In Limbo

archiebald

Registered User
Jan 12, 2016
44
0
Hi I am new to the forum hope I am using it correctly, I am full time carer to my hubby had to take early retirement last Dec .He was diagnosed with early on set Alz 2015 age 57 our lives like others changed from that day the decline has been rapid the past two years he is at the stage he needs to be prompted when eating toileting is a nightmare he needs to be prompted to pee it takes him ages to have one , showering he hates I am his only carer we have no help whatsoevet SW have him allocated but have not been in contact no resources altho I have called them they say they will get back there is no early on set support groups in our area we can go to I am at the stage I could run altho I wont I get angry at times and have raised my voice I know I shouldnt and feel awfull when I have he cannot help how he is I looked after his mum even when I was working she had Alz too died last year she was in CH past 4 years but I seemed to have more patience with her ...I at times feel as tho I am outside looking in at myself cant go out on my own no one to care for OH even for an hour I feel I am in limbo
 

Duggies-girl

Registered User
Sep 6, 2017
3,620
0
Hi I am new to the forum hope I am using it correctly, I am full time carer to my hubby had to take early retirement last Dec .He was diagnosed with early on set Alz 2015 age 57 our lives like others changed from that day the decline has been rapid the past two years he is at the stage he needs to be prompted when eating toileting is a nightmare he needs to be prompted to pee it takes him ages to have one , showering he hates I am his only carer we have no help whatsoevet SW have him allocated but have not been in contact no resources altho I have called them they say they will get back there is no early on set support groups in our area we can go to I am at the stage I could run altho I wont I get angry at times and have raised my voice I know I shouldnt and feel awfull when I have he cannot help how he is I looked after his mum even when I was working she had Alz too died last year she was in CH past 4 years but I seemed to have more patience with her ...I at times feel as tho I am outside looking in at myself cant go out on my own no one to care for OH even for an hour I feel I am in limbo

Hi @archiebald I am sorry that you find yourself in this position and I am glad that you have found Talking Point as it is a really good place to come to for help and advice or just a good rant. It has helped me a great deal with my dad.

You sound as if you are really fed up and believe me you are not alone. If you wait a while or come back a bit later you will get some helpful replies from others who know more about getting help. I am still caring for dad on my own but he is still relatively easy to cope with so I have not had to search for help yet.

Caring for a partner, especially at such a young age must be hard. My dad is 88 and also has cancer so my work is cut out but I think it would be worse if it were my husband.

You sound like you have been doing a great job but perhaps it is time to get some help.

Don't feel guilty about getting cross, we are only human and we all do the best we can in very difficult circumstances.
 

marionq

Registered User
Apr 24, 2013
6,449
0
Scotland
I am indeed sorry you are in this situation so young. My husband has Alz too and it is soul destroying but he is 86 while you are both so young.

Getting some time to yourself is essential and so I am disappointed that SS are not yet involved. Has he any siblings or good friends who would give you a break?
 

AliceA

Registered User
May 27, 2016
2,911
0
Oh, dear, you really are having a double whammy. Try and get some help. I too cannot leave my husband so I do empathise. Perhaps a needs assessment by social services will keep you on the radar. Please keep posting.
 

70smand

Registered User
Dec 4, 2011
269
0
Essex
I think it must be so hard to be patient when you are caring for your partner. I witnessed this when my mum cared for my dad. She had always been the most patient and practical person but seem to lose the plot when caring for dad. I think it has a lot with losing her partner and best friend.
Dad would never accept a carer or the fact that he needed help so my mum didn’t get a break. We did try sitters but they just made him angry, but he was ok with me.
In the end I used to take dad out to give mum a break and we found that he quite enjoyed the gym and a rehab class at the ymca. Dad was 70 and quite physically fit and we found a ‘companion’ who was a few years younger who took dad to the gym and he thought of him as a friend and not a carer.
Maybe you could try that, or does he have any friends or family who would be willing to take him out each week for a couple of hours? I think we got the companions number from either Alzheimer’s society or age concern, although I realise your husband is younger. Would there be any dementia cafes or meet ups you could try, as there might be someone who could give you some advice and suggestions, even though they don’t have specific ‘young onset’ groups there may be a chance you could find younger people attend. I know there are holidays designed with people with dementia in mind, where there are carers available to help. Best wishes, and well done x
 

Philbo

Registered User
Feb 28, 2017
853
0
Kent
Hi I am new to the forum hope I am using it correctly, I am full time carer to my hubby had to take early retirement last Dec .He was diagnosed with early on set Alz 2015 age 57 our lives like others changed from that day the decline has been rapid the past two years he is at the stage he needs to be prompted when eating toileting is a nightmare he needs to be prompted to pee it takes him ages to have one , showering he hates I am his only carer we have no help whatsoevet SW have him allocated but have not been in contact no resources altho I have called them they say they will get back there is no early on set support groups in our area we can go to I am at the stage I could run altho I wont I get angry at times and have raised my voice I know I shouldnt and feel awfull when I have he cannot help how he is I looked after his mum even when I was working she had Alz too died last year she was in CH past 4 years but I seemed to have more patience with her ...I at times feel as tho I am outside looking in at myself cant go out on my own no one to care for OH even for an hour I feel I am in limbo


Hi and welcome to the forum.

You don't indicate what part of the UK you reside in, so maybe you'd consider giving a rough location, so other TP members living in the same area could share possible avenues of support?

My wife was just 63 when diagnosed with FTD in Jan 2014. Much of the support I have been able to get has been as a result of recommendations from others, plus searching online.

After initially naively thinking that "someone will be along in a minute to help", I heard about a local dementia coffee morning, run by volunteers once a month at a local hotel. So my wife and I ventured along and although she didn't get an awful lot out of it (her speech and self awareness were affected even in the early stages), I found it useful talking to other carers there.

People were keen to recommend a couple of local carer support organisations and I came away armed with loads of pamphlets. From there I contacted Crossroads Care, Kent and they eventually sent round a really nice chap, who was our area coordinator. He spend several hours chatting to us and provided a lot of useful information, signposting various organisations. He also put us on their waiting list for a free respite visit (3 hours, once a week). After around 9 months, we were allocated someone and she has been visiting every Monday afternoon for around 18 months.

I have gradually gleaned more information and currently, as well as the Monday afternoon respite visit, my wife attends a local dementia activity morning (costs £40 a month) and goes to a day centre once a week - run by the NHS mental health trust. This was arranged through our LA adult social care team and costs around £36 a day plus £5 for hot food (we are self funding).

A good place to start (forgive me if you've already gone down this route) is the Age UK's "Find Services Near You" facility - https://www.ageuk.org.uk/services/in-your-area/

Hope this helps.

Kind regards
Phil
 

archiebald

Registered User
Jan 12, 2016
44
0
Hi @archiebald I am sorry that you find yourself in this position and I am glad that you have found Talking Point as it is a really good place to come to for help and advice or just a good rant. It has helped me a great deal with my dad.

You sound as if you are really fed up and believe me you are not alone. If you wait a while or come back a bit later you will get some helpful replies from others who know more about getting help. I am still caring for dad on my own but he is still relatively easy to cope with so I have not had to search for help yet.

Caring for a partner, especially at such a young age must be hard. My dad is 88 and also has cancer so my work is cut out but I think it would be worse if it were my husband.

You sound like you have been doing a great job but perhaps it is time to get some help.

Don't feel guilty about getting cross, we are only human and we all do the best we can in very difficult circumstances.
Hi Duggies Girl thank you for your understanding and kind words I cried myself to sleep last nite at least I know I still have feelings and helps "get it out " I will just have to wait and see what outcome is with SW we do go out most days for walks he likes that we were always so fit done most things together he cant get out what he wants to say its there in his head just cant tell you what it is he has recently forgotten my name but he still says he loves me (I wouldnt ) I think because I cared for his mum I know whats ahead thats the killer .Take care x
 

archiebald

Registered User
Jan 12, 2016
44
0
I am indeed sorry you are in this situation so young. My husband has Alz too and it is soul destroying but he is 86 while you are both so young.

Getting some time to yourself is essential and so I am disappointed that SS are not yet involved. Has he any siblings or good friends who would give you a break?
Hi Marionq..I could ask lots of friends, we have one daughter she has her own health issues and works but helps if I ask if I need my haircut but the big issue is he needs toileted so its not suitable for friends my daughter does it but I know she feels uneasy with it I will wait and see if SS get back to me but again I know before we get assesed we would gave to pay for befriender and thats £15 an hour I dont work now no pension till Im 66 so what we have I need to live off anyway see what happens thank you for your concern it helps to get it out even good friends dont want to listen to moaning ...x
 

archiebald

Registered User
Jan 12, 2016
44
0
I think it must be so hard to be patient when you are caring for your partner. I witnessed this when my mum cared for my dad. She had always been the most patient and practical person but seem to lose the plot when caring for dad. I think it has a lot with losing her partner and best friend.
Dad would never accept a carer or the fact that he needed help so my mum didn’t get a break. We did try sitters but they just made him angry, but he was ok with me.
In the end I used to take dad out to give mum a break and we found that he quite enjoyed the gym and a rehab class at the ymca. Dad was 70 and quite physically fit and we found a ‘companion’ who was a few years younger who took dad to the gym and he thought of him as a friend and not a carer.
Maybe you could try that, or does he have any friends or family who would be willing to take him out each week for a couple of hours? I think we got the companions number from either Alzheimer’s society or age concern, although I realise your husband is younger. Would there be any dementia cafes or meet ups you could try, as there might be someone who could give you some advice and suggestions, even though they don’t have specific ‘young onset’ groups there may be a chance you could find younger people attend. I know there are holidays designed with people with dementia in mind, where there are carers available to help. Best wishes, and well done x
Hi 70smand Thank you for your kind reply we have been to couple dementia cafes but they are very few and far between one of which has veen stopped due to lack of attendees we are in North Lanarkshire Glasgow area I have attended Dementia Support group they gave me the info on cafes and admitted no support groups for Johns age group near us I dont have a pension at present 4 years to go for that I do know when we do get assessed by SS we will have to pay for someone to come take J out or whatever that I would gladly do but we still have to pay bills ect hopefully some kind of resolution will transpire keep you posted ..take care
 

archiebald

Registered User
Jan 12, 2016
44
0
Hi and welcome to the forum.

You don't indicate what part of the UK you reside in, so maybe you'd consider giving a rough location, so other TP members living in the same area could share possible avenues of support?

My wife was just 63 when diagnosed with FTD in Jan 2014. Much of the support I have been able to get has been as a result of recommendations from others, plus searching online.

After initially naively thinking that "someone will be along in a minute to help", I heard about a local dementia coffee morning, run by volunteers once a month at a local hotel. So my wife and I ventured along and although she didn't get an awful lot out of it (her speech and self awareness were affected even in the early stages), I found it useful talking to other carers there.

People were keen to recommend a couple of local carer support organisations and I came away armed with loads of pamphlets. From there I contacted Crossroads Care, Kent and they eventually sent round a really nice chap, who was our area coordinator. He spend several hours chatting to us and provided a lot of useful information, signposting various organisations. He also put us on their waiting list for a free respite visit (3 hours, once a week). After around 9 months, we were allocated someone and she has been visiting every Monday afternoon for around 18 months.

I have gradually gleaned more information and currently, as well as the Monday afternoon respite visit, my wife attends a local dementia activity morning (costs £40 a month) and goes to a day centre once a week - run by the NHS mental health trust. This was arranged through our LA adult social care team and costs around £36 a day plus £5 for hot food (we are self funding).

A good place to start (forgive me if you've already gone down this route) is the Age UK's "Find Services Near You" facility - https://www.ageuk.org.uk/services/in-your-area/

Hope this helps.

Kind regards
Phil
Hi Phil like you I know we will be self funding we are in Scotland North Lanarkshire area of Glasgow you mentioned you got 3 hours free respite one day a week that would be bliss !! Like your wife my hubbys speech affected early on he needs help toileting and with his personal hygiene dressing showering etc.. we walk a lot he likes getting out and I took him to couple dementia cafes once month few times but they were outwith our area but I enjoyed the company we have friends they have offered to take him for couple hours but then they forget he needs help toileting so thats not aporopriate I will just have to see how things go once Ss contact me thank you for your helpfull info ..take care
 

archiebald

Registered User
Jan 12, 2016
44
0
Hi Phil like you I know we will be self funding we are in Scotland North Lanarkshire area of Glasgow you mentioned you got 3 hours free respite one day a week that would be bliss !! Like your wife my hubbys speech affected early on he needs help toileting and with his personal hygiene dressing showering etc.. we walk a lot he likes getting out and I took him to couple dementia cafes once month few times but they were outwith our area but I enjoyed the company we have friends they have offered to take him for couple hours but then they forget he needs help toileting so thats not aporopriate I will just have to see how things go once Ss contact me thank you for your helpfull info ..take care
 

petals

Registered User
Jan 20, 2012
16
0
Hi I am new to the forum hope I am using it correctly, I am full time carer to my hubby had to take early retirement last Dec .He was diagnosed with early on set Alz 2015 age 57 our lives like others changed from that day the decline has been rapid the past two years he is at the stage he needs to be prompted when eating toileting is a nightmare he needs to be prompted to pee it takes him ages to have one , showering he hates I am his only carer we have no help whatsoevet SW have him allocated but have not been in contact no resources altho I have called them they say they will get back there is no early on set support groups in our area we can go to I am at the stage I could run altho I wont I get angry at times and have raised my voice I know I shouldnt and feel awfull when I have he cannot help how he is I looked after his mum even when I was working she had Alz too died last year she was in CH past 4 years but I seemed to have more patience with her ...I at times feel as tho I am outside looking in at myself cant go out on my own no one to care for OH even for an hour I feel I am in limbo
 

petals

Registered User
Jan 20, 2012
16
0
I am so sorry to hear about your challenge. This is a good place for you to share your feelings as you will meet people who are going through the same situation. I found this forum very helpful 7 years ago when my mother was ill with dementia and the situation was made worse by the fall out with the siblings. I never thought I was going to come out of this nightmare but the support from the members was so helpful. Who else could I have talked to who was in the same situation. Please continue to open up to the group and do not feel guilty if you get frustrated as these are normal feelings.
 

archiebald

Registered User
Jan 12, 2016
44
0
Hi Petals thank you for your kind words do you still care for your mum , today was a bit better got a lot off my chest with help of you lovely people on this forum ...my hubby in bed I was never an early bed person but think I should really try to be lets hope we get a good day tomorrow ..x
 

Banabarama

Registered User
Dec 28, 2018
62
0
Sussex
Hi Archibald. Wishing you a better day tomorrow. The toilet needs must be so hard. It’s my personal dread (other than violence) but I fear it may not be too far down the road. I know what you mean about bedtime but I guess we can gradually train ourselves towards an earlier night. Might be easier to do now than in the light months. Were a very long way from you but again finding support is hard. There are groups further afield but with me working and with taxis costing around £65 each way have rather guiltily abandoned that idea. I also know what you mean about friends not really wanting to listen to moaning - or at least not for long! Also the advice you get from kind people who care for you and think they understand your situation but really don’t - can’t - because fortunately they have not experienced similar - cann make things feel worse. I have taken a lot of comfort from reading articles in this forum in the past few weeks and hope you will too. Sleep well.
 

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