Not sure which way to go

[yorkie46]

Hi, I haven't posted for some time but find myself in need of some support and advice again, particularly as things seem to have moved on a bit with my husband's dementia. It's a bit of a long story so if you read please bear with me.
I had a few days away in April which didn't turn out to be as successful as if hoped because I'm the second day I developed vertigo which lasted the entire time I was away and rather out a damper on things. Luckily I was staying with family so I had help when I needed it.
When I came home my husband has clearly struggled more than before with looking after himself. My daughter had kept an eye on him and taken him to her home for a couple of meals. Other than that he just had microwave meals. His medication is in blister packs but I think he'd been confused with it at times even though he has an alarm set for the times to take it, he had missed some.
I struggled with the vertigo when I came hime, he didn't understand it. I couldn't drive so was reliant on my daughter and internet shopping.
Had to ask a neighbour to take us to doctor appointment.
Just as I was beginning to feel a bit better my husband became ill on a Saturday. I had to call 111 and a doctor confirmed a chest infection and prescribed antibiotics. Next day he was worse so I called again.although there were several things I was concerned about they seemed to only be able to deal with one! Eventually another doctor came, said his chest sounded better so carry on with antibiotics and analgesics for his back. I told her he couldn't support himself in his left leg but she took no notice. Call if any change. Just after lunchtime he vomited, I called again. Another doctor came, old school no laptop! Said chest worse and as he couldn't walk without support from me he needed to be in hospital. This worries me intensely. Hospital turned out to be as difficult as I expected, he didn't know what was happening most of the time so I was visiting several times a day. After five days with the risk of norivirus he came home. I asked for help for him with showering but didn't get any. He couldn't stand to shower so I had to buy a suitable seat and had to manage myself. I was assured we would have a visit from the therapy team in a few days. This didn't happen either. After two weeks he was able to stand to shower himself again but still needed some help with drying. In addition to his physical difficulties his memory has taken a huge hit. It's improving a bit again in some areas but I'm other ways he's much worse than he was. Unfortunately he is still insists he doesn't need or want help from anyone except me.
Now to my biggest worry. I don't feel I can leave him again to have a break. Had anyone any suggestions. I haven't dared mention it to him yet. I really need to know that someone is checking in him at least twice a day. My daughter can do some of it but I don't feel she can offer help with personal care. He doesn't need a lot, mainly make sure he showers and dried himself properly. I also need to know he's taken his medication properly. He has not had a care assessment because I've been told he doesn't qualify as he doesn't need help with personal care. This has changed slightly but as I've said he doesn't need a lot of help.
He refuses to go to a day centre of go into respite care.
Will I have to pay for someone to come in to help him if he'll accept it?
I keep being told I have to have regular breaks but nobody seems to help me to do that. I've spoken to GP but she didn't offer any suggestions, just told me I need to adjust my expectations of his memory!
Sorry this has been so long. If you've ploughed through it is value any help!

 

[anxious annie]

Hi Yorkie
Sorry to hear that you're having such a hard time, with very little outside help. I would have thought that your OH should have a care assessment and clearly does need help with personal care (showering, getting meals etc) , whether he says he only wants your help or not. I would get back onto SS and explain that he has needs and this is their "duty of care" . You and your family are caring for him, but need support with this.

 

[Roseleigh]

If you're only away two or three nights and daughter will pop in why worry about the showering? Just ask her to call by daily and check the medication and make sure his meals are sorted.

 

[marionq]

I would also caution against saying he doesn't need "much help" as that will be taken at face value. If he needs help with keeping clean and medication say so and don't make it easier for SS to brush you off.

Try again for a needs assessment and carers assessment for yourself.

 

[AliceA]

Ouch, I have been/am in a virtually identical situation. Ask for an immediate urgent needs assessment, stress you are needing help to continue caring.
I am more than six months down this process, the wheels grind slowly. My husband was sent home from hospital too early.
So it all sounds too similar.

 

[yorkie46]

Thank you all for reading my take if woe!
I'm afraid one of the biggest barriers to me getting help us the fact my husband will refuse everything. He was offered someone to come weekly to do exercises with him to help improve his mobility and balance but he said he didn't need or want it. He insists he only wants me to care for him
I had a carers assessment but all this did was give me an allowance if £34 a month to help me with the cost of doing something for me! I usually use it to pay when I have a coffee out with my husband or friends. It isn't really a great deal of help to me.
Guess I'll have to try to speak to GP again sometime if I can summon the energy. I don't sleep well, suffer with anxiety so take sleeping tablets but I'm awake anywhere between 2 and 4am and just feel tired all the time. There doesn't really seem to be anything the doctor can do to help me. I make myself get out somewhere every day even if it's just shopping. Some days I manage to get out for a walk amongst trees which helps if I'm not too tired. I don't nap during the day but I sometimes bid off for five minutes after a walk and a cup of tea. I'm the other hand my husband sleeps well at night and during the day. He's an expert at watching TV with his eyes closed. He's never been asleep even when he's been snoring! Often doesn't hear me when I come in and the tv is on all day!
Well must try to sleep now.

 

[Philbo]

Hi @yorkie46

Some good advice from the other forum members.

When my wife was first diagnosed, I managed to find a local carer support charitable organisation, who sent along their area coordinator for a chat. He was previously a mental health senior nurse and had a wealth of knowledge about dealing with dementia, from both the patient's and carer's perspective.

During the 2 or 3 hours he was with us, he recounted how one lady he had helped, kept turning away social workers etc. So when he was contacted for help by relatives, she initially refused to talk to him. But he persevered and was eventually able to gain her trust and sort of acted as an intermediary with the SW etc. and was able to help get the support she needed (and would accept).

Forgive me if you've already tried going down this route but it may be worth you searching out for any support organisations in your area? The AZ society's "get help near you" is a good place to start https://www.alzheimers.org.uk/find-support-near-you or simply search on the internet for help in your location?

My experience has been that support organisations are extremely helpful in knitting together the various sources of help available. Many have developed strong networks of contacts, so know who best to contact for various situations or needs.

I wish you luck - and some well needed sleep.

Regards
Phil

 

[MrsDoyle]

Hi,
I am also in the category of not needing official care as my OH can wash himself etc. I agree with you about needing a break if only from the incessant questions about what’s happening today or tomorrow. I could scream profanities at the wall if I’m told one more time, “ I can drive now can’t I.” Then “Can’t I drive? Why can’t I drive? When’s my license coming back?” Day in day out

But last night, I wanted to run because of another development. We were going out for meal to the place we normally go every Tuesday and I came into the bedroom to find him in his home leisure stuff. He thought he was ready to go out. I suggested he put on a shirt and trousers and he was agreeable and proceeded to take off those clothes. I was looking at my phone and when I looked back he’d put the same clothes on again! So I gently suggested he needed shirt and trousers and he finally found a pair of trousers and put them on but then had great difficulty threading the belt. He then put the old jumper back on again and I said no I think a shirt would be better. He then became quite sad and said that he was going crackers. We finally got a shirt ready for him and we went out but he had a couple of dizzy spells and he was very flat and I’m shocked at what happened. Today he’s a lot brighter but he’s still planning today and tomorrow over and over again. Sorry this has been so long but my point is you must have a break, like I must have a break if at all possible. My OH has a daughter who will check up when I’m out but they make such a fuss about it I feel guilty about going anywhere – I’m off to see Bon Jovi this weekend as I’m a lot younger than my partner and love my concerts.
We had an OH visitor fir the first time yesterday and then this new development last night! He keeps asking if he’s going to get better He accepts help from his family but relies on me heavily. Do not give up having a break! Xx

 

[MrsDoyle]

P.S My OH doesn’t want help from outside either and as for group activities- no way!