Terrified Wife

[Chizz]

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

Hi @Alisongs
If you do decide to sell, and have to apply for a Deputyship Order to the CoP, you can apply for the Court's agreement to a sale, and Court's agreement to sign on OH's behalf or for sale without his signature all at the same time to save the enormously long time this Deputyship takes. You might a letter from the care home matron or GP to confirm your OH's lack of capacity.
Best wishes

 

[Alisongs]

Hi @Alisongs
If you do decide to sell, and have to apply for a Deputyship Order to the CoP, you can apply for the Court's agreement to a sale, and Court's agreement to sign on OH's behalf or for sale without his signature all at the same time to save the enormously long time this Deputyship takes. You might a letter from the care home matron or GP to confirm your OH's lack of capacity.
Best wishes

Thanks

 

[Alisongs]

O1. 06.2024

A summary. Much has changed since my first post. Thanks to eight weeks of errors, indifference and potentially broken law by ward staff at the hospital, my husband is coming home. I thought my husband would be better off in hospital or a nursing home. I'm a damn sight more careful and precise about his diet and medication!

To get round my husband not wanting me to be his carer nurse and nag, and to return to a marital relationship, a nurse will come in to do his insulin jabs. Apparently free under NHS continuing care. If he cannot self manage, NHS protocols require a nurse to take over. It is not legal to give the carer no option.

The hospital is getting jabs down to twice a day. (Not funny how they expected me to do it 5x day!).

The hospital suggested 6 weeks ago that he have a slow release patch for his Parkinsons meds. Now they want carers several times a day for his capsules etc. Still tossing between free continuing care and paid for social care.

I keep reminding the hospital of the slow release patches. Once or twice a day so a nurse could do it with the jabs. (Or Bill could, or I could as it's not intrusive like a jab or tablets.) Avoids the highs and lows and disadvantages of the 5x day high doses so far. Hospital currently has him on more than the maximum! And he's more shakey than ever.

And he'd be back to carefully calculated timed meals made by me. I have to cook for myself anyway.

And he'd be able to interact with people other than me.

I'd be able to interact with people other than Bill.

I could go out and about if the nurse was due and could come back later, all safe in the knowledge that Bill is not left alone for hours, getting up to all sorts of mischief!

Bill could be taken by me in a taxi to barbers, dentist etc. He needs both ASAP.

We might get out by local bus every week or so, for a bit of sightseeing or to quiet cafes.

He now has ear defenders to block out unnecessary noise and distress.

Having lost or damaged two phones in hospital, I've got Bill another simple one. With 10.00pcm unlimited calls (and texts). If I go out, I'll put a call on loudspeaker to my mobile, so we're in constant communication. If he hangs up I can ring back.

Yes I know he'll deteriorate further and get as far as needing fulltime nursing home care. If he's lucky he'll die or go completely gaga before then.

From getting married to moderately severe dementia has taken less than two years.

The decline has been too fast for either of us to cope with so far.

His eight weeks in hospital have kept me busier than ever, but I've had time to get proper advice and start getting things done for a move to a safe forever home for us both.

Wills, LPOAs, house refurb and clearance will all go ahead. If Bill balks, there's always the Court of Protection deputyship route.

If Bill ever stays overnight in hospital again, I'll be there 247, and making sure that Deprivation of Liberty Safeguards is not factually incorrect or illegally in place.

Bill can have a life. I can have a life.

 

[Lostinthisdesert]

O1. 06.2024

A summary. Much has changed since my first post. Thanks to eight weeks of errors, indifference and potentially broken law by ward staff at the hospital, my husband is coming home. I thought my husband would be better off in hospital or a nursing home. I'm a damn sight more careful and precise about his diet and medication!

To get round my husband not wanting me to be his carer nurse and nag, and to return to a marital relationship, a nurse will come in to do his insulin jabs. Apparently free under NHS continuing care. If he cannot self manage, NHS protocols require a nurse to take over. It is not legal to give the carer no option.

The hospital is getting jabs down to twice a day. (Not funny how they expected me to do it 5x day!).

The hospital suggested 6 weeks ago that he have a slow release patch for his Parkinsons meds. Now they want carers several times a day for his capsules etc. Still tossing between free continuing care and paid for social care.

I keep reminding the hospital of the slow release patches. Once or twice a day so a nurse could do it with the jabs. (Or Bill could, or I could as it's not intrusive like a jab or tablets.) Avoids the highs and lows and disadvantages of the 5x day high doses so far. Hospital currently has him on more than the maximum! And he's more shakey than ever.

And he'd be back to carefully calculated timed meals made by me. I have to cook for myself anyway.

And he'd be able to interact with people other than me.

I'd be able to interact with people other than Bill.

I could go out and about if the nurse was due and could come back later, all safe in the knowledge that Bill is not left alone for hours, getting up to all sorts of mischief!

Bill could be taken by me in a taxi to barbers, dentist etc. He needs both ASAP.

We might get out by local bus every week or so, for a bit of sightseeing or to quiet cafes.

He now has ear defenders to block out unnecessary noise and distress.

Having lost or damaged two phones in hospital, I've got Bill another simple one. With 10.00pcm unlimited calls (and texts). If I go out, I'll put a call on loudspeaker to my mobile, so we're in constant communication. If he hangs up I can ring back.

Yes I know he'll deteriorate further and get as far as needing fulltime nursing home care. If he's lucky he'll die or go completely gaga before then.

From getting married to moderately severe dementia has taken less than two years.

The decline has been too fast for either of us to cope with so far.

His eight weeks in hospital have kept me busier than ever, but I've had time to get proper advice and start getting things done for a move to a safe forever home for us both.

Wills, LPOAs, house refurb and clearance will all go ahead. If Bill balks, there's always the Court of Protection deputyship route.

If Bill ever stays overnight in hospital again, I'll be there 247, and making sure that Deprivation of Liberty Safeguards is not factually incorrect or illegally in place.

Bill can have a life. I can have a life.

I take my hat off to you! Very well done and thank you for sharing. When I find myself collapsing under the caring load, as I frequently do, I will take courage from this. The system is wholly unfair to leave PWD and carer to sink or swim. People on this forum provide armbands which sometimes help!

 

[jennifer1967]

Do you have to change the slow release patches a few times a day? If so, his skin is going to get sore and may lead to a reaction to the glue which is awful as I've had a reaction to the glue on morphine patches

 

[Alisongs]

Do you have to change the slow release patches a few times a day? If so, his skin is going to get sore and may lead to a reaction to the glue which is awful as I've had a reaction to the glue on morphine patches

My understanding is, (as noone gives me any information 😂 willingly} is a patch is changed once or twice in 24 hours. At home Bill wears a Charco anti tremor device to mitigate his Parkinsons. That has strong glue, can be weeks between replacements, and he's fine.

 

[SeaSwallow]

My understanding is, (as noone gives me any information 😂 willingly} is a patch is changed once or twice in 24 hours. At home Bill wears a Charco anti tremor device to mitigate his Parkinsons. That has strong glue, can be weeks between replacements, and he's fine.

My husband wears patches for his dementia and we have to ensure that each day they are moved to a different location over a 14 day cycle. Sometimes the glue does cause a slight reddening of the skin.

 

[jennifer1967]

My understanding is, (as noone gives me any information 😂 willingly} is a patch is changed once or twice in 24 hours. At home Bill wears a Charco anti tremor device to mitigate his Parkinsons. That has strong glue, can be weeks between replacements, and he's fine.

Just be careful
Mine was done weekly and I got contact dermatitis after a year of using them then was allergic to the glue. It was a miserable time

 

[Alisongs]

My husband wears patches for his dementia and we have to ensure that each day they are moved to a different location over a 14 day cycle. Sometimes the glue does cause a slight reddening of the skin.

Thanks

 

[Alisongs]

Just be careful
Mine was done weekly and I got contact dermatitis after a year of using them then was allergic to the glue. It was a miserable time

Thank you

 

[Alisongs]

I take my hat off to you! Very well done and thank you for sharing. When I find myself collapsing under the caring load, as I frequently do, I will take courage from this. The system is wholly unfair to leave PWD and carer to sink or swim. People on this forum provide armbands which sometimes help!

Need a submarine!

 

[Campsie]

Dear Alisongs, I hope you don't mind getting a compliment. I see such a great change in how you were feeling only a week ago. You have made good decisions and are most definitely moving in the right direction. I noticed that you are able to give good advice to others too. I know it's still a hard time for you but you seem to have found strength to cope. My sincere apologies if you think I am being condescending.

 

[Alisongs]

Dear Alisongs, I hope you don't mind getting a compliment. I see such a great change in how you were feeling only a week ago. You have made good decisions and are most definitely moving in the right direction. I noticed that you are able to give good advice to others too. I know it's still a hard time for you but you seem to have found strength to cope. My sincere apologies if you think I am being condescending.

Really appreciate this, thank you. What I have kept coming up against in the real world with "experts" is that such advice is often incorrect, incomplete, mistaken, misleading, condescending, longwinded, potentially illegal and downright infuriating!...... Today's example was my husband's blood sugar being over 20 mid afternoon (normal people are around 5!). I waited half an hour for promised insulin to arrive. Husband ever more incoherent. Could go comatose and be brain damaged or die. When I did the jabs at home, I was told to aim for 8 to 10 and give extra insulin if over 12!
...Queried with consultant who told me she'd make the judgement call at some point, and I was being rude...... I pointed out I had had to deal with 5 jabs and balancing his intake of food and insulin every day for many months, I was worried he could die......She did eventually turn up, she discussed the protocol and her decision with me. I think she realised I was not an idiot. Why do medical professionals treat patients and families as total ignoramuses? An elderly friend whose wife has dementia also gets treated like this. His wife was a surgeon and he was a consultant pathologist and head of department for thirty years!

 

[jennifer1967]

Really appreciate this, thank you. What I have kept coming up against in the real world with "experts" is that such advice is often incorrect, incomplete, mistaken, misleading, condescending, longwinded, potentially illegal and downright infuriating!...... Today's example was my husband's blood sugar being over 20 mid afternoon (normal people are around 5!). I waited half an hour for promised insulin to arrive. Husband ever more incoherent. Could go comatose and be brain damaged or die. When I did the jabs at home, I was told to aim for 8 to 10 and give extra insulin if over 12!
...Queried with consultant who told me she'd make the judgement call at some point, and I was being rude...... I pointed out I had had to deal with 5 jabs and balancing his intake of food and insulin every day for many months, I was worried he could die......She did eventually turn up, she discussed the protocol and her decision with me. I think she realised I was not an idiot. Why do medical professionals treat patients and families as total ignoramuses? An elderly friend whose wife has dementia also gets treated like this. His wife was a surgeon and he was a consultant pathologist and head of department for thirty years!

I don't think it's confined to the older person, I'm only 57 husband 76 and I still get treated that I only have half a brain sometimes.

 

[Alisongs]

I don't think it's confined to the older person, I'm only 57 husband 76 and I still get treated that I only have half a brain sometimes.

I used to know a self made millionaire entrepreneur who referred to himself as a former beach bum and surfer dude who was so out of it on illicit substances, that he didn't have two brain cells to rub together!

 

[jennifer1967]

I used to know a self made millionaire entrepreneur who referred to himself as a former beach bum and surfer dude who was so out of it on illicit substances, that he didn't have two brain cells to rub together!

He obviously got something right

 

[Skylark/2]

Just 2 minor suggestions. Have YOU applied for the Attendance Allowance, I filled out the forms with help from local carers Association. unexpectedly got the higher rate.
And have you applied for a reduction in your council tax, could be around 25% off.
Full of admiration for your strength under horrendous circumstances.

 

[Alisongs]

Just 2 minor suggestions. Have YOU applied for the Attendance Allowance, I filled out the forms with help from local carers Association. unexpectedly got the higher rate.
And have you applied for a reduction in your council tax, could be around 25% off.
Full of admiration for your strength under horrendous circumstances.

Carers Matter rep coming Wednesday we'll discuss it then. Husband wasn't keen on Attendance Allowance and refused to answer questions for 2 years. He's changed his tune now! Council tax reduction only for Single Occupancy. CouncilForms for reduction for dementia specify the victim has to be the sole occupant. Another example of wrong information written in stone! Might discreetly check with council and then the government website. If the council form is definitely wrong, a gentle word in a relative's direction will work wonders. Council Chief Executive......

 

[My Mum's Daughter]

I don't know who gave you the information but AS say that someone with "Severe mental impairment" is disregarded for council tax.

Discounts, disregards and exemptions on council tax

Some people will be eligible for discounts, disregards and exemptions on their council tax. All of these terms have different meanings, so it’s important to know the difference.

www.alzheimers.org.uk

 

[leny connery]

oh wow....I heard you can just tell SS you cannot do it anymore and they will have to take over? love and hugs from me and all of us here. Please seek help, and hope you find it somehow