With a little help from my (Talking Point) friends

[Grahamstown]

It is a year since I joined TP and a year since we went for lunch with friends and I realised that he was not himself at all. Life had already got worse and had been difficult for at least a year which was why I had started to make adjustments. I had already started making decisions about what we could and couldn’t manage. We went for a walk and lunch with the same friends yesterday, exactly a year on, and I decided to look back at my story. I was shocked how bad things were for me and the difficulties I was having and all the suggestions made by the people on TP, which I thought were impossible, have come to pass and I am much better. He on the other hand is much much worse. When friends and family ask me how he is now, I say he is well but worse. Then I say and I am well but better. I live virtually alone, no one to chat with about this and that, can’t go out and leave him alone except for short periods, don’t actually want to do things with him any more and only do it to give him stimulation. I am posting this to say that for me life after a diagnosis of Alzheimer’s is one hundred percent better with the forums than it would otherwise have been. I dread to think how bad I would have been and would have been no use to him at all. I still get exasperated by and uncomprehending of this ghastly illness and feel that I cannot go on but the days roll around.

 

[Grannie G]

It`s a really positive post @Grahamstown even though your situation is so difficult.

It is a situation I found myself in so many years ago when it was not safe to leave my husband alone for more than the 20 minutes it took me to walk to buy a daily paper .

It`s an isolated life isn`t it?

Even if I had had time for social activities I would not have wanted them , simply because at that time I had nothing in common with people who were excited about holidays, trips out and the latest celeb gossip.

It`s something only we as carers and former carers understand and it`s so good to read you are making the best of the life you do have now.

It will pass.

 

[jenniferjean]

but the days roll around.

They do indeed. I too feel at times that it can't go on, but we do struggle on. We have no choice. I must admit it does annoy me a bit when people say to me "you're coping well". I feel like saying "you haven't a clue". At least my friends on TP do know what they are talking about.

 

[marionq]

All of the above is quite true. I am waiting to hear if John has been successful in getting respite. If I could have a break regularly then I think i could go on but at present it just feels like a dead weight on my shoulders. What I did find out from the care home he goes to once a year is that social services have their respite beds booked for months at a time. Today they hope to be able to tell me if there has been a cancellation. So much hangs on such little things.

 

[rhubarbtree]

Hi Grahamstown,

I had a look back moment recently but it was ten years. Had to really dig into my memory to think of good things which have happened in this time - holidays (with family support), dinners, outings etc. but on the whole it is just a life of tedium. As you say arranging outings for his benefit (not sure if he does benefit). On my Christmas cards I wrote "X continues to disappear into Alzheimer's" I could not bring myself to use the word "well". My life is consumed with organising his medical appointments, day care and thinking how I deal with challenging behaviour.

Agree with you Grannie G, people think a social occasion will lighten our load. I am at the stage where the mere mention of a date to put in the diary worries me. I cannot rely on his compliance and have to tread so carefully to get him washed and dressed each morning and I start worrying about letting people down or being late.

I cannot contemplate how I would have coped without these forums. There is help and advice for present problems but also a glimpse of what is to come. Forwarned is forarmed.

 

[karaokePete]

I understand you entirely @Grahamstown. The answers you give your friends are the same that I give mine.

It is, indeed, a bewildering, exasperating and lonely life.

 

[Grahamstown]

It is wonderful to be able to share feelings and thoughts with people who understand and in many cases have more difficult lives than I do. That’s the other thing that has changed, a year ago I couldn’t talk to anyone about the grimness but TP opened that door, and now sometimes think I say too much to my children because I can imagine it distresses them. If at times I think that I am being disloyal by this, I just remember what many people say, that it is what is going to save your mental health that counts. Without it you are done for.

 

[kindred]

It is wonderful to be able to share feelings and thoughts with people who understand and in many cases have more difficult lives than I do. That’s the other thing that has changed, a year ago I couldn’t talk to anyone about the grimness but TP opened that door, and now sometimes think I say too much to my children because I can imagine it distresses them. If at times I think that I am being disloyal by this, I just remember what many people say, that it is what is going to save your mental health that counts. Without it you are done for.

I so agree, and I was feeling so ashamed of what was going on, so much shame around what Keith was doing as he got more and more demented. I wanted to protect him so I think I went on pretending all was fine. To be able to talk about how grim it is on here is such a vital thing. Thank you all. Kindred.

 

[AliceA]

If they built an actual boat for us it would have to be quite large!
The fact we all share such a similar situation is sad but supportive too.
My husband seemed worse to day, a shuffly walk, then he played a joke.
Certainly keeps me on my toes!
It is soooooo good to have you all on here, I feel a foreigner in a foreign land sometimes.
May I go home?

 

[kindred]

If they built an actual boat for us it would have to be quite large!
The fact we all share such a similar situation is sad but supportive too.
My husband seemed worse to day, a shuffly walk, then he played a joke.
Certainly keeps me on my toes!
It is soooooo good to have you all on here, I feel a foreigner in a foreign land sometimes.
May I go home?

I so agree, but do you know, I sometimes feel that so called normal life is pretty damned foreign now, and life with Keith in his nursing home is loving and sane. with love, Geraldinexx

 

[AliceA]

I so agree, but do you know, I sometimes feel that so called normal life is pretty damned foreign now, and life with Keith in his nursing home is loving and sane. with love, Geraldinexx

Could you refer us? Having just tackled a few things, knowing I should get up and do more, the sound of a tea trolley sounds good. Well just for a break! Xxx

 

[kindred]

Could you refer us? Having just tackled a few things, knowing I should get up and do more, the sound of a tea trolley sounds good. Well just for a break! Xxx

I would love to. You see, even a tea trolley is an old fashioned thing. When I worked in the civil service when i was 18, the tea trolley was the high spot of the day, twice. Love to be able to refer you, I would give you such a big meet and greet! with love and so good to hear from you, Geraldinexxx

 

[jugglingmum]

My office had a tea trolley until 2005, when we moved and they got rid of it. The plus side was we were then allowed to make our own drinks on a regular basis.

I actually did a tea trolley run in local offices as a summer holiday job (only for a week) when I was about 16. so about 1984.

 

[AliceA]

When the tea lady was ill my mother was asked to step in. She never admitted her fear of lifts and the building had several floors. So she pushed the trolley in, pressed the button and rushed up the stairs to catch it. It was touch and go, she was exhausted! It makes me smile when I remember.

 

[Sad Staffs]

It is a year since I joined TP and a year since we went for lunch with friends and I realised that he was not himself at all. Life had already got worse and had been difficult for at least a year which was why I had started to make adjustments. I had already started making decisions about what we could and couldn’t manage. We went for a walk and lunch with the same friends yesterday, exactly a year on, and I decided to look back at my story. I was shocked how bad things were for me and the difficulties I was having and all the suggestions made by the people on TP, which I thought were impossible, have come to pass and I am much better. He on the other hand is much much worse. When friends and family ask me how he is now, I say he is well but worse. Then I say and I am well but better. I live virtually alone, no one to chat with about this and that, can’t go out and leave him alone except for short periods, don’t actually want to do things with him any more and only do it to give him stimulation. I am posting this to say that for me life after a diagnosis of Alzheimer’s is one hundred percent better with the forums than it would otherwise have been. I dread to think how bad I would have been and would have been no use to him at all. I still get exasperated by and uncomprehending of this ghastly illness and feel that I cannot go on but the days roll around.

Dear @Grahamstown
I relate to everything you said, thank you for putting into words how you feel.
I mentally struggle with how much my husbands dementia has changed me as a person. I feel we are reclusive, we rarely see anyone, rarely go out, we are just disappearing.... of so little importance to the world we used to have.
I hate the way that my personality has changed. I know I’m not the same person. My husband lives in a bubble, a very selfish bubble. I know it is not his fault, and of course I now feel guilty. It’s such a complex life. I had no idea....
Like you I can only tell the truth on here.
People I know have no idea what our life is like.
Please take care, love B xx

 

[Duggies-girl]

@Grahamstown I dread to think where I would be without this forum. I would be isolated because nobody else I know understands how my life is. My husband doesn't understand, other family don't understand, friends don't understand because they are not living it. My life revolves around dad now and it is always there. If I get the odd day off I can't escape from it, it's still there. My life is just different now, This is the only place I know of where I can say what I feel.

I have been told that I am doing a very good job and I know I am. Truth is I don't want this job, I am fed up with it. I has affected my health and I want to run away.

.

 

[Amy in the US]

I don't want this job, either! Dementia is the worst disease I know and I wouldn't wish it on. anyone.

I read somewhere recently about reframing our feelings of guilt, as guilt isn't productive and isn't applicable unless you have actively taken an action you know to be wrong and you intended to cause harm. Feel guilty about robbing a bank or cheating on an examination, but not about someone having dementia. It went on to say that what we carers experience or express as "guilt" might more accurately be grief in many cases. Someone else said, "regret, not guilt." Just some food for thought. I'm not sure it's helpful but thought it likely couldn't hurt.

 

[Grannie G]

Someone else said, "regret, not guilt."

I have regrets. I could have done better.

It`s easy to say with hindsight, not having to be a 24/7 carer, no longer facing the challenges dementia throws in our path.

I do not feel guilt.

I`m sure I did my best at the time with what I had. I know I tried.

This can be said of the majority of people on this forum.

Guilt is destructive and solves no problems. It`s wasted energy.

 

[kindred]

Dear @Grahamstown
I relate to everything you said, thank you for putting into words how you feel.
I mentally struggle with how much my husbands dementia has changed me as a person. I feel we are reclusive, we rarely see anyone, rarely go out, we are just disappearing.... of so little importance to the world we used to have.
I hate the way that my personality has changed. I know I’m not the same person. My husband lives in a bubble, a very selfish bubble. I know it is not his fault, and of course I now feel guilty. It’s such a complex life. I had no idea....
Like you I can only tell the truth on here.
People I know have no idea what our life is like.
Please take care, love B xx

Sweetheart, you are a very important person on here, in our world. Thank you. You help us express what we are finding hard to say, too. with all love, Geraldinexxx

 

[Grahamstown]

“I have been told that I am doing a very good job and I know I am. Truth is I don't want this job” this is what people say to me a lot @Duggies-girl and I feel like screaming no I am not, I am totally unsuited to doing this job 24/7, but of course I just make non commital noises. He has been a bit more settled than usual for the past day which has been more restful and it is a glimpse of the old days. I have been feeling quite strange and I think it is the cold, my heart struggles a bit to pump around so glad he is in a better phase.