rest on the extent to which it bears on what you want for your own future.

I am really just thinking aloud. Your situation is beyond my experience and I am not in a position to give advice (even if you would want this) or hands-on practical support. That's one of the limitations of an online community. It doesn't mean that what we say - based on our own experience - is not well meant or can be of no help.

 

[Alisongs]

Thank you for your reply. My husband has now reached moderately severe dementia. At 67. Only diagnosed 8 months ago. He only had a few Parkinsons related speech problems when we married two years ago. His illnesses have basically been an avalanche that has swallowed me while he gets inadequate and uncoordinated medical help. I've decided he's coming home so half his money is not locked up in care costs. I can't afford the fees and the minimum one year wait to get Court of Protection deputy ship and another year to get a Court order to allow me to sell what is actually half mine (Wholly mine if he dies first). I'd be bankrupt as I can't afford to live here on my own resources. So I want him home, with a care package, and I will get on with hiring help to sort out the house, sell up and move to a retirement complex. (Or an ordinary bungalow if he insists) Husband has been more coherent this week as they upped his Parkinsons meds. He knows I've had some repairs done that have been outstanding for years, as he obviously didn't want to admit to not being able to do or organise repair. Other works are in the pipeline that he agreed to and we agreed if. anything wants doing, we'll discuss it, and I'll organise it. He abhors noise but said he'll use earplugs and I said he can sit at the bottom of the garden! He currently understands that I need help and I'm going to get it. He does actually want me to be safe and happy in a forever home, he's always expected to die first because of diabetic issues. If I went first, he'd be safer in a retirement complex until he was taken into care.

 

[Alisongs]

Hi ,I am a 70 year old (in good health fortunately!) caring for my 76 year old husband (Mixed Dementia and many physical health problems too )at home
He was diagnosed 7 years ago and at mid stage now .
The BEST step I took about 4 years ago was to open a joint bank account,and close the SEVEN‘secret’ accounts Hubby had!He was reluctant to do ANY of this ,as for the 30 years I have been with him (married for 20 years) he was mean ,secretive and domineering where money issues lay .
Anyway,we sold our house to buy a coastal Park Home ,he was reluctant but agreed.
When the Dementia was diagnosed we moved back to his home town and close to my children and grandchildren (his two children are another story!) and now live in Sheltered Housing (pay £750 a month rent and service charges ) so over the past 4 years have paid £36 k ,but you know what ,it was the BEST outcome imo ,as now have some money to fall back on from house sale and tbh Hubby doesn’t FINALLY care or ask about money/savings at all!
Had we still owned our own property,it would have likely been a very different story.
I’m so very sorry for the situation you are in ,it must be terrible for you .I know my comments haven’t probably helped,but I had a pal in very similar situation to yours and when her husband went into a Nursing Home last year,she was finally able to sell up (with significant family backing and a good solicitor) and has rented an easy run flat and is able to live now rather than just survive
Sending you so much support and hope things get easier for you really soon

 

[Alisongs]

Thanks for this. You've been really reassuring although I'm not sure why! I've been told by bank I can't close joint accounts without husband's Signature, and also told by various advice bodies (oh alright, forums) that if he went into care I'd have to go Court of Protection route and Court Order to sell house... Same bank advises that accounts with nil balance get closed. Doctor, of all people, has just advised that capacity to agree to sell house can be decided by a solicitor visiting my husband when arranging to sell, as doctor did that for her aunt. So there are various avenues, if no clear path. So when the hospital gets round to it they'll send my husband into temporary care to instigate and stabilise new insulin and meds regime so nurse and carers can deal and then send him home. Hospital should actually have started this reorganisation four weeks ago, as going home or into a nursing home requires he same reorganisation of his medical regime. Bill wants me to be safe and happy in a suitable forever home. Should I go before him, and we're in a retirement complex, he'd be relatively safe with purpose built flat, carers coming in, company and a warden site, until he went into care

 

[Campsie]

Hello Alisongs, I'm glad to see that you're back on this site. You sound a bit better than you were over the weekend. I was quite concerned about you as I'm sure others were too. Your situation seems to be moving forward in the right direction, albeit you still have lots to navigate your way through. Good luck with your husband and the future.

 

[Alisongs]

Hospital has done nothing in the last several weeks to adjust his regime for nursing home or home care after they suggested fewer and different jabs and Cobeneldopa patches in week 2. Not addressed excess saliva at all. Daily 2 hour long tremors, weakness and dyskinesia addressed last week by Parkinsons nurse, who said she was adding a small extra dose in the morning. He’s much more coherent in the evening, but his mornings are far worse! Turns out he’s getting extra Madopar 5x day! Overdose territory! 812 5mg per day with 800mg max suggested per day…He has a specific meal plan to avoid or cushion the effect of protein, but he still gets offered and given whatever he wants. Mealtimes vary but he’s given the Madopar at strict times even within 5 minutes of a meal… Hes left to himself for hygiene, except they nag him to do a full change of clothes every day. With nowhere to put clean or 'dirty' clothes, they get lost. There is no stimulation, no TV or radio possible in a crowded busy ward, the fobbing off response to anything staff can’t do or are too busy for is “I’ll come and see you in a bit” and they don’t / can’t. He’s got dementia he doesn’t understand!!! Now waiting for interim nursing home place where his medical regime will be adjusted so he can come home on NHS continuing care. No timescales so I’m still spending 3 hours most days travelling to and fro to entertain, stimulate and tidy him up. That takes a couple of hours. His belongings disappear even so. So I go shopping for toiletries, a daily roll of kitchen paper to wipe saliva (tissues disintegrate) newspapers, books, diabetic sweets, replacing lost flannels, shirts, shoes, phone… It’s a full time job having him in hospital, and no idea where or when the interim nursing home will be. Anywhere in a large, mostly rural county, apparently. I don’t want him home because I know he’ll get worse, but I can do better than the hospital for him, and district nurse support will enable me to leave him briefly unattended if nurse is due to visit. And we can sort out house and garage, wills, lasting powers of attorney, sell up and move somewhere easier. And get him to the dentist for a broken tooth and the barbers for a haircut. And wrest my autonomy back from the random whims of the hospital

 

[SoniaR]

Bless you. Things are really tough at the moment and you really need help and advice. With the financial side, have you had a financial assessment from social services? This is crucial. With a couple where one goes into a care home, only their half of any income or savings is taken into account. Your share is disregarded. I also read that some of his pension may well be ring-fenced for the spouse so they are not put into poverty. I read all this on the Age U.K. website, so please have a look.
I did Court of Protection for my mum as she didn’t have a Lasting Power of Attorney. It cost £1700 10 years ago and took a few months, not years, to complete so do not fear. If you are on a low income there may be concessions. Once that has been granted you can decide if you wish to sell your home and downsize, which will release funds for you and your husband. I am assuming your husband is self funding?
I’m no expert, but I’ve been through similar with my mum. There is help out there and I think Age U.K. can be a starting point. They even helped me apply for Attendance Allowance for mum. Please call them 💗💗💗

 

[Alisongs]

Bless you. Things are really tough at the moment and you really need help and advice. With the financial side, have you had a financial assessment from social services? This is crucial. With a couple where one goes into a care home, only their half of any income or savings is taken into account. Your share is disregarded. I also read that some of his pension may well be ring-fenced for the spouse so they are not put into poverty. I read all this on the Age U.K. website, so please have a look.
I did Court of Protection for my mum as she didn’t have a Lasting Power of Attorney. It cost £1700 10 years ago and took a few months, not years, to complete so do not fear. If you are on a low income there may be concessions. Once that has been granted you can decide if you wish to sell your home and downsize, which will release funds for you and your husband. I am assuming your husband is self funding?
I’m no expert, but I’ve been through similar with my mum. There is help out there and I think Age U.K. can be a starting point. They even helped me apply for Attendance Allowance for mum. Please call them 💗💗💗

 

[Alisongs]

Bless you. Things are really tough at the moment and you really need help and advice. With the financial side, have you had a financial assessment from social services? This is crucial. With a couple where one goes into a care home, only their half of any income or savings is taken into account. Your share is disregarded. I also read that some of his pension may well be ring-fenced for the spouse so they are not put into poverty. I read all this on the Age U.K. website, so please have a look.
I did Court of Protection for my mum as she didn’t have a Lasting Power of Attorney. It cost £1700 10 years ago and took a few months, not years, to complete so do not fear. If you are on a low income there may be concessions. Once that has been granted you can decide if you wish to sell your home and downsize, which will release funds for you and your husband. I am assuming your husband is self funding?
I’m no expert, but I’ve been through similar with my mum. There is help out there and I think Age U.K. can be a starting point. They even helped me apply for Attendance Allowance for mum. Please call them 💗💗💗

 

[Alisongs]

Bless you. Things are really tough at the moment and you really need help and advice. With the financial side, have you had a financial assessment from social services? This is crucial. With a couple where one goes into a care home, only their half of any income or savings is taken into account. Your share is disregarded. I also read that some of his pension may well be ring-fenced for the spouse so they are not put into poverty. I read all this on the Age U.K. website, so please have a look.
I did Court of Protection for my mum as she didn’t have a Lasting Power of Attorney. It cost £1700 10 years ago and took a few months, not years, to complete so do not fear. If you are on a low income there may be concessions. Once that has been granted you can decide if you wish to sell your home and downsize, which will release funds for you and your husband. I am assuming your husband is self funding?
I’m no expert, but I’ve been through similar with my mum. There is help out there and I think Age U.K. can be a starting point. They even helped me apply for Attendance Allowance for mum. Please call them 💗💗💗

Have made the decision that husband is coming home. What noone cares to grasp is that I cannot afford the upkeep of an overlarge home with half our resources going on a nursing home. I don't have a state pension yet. I am redundant with no earnings. If my husband goes into a nursing home, I don't have to sell as I am over 60, but I cannot afford to stay. We were on the verge of downsizing to somewhere more suitable. If he is in a home, half the joint excess would go on his care. That's if he is considered have capacity to agree to sell. If not it's Court of Protection deputyship which currently takes a year to come through, and then a Court Order to sell up without his signature, which could take a year and be very expensive, so even less money left over. All this dangling and expense is detrimental to my health and my future. (My family in the female line is very long lived. Mum 103 died 2023, gran died of food poisoning at 83, in 1972, great gran died at 80 odd in the 1930s, great great gran also died in her 80s in the 1920s.). My husband always wanted me to have a comfortable old age. I dread the next 30 odd years. My husband's wellbeing and the expense to achieve this seems to come first, last and middle while I am left to rot

 

[Alisongs]

would admiral nurses be a possibility? they are there for the carers and family of a person with dementia. they are very informative as to the details. just hold on.

 

[Alisongs]

Admiral Nurses have been in touch and very sympathetic but cannot continue to support me while my husband is in hospital or goes into care.

 

[Alisongs]

I doubt if you would be asked to leave or sell the house at tjis stage. You shouldn't be made to suffer financially or health wise the way you are. The council tax gets reduced considerably with 25% off for single occupancy, in addition to another chunk off for him being in a care home. ( when that happens.) Even without a Power of Attorney you must have some rights as his wife and therefore his next of kin. You need to keep your nerve to deal with all of this stuff, seriously, a lot of us have been there and feel better eventually. The feelings you have for your husband (now the stranger) is really quite 'normal.' Once this has all been sorted out, he's in a care home, has a full staff looking after him, he's clean, well fed and has other people to talk to, you begin to realise that is now his home and you can visit him as often or as little as suits you. You will have a life again, you will be happy albeit having to juggle what little money you'll have. You'll also be able to find out what financial benefits will be available to you. I'm really trying not to sound patronising to you, just trying find ways to help you feel a bit better. Honestly ot does get better.

Council tax reduced considerably? Come off it. 25 per cent reduction for single occupancy is about 600 a year which would cover 2 days in a home at 2024 rates

 

[Alisongs]

Hello Alisongs, I'm glad to see that you're back on this site. You sound a bit better than you were over the weekend. I was quite concerned about you as I'm sure others were too. Your situation seems to be moving forward in the right direction, albeit you still have lots to navigate your way through. Good luck with your husband and the future.

Thank you

 

[canary]

We were on the verge of downsizing to somewhere more suitable. If he is in a home, half the joint excess would go on his care. That's if he is considered have capacity to agree to sell. If not it's Court of Protection deputyship which currently takes a year to come through, and then a Court Order to sell up without his signature, which could take a year and be very expensive, so even less money left over.

Being stuck in an unsuitable home is a big problem and, unfortunately, there arnt many answers. If you find you just have to move do remember that the funds for applying for deputyship and the order to enable you to sell will both come out of his funds, not yours, Also, if he moves into residential care he can "gift" you 50% of his occupational/private pensions (he does not have to agree).

But I agree, moving when you are dealing with someone with dementia so that you are effectively on your own is not at all easy