What now ?

[wink62]

I’m struggling at the moment with what to do now that my husband has gone into care
I looked after him for 5years with his increasing Alzheimer’s and he’s now living in luxurious care home with one to one care which is costing a fortune
I’m left in our home with hardly any money to live on and feel totally broken
I am tearful and emotional most of the time at 64 I could
Realistically have another 20 years of active life but where do I start!
I’m not a widow so can’t do online dating but would like male friends how do I move on ?
Sorry if this sounds as though I’m wallowing in self pity but I feel lost broken and weak after my ordeal with my husband
And I wonder how many others are in the same situation
Thank goodness for TP

 

[hodge]

I’m struggling at the moment with what to do now that my husband has gone into care
I looked after him for 5years with his increasing Alzheimer’s and he’s now living in luxurious care home with one to one care which is costing a fortune
I’m left in our home with hardly any money to live on and feel totally broken
I am tearful and emotional most of the time at 64 I could
Realistically have another 20 years of active life but where do I start!
I’m not a widow so can’t do online dating but would like male friends how do I move on ?
Sorry if this sounds as though I’m wallowing in self pity but I feel lost broken and weak after my ordeal with my husband
And I wonder how many others are in the same situation
Thank goodness for TP

Dear wink62

I can identify with how you are feeling, although my husband is at home at the moment, I have cared for him for 5 year thus far, and I am a similar age to you, 65, and as you say realistically and hopefully have a lot of years left. My husband is 76 and I feel totally trapped. I am neither single or married so to speak and feel in the middle of no mans land, I yearn to be free to socialise and make new friends, we unfortunately have not had a happy marriage. I feel emotional and tearful on a daily basis, we have no family and therefore little or no support. I am only telling you this to let you know that I know how it is to feel so bereft, you are not alone in your feelings, but if you have any interests, try to join a club, maybe small steps, or could you try some volountary work maybe in a charity shop or even at an Alzheimers Cafe as a support to others in a similar position. This could lead to expaning your circle of contacts and make new friends. If I were free, I know that is the route that I would take.

I hope this helps a little, it is so difficult and I feel for you, but keep posting, you are not alone.

Jane

 

[JaquelineM]

@wink62 , I too can identify with your situation , as my OH has recently gone into care after five years , although I have to say that as well as sadness, my main feeling is of relief. It was very difficult as he was totally unable to understand that there was anything wrong with him , and became increasingly angry and abusive in response to what to him seemed like my intolerable bossiness , when I was trying as tactfully as possible to help when I saw him struggling to manage everyday things for himself. You are certainly not wallowing in self pity , there is bound to be a considerable period of adjustment after such a huge change in your circumstances and it's probably going to take a long time to get used to your new situation . Do try and take things slowly and I'm sure as you start to feel a bit less exhausted and debilitated things will begin to look a little better . As Hodge says there are plenty of things out there to explore when you are ready , a friend of mine was recently talking about U3A . Apparently they have all sorts of interesting things on offer , and I believe it only costs quite a small annual fee to join . I don't know whereabouts you are but I think they must have groups in most areas . Anyway , all the best , I hope you feel better soon .

 

[wink62]

Dear wink62

I can identify with how you are feeling, although my husband is at home at the moment, I have cared for him for 5 year thus far, and I am a similar age to you, 65, and as you say realistically and hopefully have a lot of years left. My husband is 76 and I feel totally trapped. I am neither single or married so to speak and feel in the middle of no mans land, I yearn to be free to socialise and make new friends, we unfortunately have not had a happy marriage. I feel emotional and tearful on a daily basis, we have no family and therefore little or no support. I am only telling you this to let you know that I know how it is to feel so bereft, you are not alone in your feelings, but if you have any interests, try to join a club, maybe small steps, or could you try some volountary work maybe in a charity shop or even at an Alzheimers Cafe as a support to others in a similar position. This could lead to expaning your circle of contacts and make new friends. If I were free, I know that is the route that I would take.

I hope this helps a little, it is so difficult and I feel for you, but keep posting, you are not alone.

Jane

Thank you Jane I feel for you !
I should be feeling better now that I’m free but I just don’t
I’m blessed with family and good friends but I’ve still got a big hole in my life guess it will take time x

@wink62 , I too can identify with your situation , as my OH has recently gone into care after five years , although I have to say that as well as sadness, my main feeling is of relief. It was very difficult as he was totally unable to understand that there was anything wrong with him , and became increasingly angry and abusive in response to what to him seemed like my intolerable bossiness , when I was trying as tactfully as possible to help when I saw him struggling to manage everyday things for himself. You are certainly not wallowing in self pity , there is bound to be a considerable period of adjustment after such a huge change in your circumstances and it's probably going to take a long time to get used to your new situation . Do try and take things slowly and I'm sure as you start to feel a bit less exhausted and debilitated things will begin to look a little better . As Hodge says there are plenty of things out there to explore when you are ready , a friend of mine was recently talking about U3A . Apparently they have all sorts of interesting things on offer , and I believe it only costs quite a small annual fee to join . I don't know whereabouts you are but I think they must have groups in most areas . Anyway , all the best , I hope you feel better soon .

Thank you for your kind reply I’m impatient I know and the answer is one day at a time!

 

[Philbo]

Hi Wink62

I have been caring for my wife for around 5 years (diagnosed 4 years ago) and we are both just 67. She is still at home and I am blessed in that she is such a happy little soul.

Like you and others, the caring role has taken somewhat of a toll on me and though I always try and put on a brave face, deep down I often feel very lonely and sad.

Since her diagnosis, I have managed to build a good social life for us both, by "adopting" a local pub in the town, where we have made some brilliant friends who are very understanding and supportive.

However, though I still have my wife of course, I do get envious when others are talking about their holiday plans, things they've been doing etc. My wife's incontinence has restricted us getting out and about like we always used to do, though I try my best to keep us active.

I also miss the spontaneity we used to enjoy, the conversations, dreams we shared, which have been replaced with me trying to guess what she's said (her speech and cognitive abilities are greatly affected) and the "groundhog day" routines I now experience out of necessity.

I count my blessings though, as far many of you on this forum have far greater issues to cope with but I am finding it harder and harder to see any light at the end of the tunnel.

Regards
Phil

 

[Bunpoots]

I do feel for you @wink62 caught in this horrible limbo. I know you say you can't do online dating, but on the sites I've looked at there is usually a "friendship" option to choose. I don't see why you couldn't find yourself a male friend and be totally honest about the situation you're in. There must be so many people living this half life while trying to care for someone with dementia and it isn't fair, including men who would love some female company.

In my mind this wouldn't make you disloyal, but you have to think of yourself too.

I hope I haven't offended anyone by saying this.

 

[wink62]

Thank you no I’m not offended it’s sound advice and I may well try that when I’m feeling a bit stronger bless you

 

[PalSal]

I’m struggling at the moment with what to do now that my husband has gone into care
I looked after him for 5years with his increasing Alzheimer’s and he’s now living in luxurious care home with one to one care which is costing a fortune
I’m left in our home with hardly any money to live on and feel totally broken
I am tearful and emotional most of the time at 64 I could
Realistically have another 20 years of active life but where do I start!
I’m not a widow so can’t do online dating but would like male friends how do I move on ?
Sorry if this sounds as though I’m wallowing in self pity but I feel lost broken and weak after my ordeal with my husband
And I wonder how many others are in the same situation
Thank goodness for TP

Dear wink62.
You are not alone. We are now 16 years into this process I will be 64 in March and OH 65 in April. I never thought I would make it this long, as a carer or that it would go on this long. Our family home is long gone, now I rent a house, which has been home for almost 1o years. I thought this would be temporary.
I have felt broken during this process, but I try to focus sustaining an life independent from my role as a carer and I must enjoy it my life. I work on being grateful for what I do still have in my life, loving family and understanding friends. I am one of the blessed.
I think the suggestion of joining an on line site under "friendship" is feasible if your husband is now in full time care. There are clearly many of us in this limbo. For me a "friend" in the sense I think you mean, would I fear make be too many demands on my time, as my hubby is still at home with me. So, I rely on my outside activities and interests to get the male attention and to retain my femininity, to feel appreciated, get masculine opinion and perspective. That has worked for me. They are my friends ....nothing more. But it keeps the healthy male perspective in my life which I miss from my hubby....

 

[Caz60]

Hi ,to all who are on this sight and good enough to read and give an opinion.
I am getting to a point where enough is enough.Im tired after broken sleep every night ,yes I can have a nap in the afternoon but I'm looking myself good and proper.
I do get me time ,he has 3 days day care and pickup service which I have just opted for instead of me getting myself and hubby ready ,Its another little help .Having carers in each day at 6 for his shower and it's working out well,he's all ready for bed which lightens my load tremendously.
If they had to stop care for any reason I would be in a mess.
It's just the mental side is wearing me down now ,he has severe cognitive problems ,speech eating drinking washing dressing and walking .I aid him and hold him up going to toilet and upstairs I have to push from behind ,his mobility is very poor .His limbs are stiff because of his Parkinson's and doesn't know how to get into bed ,I'm tired of struggling .
I have a lung condition I am on anti biotics several times throughout the year and a bad back .
I love my hubby but it's killing me and I am considering putting him into care .
He is 71 I am 68 almost and have been caring for him longer than diagnosis 4 years ago .
Around 2010 I feel I have done everything there is to be done in an household plus care and I want to be my normal smiley self,I know it will never be the same but I just want ,to have a bath ,relax ,go for a walk ,browse in the shops just normal things .We dont go on any social events now hes just not well enough and falls to sleep while eating.Its our 50th anniversary this year and he was aware but not for long and it's easier just to let it pass without making a fuss ,Its too upsetting to arrange something and he's not aware so sadly it's best for both of us .
We won't be self funding so I don't know if I'm expected to care for him until they think it's time or I can put my point across that I've had enough,I feel dreadful to be saying this but Lbdementia is so hard to deal with .
I'm sorry for anyone who is in this situation but now I'm feeling like .....take the house please let me live a bit of life before anything more serious befalls me.
Thankyou for reading I'm full of cold and feeling so sorry for myself .xxx

 

[marionq]

Go online and search What's On in your local area. Our GP practice runs a health walk on a Wednesday, there is a rambler group from the local Library on a Tuesday, various dance classes in a community hall, lunch time theatre in Oran Mor in the west end of Glasgow, and so on. Swimming groups are usually very chatty too.

I am not free to do many things but I certainly would if I could. The Internet could come to your rescue without the possibly dodgy route of online dating.

 

[JaquelineM]

Hi ,to all who are on this sight and good enough to read and give an opinion.
I am getting to a point where enough is enough.Im tired after broken sleep every night ,yes I can have a nap in the afternoon but I'm looking myself good and proper.
I do get me time ,he has 3 days day care and pickup service which I have just opted for instead of me getting myself and hubby ready ,Its another little help .Having carers in each day at 6 for his shower and it's working out well,he's all ready for bed which lightens my load tremendously.
If they had to stop care for any reason I would be in a mess.
It's just the mental side is wearing me down now ,he has severe cognitive problems ,speech eating drinking washing dressing and walking .I aid him and hold him up going to toilet and upstairs I have to push from behind ,his mobility is very poor .His limbs are stiff because of his Parkinson's and doesn't know how to get into bed ,I'm tired of struggling .
I have a lung condition I am on anti biotics several times throughout the year and a bad back .
I love my hubby but it's killing me and I am considering putting him into care .
He is 71 I am 68 almost and have been caring for him longer than diagnosis 4 years ago .
Around 2010 I feel I have done everything there is to be done in an household plus care and I want to be my normal smiley self,I know it will never be the same but I just want ,to have a bath ,relax ,go for a walk ,browse in the shops just normal things .We dont go on any social events now hes just not well enough and falls to sleep while eating.Its our 50th anniversary this year and he was aware but not for long and it's easier just to let it pass without making a fuss ,Its too upsetting to arrange something and he's not aware so sadly it's best for both of us .
We won't be self funding so I don't know if I'm expected to care for him until they think it's time or I can put my point across that I've had enough,I feel dreadful to be saying this but Lbdementia is so hard to deal with .
I'm sorry for anyone who is in this situation but now I'm feeling like .....take the house please let me live a bit of life before anything more serious befalls me.

Thankyou for reading I'm full of cold and feeling so sorry for myself .xxx

Hello Caz60, I was in a similar situation to yours back in October , just felt I was heading for a breakdown and simply couldn't cope , as my OH is not self funding I contacted social services ( we already had a social worker as OH had been into respite for a week back in the summer ) and told them I couldn't carry on , and they went into action really quickly and got the ball rolling , as others have said on this site you cannot be forced to be a carer and if you say you are not willing to carry on they will have to do something . Your situation sounds awful and I do sympathise , I would contact social services asap and see what they say , All the best , hope your cold gets better soon , xx

 

[Caz60]

Hello Caz60, I was in a similar situation to yours back in October , just felt I was heading for a breakdown and simply couldn't cope , as my OH is not self funding I contacted social services ( we already had a social worker as OH had been into respite for a week back in the summer ) and told them I couldn't carry on , and they went into action really quickly and got the ball rolling , as others have said on this site you cannot be forced to be a carer and if you say you are not willing to carry on they will have to do something . Your situation sounds awful and I do sympathise , I would contact social services asap and see what they say , All the best , hope your cold gets better soon , xx

Thankyou for your reply,we have an assessment due February so I'm going to put it forward as sad as I feel it's sink or survive time,.love to all xxx

 

[Reman]

Hi ,to all who are on this sight and good enough to read and give an opinion.
I am getting to a point where enough is enough.Im tired after broken sleep every night ,yes I can have a nap in the afternoon but I'm looking myself good and proper.
I do get me time ,he has 3 days day care and pickup service which I have just opted for instead of me getting myself and hubby ready ,Its another little help .Having carers in each day at 6 for his shower and it's working out well,he's all ready for bed which lightens my load tremendously.
If they had to stop care for any reason I would be in a mess.
It's just the mental side is wearing me down now ,he has severe cognitive problems ,speech eating drinking washing dressing and walking .I aid him and hold him up going to toilet and upstairs I have to push from behind ,his mobility is very poor .His limbs are stiff because of his Parkinson's and doesn't know how to get into bed ,I'm tired of struggling .
I have a lung condition I am on anti biotics several times throughout the year and a bad back .
I love my hubby but it's killing me and I am considering putting him into care .
He is 71 I am 68 almost and have been caring for him longer than diagnosis 4 years ago .
Around 2010 I feel I have done everything there is to be done in an household plus care and I want to be my normal smiley self,I know it will never be the same but I just want ,to have a bath ,relax ,go for a walk ,browse in the shops just normal things .We dont go on any social events now hes just not well enough and falls to sleep while eating.Its our 50th anniversary this year and he was aware but not for long and it's easier just to let it pass without making a fuss ,Its too upsetting to arrange something and he's not aware so sadly it's best for both of us .
We won't be self funding so I don't know if I'm expected to care for him until they think it's time or I can put my point across that I've had enough,I feel dreadful to be saying this but Lbdementia is so hard to deal with .
I'm sorry for anyone who is in this situation but now I'm feeling like .....take the house please let me live a bit of life before anything more serious befalls me.
Thankyou for reading I'm full of cold and feeling so sorry for myself .xxx

 

[wink62]

Thankyou for your reply,we have an assessment due February so I'm going to put it forward as sad as I feel it's sink or survive time,.love to all xxx

Hi Caz60
I'm suggesting that you let him go now once I did it I realised that I'd gone on too long on my own and it's made me quite ill
Husband 81 is settled now in a dementia care home where 5 people now do what I did alone for him
It's still hard for me to see him as he is now but I know that I did the right thing for us both
Push social services to find him a full time residential home you've done your best but you know we aren't professional dementia nurses ,we're just caring wives .all the best and remember you are important .x

 

[Grahamstown]

Thank you no I’m not offended it’s sound advice and I may well try that when I’m feeling a bit stronger bless you

Another suggestion when you feel stronger is the U3A (University of the Third Age). It is a wonderful organisation and people say that it has been a lifeline for them. If you have a friend you could go with for a taster that would be helpful. I belong and it is a friendly place with enjoyable activities.

 

[love.dad.but..]

Hi ,to all who are on this sight and good enough to read and give an opinion.
I am getting to a point where enough is enough.Im tired after broken sleep every night ,yes I can have a nap in the afternoon but I'm looking myself good and proper.
I do get me time ,he has 3 days day care and pickup service which I have just opted for instead of me getting myself and hubby ready ,Its another little help .Having carers in each day at 6 for his shower and it's working out well,he's all ready for bed which lightens my load tremendously.
If they had to stop care for any reason I would be in a mess.
It's just the mental side is wearing me down now ,he has severe cognitive problems ,speech eating drinking washing dressing and walking .I aid him and hold him up going to toilet and upstairs I have to push from behind ,his mobility is very poor .His limbs are stiff because of his Parkinson's and doesn't know how to get into bed ,I'm tired of struggling .
I have a lung condition I am on anti biotics several times throughout the year and a bad back .
I love my hubby but it's killing me and I am considering putting him into care .
He is 71 I am 68 almost and have been caring for him longer than diagnosis 4 years ago .
Around 2010 I feel I have done everything there is to be done in an household plus care and I want to be my normal smiley self,I know it will never be the same but I just want ,to have a bath ,relax ,go for a walk ,browse in the shops just normal things .We dont go on any social events now hes just not well enough and falls to sleep while eating.Its our 50th anniversary this year and he was aware but not for long and it's easier just to let it pass without making a fuss ,Its too upsetting to arrange something and he's not aware so sadly it's best for both of us .
We won't be self funding so I don't know if I'm expected to care for him until they think it's time or I can put my point across that I've had enough,I feel dreadful to be saying this but Lbdementia is so hard to deal with .
I'm sorry for anyone who is in this situation but now I'm feeling like .....take the house please let me live a bit of life before anything more serious befalls me.
Thankyou for reading I'm full of cold and feeling so sorry for myself .xxx

You sound so worn out...I cared for dad before his needs became such that 24/7 care home expertise was needed. I always felt it was hard enough to see the decline of a parent and do personal care which I did...but for a partner to witness the decline and be physically and mentally pushed beyond their limits must be totally exhausting...I hope you get the help you need to live a bit of the life you deserve...and that your cold is easing

 

[Caz60]

Hi Caz60
I'm suggesting that you let him go now once I did it I realised that I'd gone on too long on my own and it's made me quite ill
Husband 81 is settled now in a dementia care home where 5 people now do what I did alone for him
It's still hard for me to see him as he is now but I know that I did the right thing for us both
Push social services to find him a full time residential home you've done your best but you know we aren't professional dementia nurses ,we're just caring wives .all the best and remember you are important .x

Hi wink62,
I think you reminded me that a move to care would be better not just for me but for my hubby, he would get hopefully professional care with trained staff .I've done my best I am a caring nature so it came easy to me but ,I've lost myself somewhere mentally and I'm desperate to try and find a way to smile .
I will be seeing the social worker in the next few weeks so there's no change of mind this time,and no extra days at day care or carers visits will help me .Thankyou for being straightforward it really is very helpful to me as most people ,when I ask what they think they say till death do you part and I'm sorry it's not what I want to hear anymore .People on this sight are all amazing and their opinions help you so much ,Thankyou.

 

[Caz60]

You sound so worn out...I cared for dad before his needs became such that 24/7 care home expertise was needed. I always felt it was hard enough to see the decline of a parent and do personal care which I did...but for a partner to witness the decline and be physically and mentally pushed beyond their limits must be totally exhausting...I hope you get the help you need to live a bit of the life you deserve...and that your cold is easing

Love.dad.but,Hi and thankyou for your reply it is important to listen to opinions and then sort yourself out ,I know it's not going to be easy but that's the path I'm taking I am completely sure .
The last few days have pushed me over the edge and I was waiting for a time when I would know ,enough is enough and words from yourself make me realise, that's it.
I too cared for my dad as well as my hubby ,dad was 91 and I was running up and down with both of them ,when I look back a year I don't know how i did it .
Thankyou for your opinion it was very much needed.xx

 

[LadyA]

We have an expression here on Taking point for when you find yourself in this position. Not widowed, but yet, your spouse is no longer there, because of their Dementia. You are a "midow".

I also looked after my late husband until it (and he!) nearly killed me. I had been determined to keep him at home. However, he became aggressive, and resistant to personal care. Finally, he went to first Respite (emergency respite, four times within six months!) and then into full time care. It was the very best thing I could have done for him! He settled in, and positively thrived! He loved having male care assistants to help him, and never got aggressive with them. He loved the dining room, set up like a fine restaurant, and so ate much better. He took his medication regularly, like a lamb from a uniformed nurse. He gained weight, and his gentle, sweet personality returned. He had the space to walk around the wide, flat corridors in safety (he walked for hours!), with no door straddles to trip him. He had, most importantly, the stimulation of company other than just mine, and activity and things going on. He had physio at least twice a week to maintain his mobility as long as possible.

You see, we fight against residential care for our loved ones, but realistically, with the best will in the world, there comes a point when there is no way that we, on our own, can provide the level of care that a fully staffed, fully equipped nursing home can. Granted, I was very lucky in that my husband's nursing home was, although an old building and a bit shabby in places, top class in terms of the care provided (although it was one of the cheaper homes locally).

 

[Caz60]

We have an expression here on Taking point for when you find yourself in this position. Not widowed, but yet, your spouse is no longer there, because of their Dementia. You are a "midow".

I also looked after my late husband until it (and he!) nearly killed me. I had been determined to keep him at home. However, he became aggressive, and resistant to personal care. Finally, he went to first Respite (emergency respite, four times within six months!) and then into full time care. It was the very best thing I could have done for him! He settled in, and positively thrived! He loved having male care assistants to help him, and never got aggressive with them. He loved the dining room, set up like a fine restaurant, and so ate much better. He took his medication regularly, like a lamb from a uniformed nurse. He gained weight, and his gentle, sweet personality returned. He had the space to walk around the wide, flat corridors in safety (he walked for hours!), with no door straddles to trip him. He had, most importantly, the stimulation of company other than just mine, and activity and things going on. He had physio at least twice a week to maintain his mobility as long as possible.

You see, we fight against residential care for our loved ones, but realistically, with the best will in the world, there comes a point when there is no way that we, on our own, can provide the level of care that a fully staffed, fully equipped nursing home can. Granted, I was very lucky in that my husband's nursing home was, although an old building and a bit shabby in places, top class in terms of the care provided (although it was one of the cheaper homes locally).

4
Lady, Hi ,you have hit on the right points I must admit my hubby also would be better as of now with care home stimulation with carefully choosing I'm hoping it will be good for him.......
I will be going in this direction and will keep posting hopefully knowledge for others .
Thankyou ,xx