Feeling alone

[Rosie2]

This is the first time I have ever joined something like this but tonight I feel so alone. My husband has Alzheimer's and he has always been the person I have turned to. I'm losing him to the illness and tonight I can't bear it. I hate feeling so helpless.

TP is wonderful because everyone understands these feelings. To know that it is okay to feel this way relieves some of the guilt.
For me the worst times are the early hours of the morning when the opportunity is there for sleep (OH sleeping peacefully) and try as I might sleep refuses to come.
The old brain will not switch off. Fear, sadness, all of these feelings take over.
TP will help. It has certainly helped me. I have been browsing for a long time and only recently gained courage to start posting.
So welcome and stay with us. T/P understands they really do.

 

[truth24]

Welcome. I agree with all that has been said. It's sad to know there are so many of us in this position but it's good to be able to share with others who understand what you are going through. I think the loneliness/isolation and lack of comfort/understanding are the worst bits. We all need a big hug from time to time.

 

[hodge]

i feel the same

This is the first time I have ever joined something like this but tonight I feel so alone. My husband has Alzheimer's and he has always been the person I have turned to. I'm losing him to the illness and tonight I can't bear it. I hate feeling so helpless.[/QUOTE

Hello Trisha,

I have just read your post, and I know exactly how you feel. My husband was diagnosed with AD just over a year ago. We have no children and no friends. The few friends I thought we had have dropped away. Don't want to get involved I presume. My husband has always been my best friend and confidante so I am bereft. I cry every day, where he can't see me, and I understand the feeling of loneliness, fear and sadness that it there constantly. The feeling of isolation is sometimes overwhelming, but if you can reach out to others, do try. When I am in desperate need for someone to talk to, I telephone my local Alzheimers centre, and there is always someone who till talk you through a bad time, with kindness and understanding, they have helped me enormously. They even telephoned my husband's consultant as they felt we weren't getting the support we should. Within two days a nurse from the memory clinic came out to see us and they are going to return within a week or two with an occupational therapist to try and work with my husband to find some sort of hobby to occupy him and make use of his mind, so ring your local Alzheimers support group to see what help is available to you.

I am thinking of you and everyone else who is trying to cope with this dreadful illness and all the heartbreak it brings. xxxxxxxxxxx

 

[NanLorac]

Sorry you are feeling so lonely Hodge as I posted earlier, please phone your local Alzheiner's office and ask them about Memory Cafe's and carer meetings.

I spent months crying in the toilet were my husband could not hear me because of the fan running. Please believe me it was awful that first year but what I learned on TP is to take it a day at a time. Someone said, to go to bed after a bad day and say to yourself ' you have done the best you can today and tomorrow you will get up and do the best you can tomorrow'. So today please make that call and you will find lovely people at these groups that understand exactly what you are going through.

You both don't need to deal with AD alone.

Carol x

 

[mousie]

We understand how hard it is as we live and experience the same problems.

It is the most alarming and cruel condition to live with. What others have said about taking one day at a time is good advice, but hard to remember at difficult times during the day or night.

My husband is now 61, he was diagnosed just over a year ago after symptoms for more than 8 years, and in great physical health. Since then AD has gained momentum and is more progressive every day. I think I am mourning for the loss of a wonderful man.

I hope you will find support and advice through this forum and hope we may help each too.

 

[Scarlett123]

It is the most alarming and cruel condition to live with. What others have said about taking one day at a time is good advice, but hard to remember at difficult times during the day or night.

My husband is now 61, he was diagnosed just over a year ago after symptoms for more than 8 years, and in great physical health. Since then AD has gained momentum and is more progressive every day. I think I am mourning for the loss of a wonderful man.

I hope you will find support and advice through this forum and hope we may help each too.

I think that sums up the feelings of so many of us. I feel bereaved, and yet there hasn't been a funeral. I am a "midow" - neither married or a widow. I've had bad days, one after the other, and an increase in the verbally abusive comments.

But I've got through - just. It's piddling down with rain, again, but John is at his club, I'm meeting a friend for lunch, and then his Crossroads Carer is arriving to give him a bath, whilst I have a nap.

 

[Izzy]

I agree totally. I'm lucky that I can still have Bill at home and he is still a wonderful man. He's just a different man to the one I married.

 

[Auntiep]

It's a hard slog, and likely one you will have to endure mostly solo.
I have viewed my own mother cope with my father's illness these past 6 or so years, and for a few years, I lived-in to assist.

What you will find is like-minded people here (mostly women) and a vast amount of support and information. This is useful in that it give you solace that you are not alone.

It doesn't mean you will not have to put "real" things in place though to give you a life outside of just "caring".

How you combat this is entirely based on your own likes, experiences, skills, interests and such-like. Hobbies, interests, they may have faded or you may have to re-engage with some to help along the way. TV / DVD's is not a solution as this rots the brain, pardon the pun - I find TV like bread, it's a short term solution but ultimately a poor excuse for a proper meal, if you follow my drift!

I think maintaining a routine, adding interest as oft' as possible, and i'm talking about everyday, going on weekly visits places, coffee mornings, anything to get you two out and about. This becomes far more important over the years. Do not take the easy route, get out, even if it's just to have a coffee at Tesco's in the late morning.

If you don't look after you, your needs, you will not be a good carer; ergo you need to ensure things happen every day both for you and your husband. This becomes increasing difficult and complex the longer the disease takes. You might find your life seems to close in on you, some so-called friends drop away, so be-it. Keep all social engagements, seek out new ones, new groups to join, new activities to do, meals out and the like.

By putting these things in place early on will both condition other people at these places to your situation (this will make you more comfortable around them also) and your husband will be more comfortable returning back week-on-week (or similar) to these places and people. This will become ever more important as the years take their toll on you both, sorry, but best you prepare for the likely scenario ahead.

I hope this is of some practical help, I'm a bloke, so don't major on the whole "sympathy" stuff, for me it's the practical things I am more concerned with.

Really helpful advice! Thanks

P x



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[oakley]

You are not alone!

My wife of 54 years of marriage is very slowly Slipping away from me. Three years in a care home, no longer able to feed herself, talking almost gone, walking gone etc etc. I fight this illness and get comfort from seeing Her every other day, and take over feeding her food to her when I go. I take comfort in the fact that we are still doing something together. Then its the going home to an empty home! Being a born again Christian, Jesus gives me strength through my faith in Him.

I recently felt the Lord say to me to "let go of her and I will take over the Pain," "Trust ME". It was very hard to do, but I feel better now that I have. I hope my story will help, you are not alone!

 

[glennie]

Hi Trisha.. I am very late in making this comment, but I truly understand how you feel, my hubby alternates between bouts of rage and then helplessness. I live out in the country on a Residential Park, and the people who were so friendly before (We have lived here for nearly 10 years) since finding out what my dear hubby has, well no friends on the Park anymore!! As several other people have said, try and go to Carers Meetings and also try The Princess Royal Trust. I have made an effort to go and they have been wonderful, not only Alzhiemers, but their Helpers are very very supportive and caring.
I would go more, but cannot leave him on his own and I would have a scene if a helper came in for a few hours to keep an eye on him. I have no family near so at the moment I am trying very hard to "Put up and Shut up" Another thing, can your hubby go to a Day Centre then perhaps you could get out and meet people. I sincerely hope you can find a way to ease your loneliness. My thoughts are with you, glennie