Frustrated and struggling….

[Toadflax]

My husband sits hour after hour watching Sky golf. It wouldn’t be so bad if he was actually watching it but he spends most of his time sleeping.
He has nothing to say and shows no interest in anyone or anything.
Friends rarely vist but when they do he has nothing to say and falls asleep.
I can’t leave him alone but he doesn’t seem to care whether I’m here or not.
I don’t get any time off even though I’m struggling with MS.
Since October last year the only times I’ve been out was twice for hospital appointments, when I had to get friends to mind him and different friends have taken us out for lunch twice.
It’s such hard work I doubt they’ll offer again, and I think I’ll struggle for minders again.
We have no family and I feel so alone.
I don’t recognise me any more I must be a terrible person to feel so much resentment for someone I love.

 

[Orsonkartt]

Blimey. So sorry to hear this. I’m hoping that someone will come along in a few mins who may be able to offer suggestions.

 

[SeaSwallow]

Hello @Toadflax first of all you are not an awful person, what you are feeling is perfectly normal especially as you have health issues of your own.

I have read your previous posts and it is totally unacceptable that it is taking so long to arrange the medication for your husband. It might be an idea to have a word with his GP to see if they can push for the medication to be prescribed soon. From your description of your husband's behaviour it is possible that your husband also has some form of depression, and again it might be useful to discuss this with the GP.

You also need help, you cannot do this on your own, so please contact your local adult social services to arrange a needs assessment for your husband and a carers assessment for yourself. Sometimes these can lead to the carer having short weekly respite breaks where a sitter stays with the person with dementia but it does depend on the local authority.

If you ever need to talk to someone you can contact the Alzheirmer's Society's help line or the Admiral Nurses, I have attached links to both below.

Dementia Support Line

If you need dementia support, we’re here for you. Get personalised information, support and advice by calling us on 0333 150 3456.

www.alzheimers.org.uk

What is an Admiral Nurse and how can they help?

Dementia UK is a charity that provides Admiral Nurses for families affected by dementia. Call our Dementia Helpline to find out how we can support you.

www.dementiauk.org

Finally if you have not already done so it might be an idea to apply for attendance allowance, this is not means tested and could be used to pay for help around the house or even for someone to look after your husband whilst you have a break from caring, again I have attached a link.

Attendance Allowance

Attendance Allowance helps pay for your personal care if you've reached State Pension age and are disabled - rates, eligibility, apply, claim form AA1.

www.gov.uk

I know that this is a lot to take in, but just take it a step at a time and keep posting on here if you think that we can help with anything.

 

[LewyDementiaCarer]

Firstly: you are NOT a terrible person. Looking after a family member with dementia is extremely difficult and exhausting and you are on your own right now, but it doesn't need to be this way.
If you are unable to get some care-support (either at home or in a care-home) self-paid, then you should qualify for government support. Have you explored your options? Honestly, it sounds like you truly need it if you've only been out twice in 8 months for hospital appointments, that is not a healthy situation for you.

As for your husband, I know it is hard but you have to learn to accept that this disease is a progressive disease and it sounds likely that he needs a lot of rest and not too much external stimuli. I think deep down he still cares, even though it may seem like he doesn't, it's just his world is different now and he is likely struggling to process even simple information, or express what is going on inside. If you are keeping him clean, safe and comfortable that is enough, you are doing amazingly and should be proud of that. But please don't go it alone, I'm sure some more people will comment on here with advice for getting more support, it is important to look after yourself too, otherwise you can't have the energy to care for another, always remember that, do not feel guilty about it.
Keep posting, this forum is very helpful and kind. x

 

[Kevinl]

A terrible person...what? You and all the other carers on here a bunch of saints, thank you all.
I had a hard time caring wife then mum too, not ideal and I know I've said it before, but I'd do it all again starting tomorrow if I could.
Sat here alone on my boat for the weekend is good but alone was never the plan.
Might be pub o'clock soon, but booze and boats don't mix especially when you're sailing solo. Caring is hard but after can be hard too. K

 

[LewyDementiaCarer]

A terrible person...what? You and all the other carers on here a bunch of saints, thank you all.
I had a hard time caring wife then mum too, not ideal and I know I've said it before, but I'd do it all again starting tomorrow if I could.
Sat here alone on my boat for the weekend is good but alone was never the plan.
Might be pub o'clock soon, but booze and boats don't mix especially when you're sailing solo. Caring is hard but after can be hard too. K

Always wise words from K.

What kind of boat do you have? I used to sail a lot.

 

[Grahamstown]

My husband sits hour after hour watching Sky golf. It wouldn’t be so bad if he was actually watching it but he spends most of his time sleeping.
He has nothing to say and shows no interest in anyone or anything.
Friends rarely vist but when they do he has nothing to say and falls asleep.
I can’t leave him alone but he doesn’t seem to care whether I’m here or not.
I don’t get any time off even though I’m struggling with MS.
Since October last year the only times I’ve been out was twice for hospital appointments, when I had to get friends to mind him and different friends have taken us out for lunch twice.
It’s such hard work I doubt they’ll offer again, and I think I’ll struggle for minders again.
We have no family and I feel so alone.
I don’t recognise me any more I must be a terrible person to feel so much resentment for someone I love.

Absolutely not a terrible person, I felt exactly the same and it does tear you up. I couldn’t believe that I could feel this way about my dear husband, I think because he no longer was that person. I found the recommendation on the forums for the book The Selfish Pig’s Guide to Caring by Hugh Marriott very helpful indeed.

 

[Kevinl]

Sat here now in a 24 foot Atlanta in the marine, Bridgewater canal, my barge is near Chester and either I'm moving it to me or I move nearer to there.
It was the one place where my now late wife seemed to relax and become her old self.
Maybe it's the confined environment or just the gentle rocking of the boat, I'll never know. K

 

[LewyDementiaCarer]

Sat here now in a 24 foot Atlanta in the marine, Bridgewater canal, my barge is near Chester and either I'm moving it to me or I move nearer to there.
It was the one place where my now late wife seemed to relax and become her old self.
Maybe it's the confined environment or just the gentle rocking of the boat, I'll never know. K

Sounds lovely, I love that you have those wonderful memories with your late wife, I think nature does that to us all in some way, the closer we get to nature the more we find peace. it's good to hear you are getting back closer to the boat, keep us updated K, I'm sure there will be many projects onboard, from 1 sailor to another, I know there always are! But that's half the love of it.

 

[Fotoliza]

My husband sits hour after hour watching Sky golf. It wouldn’t be so bad if he was actually watching it but he spends most of his time sleeping.
He has nothing to say and shows no interest in anyone or anything.
Friends rarely vist but when they do he has nothing to say and falls asleep.
I can’t leave him alone but he doesn’t seem to care whether I’m here or not.
I don’t get any time off even though I’m struggling with MS.
Since October last year the only times I’ve been out was twice for hospital appointments, when I had to get friends to mind him and different friends have taken us out for lunch twice.
It’s such hard work I doubt they’ll offer again, and I think I’ll struggle for minders again.
We have no family and I feel so alone.
I don’t recognise me any more I must be a terrible person to feel so much resentment for someone I love.

Hi @Toadflax I also have an OH with Vascular dementia. I can relate to your feelings as I have MS and Osteoporosis. When you need support yourself and are doing the supporting for someone else it is very hard.
We do have a daughter, but she has difficulty giving us the time we need. Have you tried asking AgeUK for a PA/Help in the home? I have been very lucky to find a lovely person for a couple of hours a week to help me do stuff that I used to get help with from OH.
You are not a terrible person. You are exhausted.

All the best.

 

[Dunroamin]

Sat here now in a 24 foot Atlanta in the marine, Bridgewater canal, my barge is near Chester and either I'm moving it to me or I move nearer to there.
It was the one place where my now late wife seemed to relax and become her old self.
Maybe it's the confined environment or just the gentle rocking of the boat, I'll never know. K

Water and a proximity to it (I'm usually IN it swimming) are SO SO therapeutic for me. I am sure it was thus with your wife, and pleased she found solace. In years past my on-surface acitivities were helping crew a Swan class, ironically for a family whose father had dementia. Role reversal eh?

 

[Toadflax]

Thank you everyone for your kind words of advice and support. I’m feeling rather more positive today.
I do have a care package in place for me, twice a day, which was arranged by Social Services, but I’ve been means tested and pay the full cost of. The same carers also help my husband because he can’t get his compression socks on and off, and I’ve lost my fine motor skills so can’t manage that. We pay in full for that too. I have claimed and been granted Attendance Allowance and of course my own PIP payments which aren’t means tested and helps towards the cost. I can’t help but think that had we smoked, drunk or drugged our way to ill health it would all be free, but I’m grateful we don’t have to contend with being poor (not that we’re wealthy but we have enough) as well as disabled (me) and muddled (husband)
GP can’t chase up meds from Memory Clinic, or so they say. I’ll just have to keep making a nuisance of myself, until they listen or ……….. well I won’t say that just now!
I’ve taken on board all your suggestions AgeUK etc and thank you all again. What a wonderful, supportive and useful forum this is.
I lost my mum to dementia in 1997, I’d hoped things might have improved since then, but I’m not convinced.
I now realise just how hard it must have been for my dad who hid from me how bad things were until he reached the end of his tether.

 

[windyhill]

Thank you everyone for your kind words of advice and support. I’m feeling rather more positive today.
I do have a care package in place for me, twice a day, which was arranged by Social Services, but I’ve been means tested and pay the full cost of. The same carers also help my husband because he can’t get his compression socks on and off, and I’ve lost my fine motor skills so can’t manage that. We pay in full for that too. I have claimed and been granted Attendance Allowance and of course my own PIP payments which aren’t means tested and helps towards the cost. I can’t help but think that had we smoked, drunk or drugged our way to ill health it would all be free, but I’m grateful we don’t have to contend with being poor (not that we’re wealthy but we have enough) as well as disabled (me) and muddled (husband)
GP can’t chase up meds from Memory Clinic, or so they say. I’ll just have to keep making a nuisance of myself, until they listen or ……….. well I won’t say that just now!
I’ve taken on board all your suggestions AgeUK etc and thank you all again. What a wonderful, supportive and useful forum this is.
I lost my mum to dementia in 1997, I’d hoped things might have improved since then, but I’m not convinced.
I now realise just how hard it must have been for my dad who hid from me how bad things were until he reached the end of his tether.

I have the same problem as you except at the other end of the scale. My wife wakens at 5 or 6am then goes non stop (achieving nothing by the way) the whole day until 10pm when she falls to sleep naturally. Think of the duracell bunny and multiply by 10.
She is extremely active made worse by having delusions, hallucinations, paranoia, not to mention Capgras, mood swings, aggression, verbal abuse , etc., ....... I could go on.
I would give a lot to get her to sleep for a couple of hours of an afternoon. Like you I pay for any help I get but that doesn't necessarily get me attention or solutions. I am at the same impasse as you in that my GP refers us to the memory clinic, who are supposed to liaise with their psychiatrist and seek appropriate medication, but it doesn't work out that way and there is a block somewhere in the line. I don't know whether it is the psychiatrists or the memory clinic staff, or indeed there is really no solution. I am now being pestered to start making dinner (an hour early) so I'll have to make myself present in the kitchen otherwise I'll get no peace.
I sympathise with you because I am in the same predicament. A little John Barleycorn now and again relaxes me a little.