why do we have to reach breaking point?

[jay6]

I'd reached a stage of complete burnout. Had enough, frustrated, depressed, not coping well etc. No help as was just told we are self funding so need to sort things out ourselves. OH refused respite so just struggled on.
Then tripped and fell so had to call ambulance. He was admitted to hospital as he may have bumped his head and is on blood thinners. Was on he floor for 5 1/2 hours waiting for ambulance. ok he wasn't considered an emergency, I understand that.
CT scan clear, Physio assessed him, walked along corridor and did stairs so deemed ok to be discharged. But I explained how things had been. I didn't have a problem with caring but needed respite now and again as haven't had any for 10 years (since a stroke) and the verbal abuse being exceptionally hard to deal with. Lovely nurse, said she would keep him in for a couple of days while a care plan can be put into place, and give me a break as I sounded like I was at 'carer burnout' great I thought. He is in hospital, being looked after. I haven't visited for 4 days, terrible I can here some saying but I just couldn't do it. I keep in touch with the OT who said he was fine.
Anyway 4 now feeling very guilty.

 

[Izzy]

Not terrible in any way @jay6. Thank goodness for that nurse. She was so right about carer burn out. I know it’s so easy for me to say but please don’t feel guilty. You need this time. I hope you can something more permanent sorted out regarding support/respite.

I hope too that you have a good night’s sleep.

 

[jugglingmum]

Don't feel guilty. You did the right thing.

He's safe and you can recover.

 

[try again]

Let them look after him and insist on seeing the package they have in place before he's released .
It is galling that carers are left until they can't go on anymore 😡

Try and get some respite. ♥️

 

[Frankie147]

When my loved one was admitted to hospital after me taking him backwards and forwards to A and E for three days I knew I just had to have a bit of breathing space, so I went home, packed a bag and went off to the coast for two nights, turning my mobile off as well, they couldn’t send him home without me being there, yes, I did feel guilty but with no support I deserved that little breather, sadly he is now in a care home, I miss him so much but I know this was the right thing to do, both for him and myself, I visit him 3 or 4 times a week now for a few hours each time, we normally have lunch together when I am there, no other family member visits him, always have a reason why they cant(he has two children from previous marriage) one day they will regret it but that’s their choice, there is no way I could stay away, still love him to bits, and make sure I tell him that every day

 

[Lawson58]

I'd reached a stage of complete burnout. Had enough, frustrated, depressed, not coping well etc. No help as was just told we are self funding so need to sort things out ourselves. OH refused respite so just struggled on.
Then tripped and fell so had to call ambulance. He was admitted to hospital as he may have bumped his head and is on blood thinners. Was on he floor for 5 1/2 hours waiting for ambulance. ok he wasn't considered an emergency, I understand that.
CT scan clear, Physio assessed him, walked along corridor and did stairs so deemed ok to be discharged. But I explained how things had been. I didn't have a problem with caring but needed respite now and again as haven't had any for 10 years (since a stroke) and the verbal abuse being exceptionally hard to deal with. Lovely nurse, said she would keep him in for a couple of days while a care plan can be put into place, and give me a break as I sounded like I was at 'carer burnout' great I thought. He is in hospital, being looked after. I haven't visited for 4 days, terrible I can here some saying but I just couldn't do it. I keep in touch with the OT who said he was fine.
Anyway 4 now feeling very guilty.

Like you, I have been caring for OH for ten years, not just with dementia but heart failure as well.

My husband is continent and looks after his personal hygiene, he can prepare simple meals and can actually still play bridge. So while I don’t experience sone of the awful things that other carers do, I am just plain running out of puff. I am sooooo tired and fed up but he would refuse respite and as he can still cope with his personal stuff, he couldn’t see that respite is necessary and about me, not him.

I simply need a break, time without him breathing down my neck. His world only includes me as his personal assistant and chauffeur. The total lack of empathy is making me snappy and irritable and right at this very moment, I don’t care much, definitely no guilt. But I have been here before and somehow, I will dig myself out of the hole and keep on going.

 

[jay6]

Thanks for your replies @Izzy @jugglingmum @try again @Frankie147 and @Lawson58 unfortunately I decided just after posted to visit got there just under hour before end of visiting. NOT good
I arrived to find him he sitting in a chair with nappy on, no trousers, unrecognisable, looked like a tramp with bell going off. First thing he said was 'I badly need the toilet' So I started getting him up. But he said 'no I'm not allowed to get up, I have to stay in chair' so without arguing sat him back down feeling quite puzzled.
Nurse turned up, turned bell off told me Physio said he can't get up and needs hoist and went off. 10 mins later OH still complaining badly needing toilet and set bell set off again. Yes you’ve guess it. Too late, **** himself as could no longer wait!
I asked staff why he has been left sitting in a chair and not encouraged to walk to loo etc. reply was simply ‘He doesn’t want to and doesn’t bother to even try’ I asked how he was expected to move about without help or a stick, when he is partly disabled but got no response.
I went on to ask why he had a nappy and no trousers, again ‘It’s what he wants and we have to respect his wishes’ I know for a fact he hates the idea of padded pants, let alone nappies as I can’t get him to wear them at night. (had 2 or 3 wets) When I said I found that very hard to believe. I got 'He's got Dementia, so probably doesn't remember' How dare they!!!! He may have early dementia and does have a few problems, mostly his anger and abuse towards only me. But his memory is still ok. Doesn't have a problem with that so far.
They informed me that as his mobility is so bad he is on waiting list for cottage hospital for rehab. So the story so far.
Day 1 - Taken to hospital, checked, CT scan etc. then seen by physio who says he walked down corridor and did stairs so was satisfied he was ok to be discharged. But after talking nurse decided to keep him a couple of days for a support plan.
Day 2-5 In ward, not allowed to walk as they said his mobility too bad. But had no idea of how long that would take. In mean time I suppose he would just get worse
Had a terrible night and on phone all day trying to sort things out.
Just got in so will update as soon as I've had a coffee and sandwich, just wanted to quickly respond as you were all so kind to read my rant.

 

[Izzy]

Oh @jay6. That sounds just horrific.

I hope you are able to talk to someone in charge at some point as this really sounds unacceptable.

I also hope you manage to get some rest tonight.

 

[jennifer1967]

thats so wrong, you dont leave a person who wants the toilet. is it able to meet his needs or would he have to move for that? take care of yourself and please eat and drink. hope you can have a good rest as well. maybe it will look different in the morning after a rest

 

[jay6]

Ok so I was on phone all day, got nowhere talking to ward. The ward sister was conveniently at a ‘meeting’.
Contacted PALS, who said they would contact the ward and look into the problem.
Frustrated at not really getting anywhere so contacted my GP surgery. I didn’t really expect them to get involved as he was in the hospital but said they would also contact the ward to see what was going on.
Later the ward sister called me to ‘discus the confusion’ Didn’t really get anywhere because she just supported her staff and said my OH didn’t want any trousers on and he was unable to walk, wouldn't even try. She said he didn’t want to do anything and didn’t talk to anyone. I told her I didn’t believe it. Then it came
'He’s got dementia,' so there it is I had the answer!!!!! It must be true!!!!!
I told her that when he was about to be discharged (before the ward) the previous nurse had said he had been chatty, funny and jokey. So then we had a complete change to ‘He’s been like that here’ I gave up!
Anyway got a call 3pm to say he was being transferred to community hospital for rehab! So some other poor person has lost his bed and now has to wait a bit longer.
Just been in and the change already was noticeable. Fully dressed and no nappy. Got him up and walked a few steps but he was clearly struggling after not walking for 4 days.
Feeling exhausted, tied and undone all the good of the break. Oh well that's life!
I'm sure I'll sleep well tonight thanks @Izzy
Totally agree with you @jennifer1967 I couldn't believe the nurse turned the call button off and didn't come back. He would have used the toilet if he hadn't had a nappy put on and if someone could have helped him. I can't believe they couldn't have found him a stick in a hospital. Makes you wonder what the physio use if there's no walking aids. Ridiculous and totally untrue!

 

[Jelly171]

Like you, I have been caring for OH for ten years, not just with dementia but heart failure as well.

My husband is continent and looks after his personal hygiene, he can prepare simple meals and can actually still play bridge. So while I don’t experience sone of the awful things that other carers do, I am just plain running out of puff. I am sooooo tired and fed up but he would refuse respite and as he can still cope with his personal stuff, he couldn’t see that respite is necessary and about me, not him.

I simply need a break, time without him breathing down my neck. His world only includes me as his personal assistant and chauffeur. The total lack of empathy is making me snappy and irritable and right at this very moment, I don’t care much, definitely no guilt. But I have been here before and somehow, I will dig myself out of the hole and keep on going.

I feel I can understand this: it's only been 18 months since my husband's diagnosis and he is pretty with it. However, I am his world, he rarely goes anywhere without me and i feel on call 24 hours a day. It's the silly things like he can't put on a jacket or do up a zipper - he'll watch the same tv program 3 times in a row, can't text etc, etc. Just little things but it's amazing how they add up over a day, a week, or a month. I get tired and he doesn't see it. He's still taking care of himself but there is so much more. Thanks for listening. When I see what other people are coping with I'm very lucky but some days, it feels very heavy.

 

[jay6]

I feel I can understand this: it's only been 18 months since my husband's diagnosis and he is pretty with it. However, I am his world, he rarely goes anywhere without me and i feel on call 24 hours a day. It's the silly things like he can't put on a jacket or do up a zipper - he'll watch the same tv program 3 times in a row, can't text etc, etc. Just little things but it's amazing how they add up over a day, a week, or a month. I get tired and he doesn't see it. He's still taking care of himself but there is so much more. Thanks for listening. When I see what other people are coping with I'm very lucky but some days, it feels very heavy.

Funny how all the little things add up, it's tiring. Mine can still wash and dress but can't do zips or buttons but that's more to do with the loss of one hand from stroke. He can get himself something to eat. Seems to think he lives in a hotel though as I do everything. Mine won't go into respite which is why it was nice to at least get a break while he's in hospital now.
Reading others on here, some have it a lot harder than me apart from the abuse. so I'm lucky at moment but I know it is coming!

 

[Evo 2810 ke]

Funny how all the little things add up, it's tiring. Mine can still wash and dress but can't do zips or buttons but that's more to do with the loss of one hand from stroke. He can get himself something to eat. Seems to think he lives in a hotel though as I do everything. Mine won't go into respite which is why it was nice to at least get a break while he's in hospital now.
Reading others on here, some have it a lot harder than me apart from the abuse. so I'm lucky at moment but I know it is coming!

If I was to start writing it would make a best seller
I also accepted rest bite it failed miserably
I have come to the conclusion I will die looking after him

 

[Gosport Nancy]

I relocated from Hampshire to East Sussex to look after a friend who was about to leave the hospital following a major operation. I moved into his flat and we shared the same place for 9 years until he died last November.

He had very serious and progressive medical conditions but refused to let anyone but me be his full-time carer. In 2016 I ended up in hospital with multiple organ failure, most likely due to the caring role with no support. It was at that point that I decided to explain that I needed support and for a short while we had a cleaner come in a couple of times a week.

This was short-lived as our help moved away and wasn't replaced. My friend had several hospital stays and we kept in touch with video calls and on social media. It had to be that way due to me not being well enough to keep doing hospital visits. I stayed home and slept a lot.

Now I am on my own in the flat, I am able to buy in all the help I need, so I now 100% support any carer who wants respite set up. It's so hard, needing to fight for so many basic things.

 

[canary]

I have come to the conclusion I will die looking after him

Please dont even semi-joke about this - it is a real risk
As someone said on here - dementia will take one life, dont let it take two

If that respite didnt work out, try somewhere else

 

[jay6]

Just an update. This is 4th day since being moved to the cottage hospital and all I can say is. I've been in everyday just for an hour to keep an eye on things this time and what a change. He has been helped to get up from the chair, to do a few steps each day and yesterday was walking on his own with his tripod again.
Problem now is, I've had another few days break without worrying and I'm not sure I want him back. It's been so nice pottering about without any verbal abuse or walking on eggshells. He doesn't like being in hospital and wants to come home. He's been pleased to see me and quite nice but I know that won't last if he comes home.
I hate this terrible illness!!!!!!!!!

 

[Violet Jane]

@jay6, you have most leverage when your PWD is in hospital. Tell the hospital and SS in blunt terms that you won't care for your husband at home unless and until his abusive behaviour is addressed. Insist that he is started on the medication whilst he's in hospital. Once he's home everyone will lose interest and you'll just be left to it.

I'm wondering why you are visiting your husband every day. Why not treat this as a period of respite? You might not get another.

 

[AlzWife]

I'd reached a stage of complete burnout. Had enough, frustrated, depressed, not coping well etc. No help as was just told we are self funding so need to sort things out ourselves. OH refused respite so just struggled on.
Then tripped and fell so had to call ambulance. He was admitted to hospital as he may have bumped his head and is on blood thinners. Was on he floor for 5 1/2 hours waiting for ambulance. ok he wasn't considered an emergency, I understand that.
CT scan clear, Physio assessed him, walked along corridor and did stairs so deemed ok to be discharged. But I explained how things had been. I didn't have a problem with caring but needed respite now and again as haven't had any for 10 years (since a stroke) and the verbal abuse being exceptionally hard to deal with. Lovely nurse, said she would keep him in for a couple of days while a care plan can be put into place, and give me a break as I sounded like I was at 'carer burnout' great I thought. He is in hospital, being looked after. I haven't visited for 4 days, terrible I can here some saying but I just couldn't do it. I keep in touch with the OT who said he was fine.
Anyway 4 now feeling very guilty.

Dear jay6,
You should not feel guilty at all! it is terrible that we can't get this type of respite and care for our loved ones until something bad happens, and even then we need some luck (like you had with this nurse).
I wish you more luck in finding a permanent arrangement that gives you the help you need and deserve!

 

[AlzWife]

@jay6, you have most leverage when your PWD is in hospital. Tell the hospital and SS in blunt terms that you won't care for your husband at home unless and until his abusive behaviour is addressed. Insist that he is started on the medication whilst he's in hospital. Once he's home everyone will lose interest and you'll just be left to it.

I'm wondering why you are visiting your husband every day. Why not treat this as a period of respite? You might not get another.

I agree on all fronts. In the US (I believe) once a loved one with dementia is admitted to the hospital for any reason, a relative can refuse to take them home as they would be in effect taking full legal responsibility for this disabled person who cannot care for himself. Do not sign the discharge papers if you are not ready to give up your life again. The hospital must find an appropriate nursing home placement.

 

[AlzWife]

Like you, I have been caring for OH for ten years, not just with dementia but heart failure as well.

My husband is continent and looks after his personal hygiene, he can prepare simple meals and can actually still play bridge. So while I don’t experience sone of the awful things that other carers do, I am just plain running out of puff. I am sooooo tired and fed up but he would refuse respite and as he can still cope with his personal stuff, he couldn’t see that respite is necessary and about me, not him.

I simply need a break, time without him breathing down my neck. His world only includes me as his personal assistant and chauffeur. The total lack of empathy is making me snappy and irritable and right at this very moment, I don’t care much, definitely no guilt. But I have been here before and somehow, I will dig myself out of the hole and keep on going.

Lawson58, Your post resonates! It feels like I am my husband's servant & god forbid I disagree with him. His hygiene is terrible and he has no idea. I have to cajole him into the shower and wash him so it's done right. He will wear the same dirty clothes for weeks if I don't take them away and replace them. It's like having a toddler that never grows up. He shadows me. He talks nonsense all day. I can't leave him alone to have my own life--its like losing your life twice--the first life lost is the one you shared with your partner; the second life lost is your independence. The lack of connection and empathy is truly the hardest part because we have lost a partner and friend. That just compounds all the practical challenges.