Feeling trapped

mummydash

New member
Feb 28, 2019
1
Im 52 years old and my 56 year old husband was last month diagnosed with early onset Alzheimers. I think we are at least 3 years into the disease as he's been forgetful, confused and incredibly frustrating for me to live with for several years now. I suffered a large spinal injury two years ago and was in hospital for three weeks and he barely coped then and I was fortunate my friends rallied to look after my children during the critical time I was in hospital. Once home I had to force myself back into action as mother, cleaner, taxi driver, cook and general bottle washer as he was incapable of doing much. Things are much worse now with him and sadly if he didn't have the disease Id probably leave him as he isn't really much of a husband to me, just the biological father to my children. I know if I left that would upset my children and leave him utterly floundering so Im kind of trapped here. Im the only person I know of my age who is caring for a husband, not a parent, so Im feeling a little lost myself. He was prescribed Donepezil which he took for a month but it didn't agree with him (stomach cramps & blood in stools) so on the orders of the GP he stopped taking it. Nothing has been prescribed in its place, which doesn't seem to bother him, and he hasn't an appointment to see anyone at his memory clinic until June. Should I be pushing myself for something being prescribed for him? Do other options exist and have people found they helped their loved ones etc to be less confused and more obliging?
 

karaokePete

Registered User
Jul 23, 2017
5,063
N Ireland
Hello @mummydash, you are welcome here and I hope you find the forum to be a friendly and supportive place.

Unfortunately what you describe seems all too common. I even feel much of your frustration myself. My wife was also early onset dementia, although a bit older that you and your husband at the time of her diagnosis.

My wife was prescribed both Donepezil and Memantine for her Alzheimer’s and, luckily tolerates both. I have seen other medications mentioned on the forum so, maybe, others will be able to comment on the meds for you.

Beyond that, I hope you have time to take a good look around the site as it is a goldmine for information. When I first joined I read old threads for information but then found the AS Publications list and the page where a post code search can be done to check for support services in ones own area. If you are interested in these, clicking the following links will take you there

https://www.alzheimers.org.uk/get-support/publications-factsheets-full-list

https://www.alzheimers.org.uk/find-support-near-you

You will see that there are Factsheets that will help with things like getting care needs assessments, deciding the level of care required and sorting out useful things like Wills, Power of Attorney etc.

Now that you have found us I hope you will keep posting as the membership has vast collective knowledge and experience.
 

Grannie G

Volunteer Moderator
Apr 3, 2006
70,333
Kent
I`m so sorry to read your post @mummydash.

It`s bad enough you are both so young and in an unsatisfactory relationship without the additional burden of totally inadequate support.

I wish I had something wise and helpful to offer.

All I can say is keep asking for help from your doctors and social services. I know help is really hard to get but a gentle nudge to all concerned will keep you on their books. If you continue to soldier on without reminding the care providers you are in need of help and support you will be forgotten.

I hope at least you will feel supported here on the forum.
 

Dosey

Registered User
Nov 27, 2017
96
So sorry to read your post mummydash
My OH was diagnosed at 55 with early onset Alzheimer's too. Like you we believe it was going on for a few years before this.
It is so hard when you lose the person you love to this cruel disease. My OH is now in a CH , went in 2nd April this year, he turned 62 on the 11th of this month.
He did take donezepil for 5 years before changing to Memantine. Don't know if these drugs really made any difference. OH did struggle giving up his work (gas engineer) as it was unsafe for him to continue. There doesn't seem to be much support out there for younger people with dementia.
We lived as best as we could for 7 years, but the last 2 years were really difficult, like looking after a baby.
You should contact Social services and ask for an assessment of needs. This will get you in the loop and they can assist in getting help, financial assistance etc.
Unfortunately this cruel disease only gets worse, sorry can't give you any hope. I found trying to accept the situation and not take any of the cruel remarks or outbursts to heart helped, although not all the time.
You will get plenty of support and advice on here so keep posting.
Sending hugs .
Rose
 

wheresthepony

Registered User
Sep 13, 2015
11
Hi @mummydash I know exactly how you feel. My husband was diagnosed in 2015 at age of 51 when I was 41. We had two young children and by the time you get diagnosed.you are already at the limits of your patience due to irrational behaviour which, as you state, if it wasn't for the diagnosis would cause you to consider to leave. Even though you can rationalise in your head that they are not behaving like this deliberately or with malice the result is the same - you are exhausted and still have to deal with it all. I find I am full of compassion when I am out of the house but as soon as I return I just feel mentally exhausted. The other thing I find tough is that all my friends are now starting to get their life back as children become independent and are reconnecting and finding time and energy to go out more as couples just as my life is starting to get smaller and smaller and freedom curtailed. It feels like the scene in star wars with all the walls moving in. I don't want to be bitter because I know we still have a long road ahead of us and my kids are only 11&9 - but they are my priority not OH. I hope I don't come across as unfeeling towards him, I care deeply but this is so tough
 

Guzelle

Registered User
Aug 27, 2016
417
Sheffield
Hello @mummydash sorry to hear about your husband. My husband is 3 years after diagnosis but 7 years since his personality and behaviour changed.

My husband was given mementine 3 years ago and he was a lot better for about 6 months gradually getting worse over time. I would ask if he can try it. Anything is worth a try. My husband is a lot older than yours but I am 60 years old and see my friends going on cruises which I had planned for my 60th birthday but he wasn’t up to it. My daughter is 36 but it must be so much harder having younger children but hopefully they will be able to help you a bit. Keep posting and let us know how you are getting on.
 

Antipat

Registered User
May 20, 2019
16
Im 52 years old and my 56 year old husband was last month diagnosed with early onset Alzheimers. I think we are at least 3 years into the disease as he's been forgetful, confused and incredibly frustrating for me to live with for several years now. I suffered a large spinal injury two years ago and was in hospital for three weeks and he barely coped then and I was fortunate my friends rallied to look after my children during the critical time I was in hospital. Once home I had to force myself back into action as mother, cleaner, taxi driver, cook and general bottle washer as he was incapable of doing much. Things are much worse now with him and sadly if he didn't have the disease Id probably leave him as he isn't really much of a husband to me, just the biological father to my children. I know if I left that would upset my children and leave him utterly floundering so Im kind of trapped here. Im the only person I know of my age who is caring for a husband, not a parent, so Im feeling a little lost myself. He was prescribed Donepezil which he took for a month but it didn't agree with him (stomach cramps & blood in stools) so on the orders of the GP he stopped taking it. Nothing has been prescribed in its place, which doesn't seem to bother him, and he hasn't an appointment to see anyone at his memory clinic until June. Should I be pushing myself for something being prescribed for him? Do other options exist and have people found they helped their loved ones etc to be less confused and more obliging?
 

Antipat

Registered User
May 20, 2019
16
I was a bit older than you when my husband started with his dementia... and the one thing I wish I had done was look into the help available to the care givers. I was such a hero???? I thought I could handle it . I even drove us to Texas with a fifth wheel trailer, that I could not back up... But now a couple of years later I am learning that I can't do it much longer...
I am not able to leave him alone now … so I am also trapped... and there are days that he follows me everywhere, including the bathroom...
Not sure where you live, but I get respite care up to 3 days of the week for a few hours a day . It is free. Here.. Manitoba...
My heart goes out to you... it is a hard job to be care giver when the children are grown.. Must be very hard when they are you... Good luck
 

Teddy1960

Registered User
Oct 24, 2018
52
Im 52 years old and my 56 year old husband was last month diagnosed with early onset Alzheimers. I think we are at least 3 years into the disease as he's been forgetful, confused and incredibly frustrating for me to live with for several years now. I suffered a large spinal injury two years ago and was in hospital for three weeks and he barely coped then and I was fortunate my friends rallied to look after my children during the critical time I was in hospital. Once home I had to force myself back into action as mother, cleaner, taxi driver, cook and general bottle washer as he was incapable of doing much. Things are much worse now with him and sadly if he didn't have the disease Id probably leave him as he isn't really much of a husband to me, just the biological father to my children. I know if I left that would upset my children and leave him utterly floundering so Im kind of trapped here. Im the only person I know of my age who is caring for a husband, not a parent, so Im feeling a little lost myself. He was prescribed Donepezil which he took for a month but it didn't agree with him (stomach cramps & blood in stools) so on the orders of the GP he stopped taking it. Nothing has been prescribed in its place, which doesn't seem to bother him, and he hasn't an appointment to see anyone at his memory clinic until June. Should I be pushing myself for something being prescribed for him? Do other options exist and have people found they helped their loved ones etc to be less confused and more obliging?
Im 52 years old and my 56 year old husband was last month diagnosed with early onset Alzheimers. I think we are at least 3 years into the disease as he's been forgetful, confused and incredibly frustrating for me to live with for several years now. I suffered a large spinal injury two years ago and was in hospital for three weeks and he barely coped then and I was fortunate my friends rallied to look after my children during the critical time I was in hospital. Once home I had to force myself back into action as mother, cleaner, taxi driver, cook and general bottle washer as he was incapable of doing much. Things are much worse now with him and sadly if he didn't have the disease Id probably leave him as he isn't really much of a husband to me, just the biological father to my children. I know if I left that would upset my children and leave him utterly floundering so Im kind of trapped here. Im the only person I know of my age who is caring for a husband, not a parent, so Im feeling a little lost myself. He was prescribed Donepezil which he took for a month but it didn't agree with him (stomach cramps & blood in stools) so on the orders of the GP he stopped taking it. Nothing has been prescribed in its place, which doesn't seem to bother him, and he hasn't an appointment to see anyone at his memory clinic until June. Should I be pushing myself for something being prescribed for him? Do other options exist and have people found they helped their loved ones etc to be less confused and more obliging?
 

Teddy1960

Registered User
Oct 24, 2018
52
Omg feel exactly the same. We got the diagnosis last November and like you my husband is young 57 I am 58 . He started with symptoms around 3 years ago .

I am still working at the moment and want to carry on as it's the only thing I ha e left . I sometimes feel selfish but the way he is deteriorating I am going to need to build a new life for myself..... does that sound selfish. I feel for you I really do
 

KeddyL

Registered User
Jun 8, 2014
23
Hello,

I'm messaging from a daughter point of view. My mum wad diagnosed with dementia at 47 when I was 17.. my dad 49. My mum died in January this year aged 57. My dad looked after my mum to the very end when she took her final breath with me, my dad and 2 brothers around her. Although I dont think my dad would of wanted it any other way, as his daughter I wanted nothing more than for him to be happy and healthy. Afterall I needed atleast 1 parent around. My brothers and I wouldnt of judged dad or been angry with him had she of ended up going into a care home or if he required any extra support.

Be kind to yourself. You only have one life. If you can talk to your children, maybe that would be a good start? I'm sure they wouldn't like you to feel the way you do. My dad done dad an amazing job, I'm sure you are too. I'm sorry you feel trapped. Xx
 

Had E Nough

New member
Oct 25, 2019
1
Hi @mummydash I know exactly how you feel. My husband was diagnosed in 2015 at age of 51 when I was 41. We had two young children and by the time you get diagnosed.you are already at the limits of your patience due to irrational behaviour which, as you state, if it wasn't for the diagnosis would cause you to consider to leave. Even though you can rationalise in your head that they are not behaving like this deliberately or with malice the result is the same - you are exhausted and still have to deal with it all. I find I am full of compassion when I am out of the house but as soon as I return I just feel mentally exhausted. The other thing I find tough is that all my friends are now starting to get their life back as children become independent and are reconnecting and finding time and energy to go out more as couples just as my life is starting to get smaller and smaller and freedom curtailed. It feels like the scene in star wars with all the walls moving in. I don't want to be bitter because I know we still have a long road ahead of us and my kids are only 11&9 - but they are my priority not OH. I hope I don't come across as unfeeling towards him, I care deeply but this is so tough
Hi I am in the same position, my husband was diagnosed at 58. I knew something was wrong about 4 years previously but as he was out working all the time and I had a home and 3 children plus part time work, I never gave it much thought until he had to leave his job and shortly after that went missing in the car.

Unfortunately, during those 4 years of not knowing something was wrong, I found him very awkward and unhelpful and fell out of love. I am now stuck in a loveless marriage with a husband who is doubly incontinent, follows me around the house all day, even if i go to the bathroom he waits outside the door. I sleep in a camp bed in the lounge as the bed is always covered in poo and the rooms smells. I work part-time and have 3 teenage boys. I am at the end of my tether. Social workers, family support, child services, dementia nurses all make the right sounds, but nothing is done.

My home is not a home any more and we are not a family, my boys stay in their rooms all the time to keep out of the way, they dont bring friends back, and they all hate the situation and want him to go in a home, as do I. That sounds very selfish but surely interaction with anyone would be better than him sitting in the house all day on his own, no one talking. He alternates between following me around or spending weeks in the bedroom or sitting on the stairs, so noone can get past.

I have just turned 51 and feel like my life has shrunk, my children are 13, 15 and 19 and dont need me as much, now i feel instead of having my own life, i am expected to look after a toddler/man that i do not love, do not want to be with am completely wore out by.

If I leave the house I feel guilty, if I stay in i hate it.
 

Grannie G

Volunteer Moderator
Apr 3, 2006
70,333
Kent
I feel for you @Had E Nough. It`s bad enough for those of us with older partners but when you`re relatively young and have dependent children at home it`s even more difficult.

I don`t know what to suggest other than try to get as much help as available. If you could get someone to stay with your husband just to give you some time out, it might help.
Don`t feel guilty if you leave the house. You are entitled to some space.

Here is a link where you might be able to find help and local support.

https://www.alzheimers.org.uk/get-support

Social workers, family support, child services, dementia nurses all make the right sounds, but nothing is done.
I`m afraid they need pushing and reminding where you are. They are all overworked and over subscribed and it`s easy to overlook those who are less demanding.
 

lis66

Registered User
Aug 7, 2015
278
Sending (((hugs ))) I feel for you I really do I'm carer for my mum I'm 53 and it's your husband which must be so much worse I can't begin to imagine how you are feeling but do know some of what you are going through sending you strength and support , please keep posting ,DTP has been a lifeline for me councilling has also helped a bit. Xxx
 

Idontexist

New member
Dec 3, 2019
3
I am 41, my wife is 42, she had meningitis back in 2000, we have been married for 18 years, she was diagnosed with front temporal dementia back in 2017, I also have a teenager with intellectual disability, and have a daughter who is assisting with the duties (she is nearly 18).

for me, I feel robbed, robbed of my wife her identity, I feel robbed of the identity a wife can provide, and just exhausted from the people that just don't exist, and feeling really lonely. I don't know what to do, and I know that when the daughter goes, I won't know anyone but my problems, and will want to dump my dependants on the doorstep of somewhere that will allow me to walk away, and provide without fighting the system to help on what is purely just a sad state of affairs.

this is the first forum I have joined, I am not a local to the UK (AU) and wondering what to do, I feel robbed of a life, and feel even now to stick around I will fade into nothing like my wife is.. this sucks! any advice on how to jump ship?
 

Idontexist

New member
Dec 3, 2019
3
Hi I am in the same position, my husband was diagnosed at 58. I knew something was wrong about 4 years previously but as he was out working all the time and I had a home and 3 children plus part time work, I never gave it much thought until he had to leave his job and shortly after that went missing in the car.

Unfortunately, during those 4 years of not knowing something was wrong, I found him very awkward and unhelpful and fell out of love. I am now stuck in a loveless marriage with a husband who is doubly incontinent, follows me around the house all day, even if i go to the bathroom he waits outside the door. I sleep in a camp bed in the lounge as the bed is always covered in poo and the rooms smells. I work part-time and have 3 teenage boys. I am at the end of my tether. Social workers, family support, child services, dementia nurses all make the right sounds, but nothing is done.

My home is not a home any more and we are not a family, my boys stay in their rooms all the time to keep out of the way, they dont bring friends back, and they all hate the situation and want him to go in a home, as do I. That sounds very selfish but surely interaction with anyone would be better than him sitting in the house all day on his own, no one talking. He alternates between following me around or spending weeks in the bedroom or sitting on the stairs, so noone can get past.

I have just turned 51 and feel like my life has shrunk, my children are 13, 15 and 19 and dont need me as much, now i feel instead of having my own life, i am expected to look after a toddler/man that i do not love, do not want to be with am completely wore out by.

If I leave the house I feel guilty, if I stay in i hate it.
you are in the same boat as me, mines purely just fading away everything that I loved is different, I hate it, diagnosed at 38 (F) and fading fast. I love who she was, but now she just sleeps and is confused, incontinent, the lights and switches to sex that held things together have all but gone. if I was 20 years on it would be better, I could feel I could just wait to die, but I feel too young to fade way, this sucks.
 

kindred

Registered User
Apr 8, 2018
2,338
you are in the same boat as me, mines purely just fading away everything that I loved is different, I hate it, diagnosed at 38 (F) and fading fast. I love who she was, but now she just sleeps and is confused, incontinent, the lights and switches to sex that held things together have all but gone. if I was 20 years on it would be better, I could feel I could just wait to die, but I feel too young to fade way, this sucks.
It certainly does. All sympathy. Do you really want to jump ship? What is the system in your country? Here, no one has to care for another but it is a hard path to extricate yourself. What are the possibilities?
warmest, Kindred.
 

nellbelles

Volunteer Host
Nov 6, 2008
8,549
leicester
Hello @Idontexist and welcome to DTP I’m glad you have found the forum and I hope you can gain support here.
I don’t know the system of support your country offers but you obviously can’t carry on as you are..
I have attached a link for you although I don’t know if it will be of help to you
https://www.dementia.org.au/
I hope now you have found the forum you will continue to post
 

Idontexist

New member
Dec 3, 2019
3
It certainly does. All sympathy. Do you really want to jump ship? What is the system in your country? Here, no one has to care for another but it is a hard path to extricate yourself. What are the possibilities?
warmest, Kindred.
In our country we have a new system which is quite good for supporting people with dementia over 65, but is a system which kicks the people who have those under 65 in the shins, dementia people au have been quite good, I think it is more that I am lonely and have no one to talk to myself, even the family of my wife don't really have much to do with it, the system is the only way that I am supported,, and I think that because the house I live in is falling to bits , and that I can't replace things, and am doing so much running around, that it has made so I can't work, is why I feel trapped.. I almost want to put her in the system to keep her goals going, because the system itself will throw money at her, its like the system is a teenager, it throws some crumbs ,that's all you get, and then forgets about you
 

Avis

Registered User
Nov 2, 2019
103
In our country we have a new system which is quite good for supporting people with dementia over 65, but is a system which kicks the people who have those under 65 in the shins, dementia people au have been quite good, I think it is more that I am lonely and have no one to talk to myself, even the family of my wife don't really have much to do with it, the system is the only way that I am supported,, and I think that because the house I live in is falling to bits , and that I can't replace things, and am doing so much running around, that it has made so I can't work, is why I feel trapped.. I almost want to put her in the system to keep her goals going, because the system itself will throw money at her, its like the system is a teenager, it throws some crumbs ,that's all you get, and then forgets about you
I know what you mean about feeling trapped. I am obviously older than you as my person with dementia is 80. I am 70 and when he was in his 60'/70's he was fishing on the barrier reef while I worked to keep us as he had retired and lost most of his money in poor investments. Just when I was looking forward to an enjoyable retirement, he developed MSA and I have spent 10 years nursing him, the last 4 with his dementia. I know it is not his fault but having little money and not being able to do anything, even have a good conversation is incredibly frustrating. Hang in there and I hope you can get some solace from the fact that there are a lot of us hidden away in the same boat. ((((o)))) hugs