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Dementia’s journey

jenniferjean

Registered User
Apr 2, 2016
831
0
Basingstoke, Hampshire
The support group was my salvation at one time, alongside Dementia Talking Point. Two places where I could go where people understood what was happening in my life.
I've searched my area but no support group for me I'm afraid, so TP is all I have. But I think without TP I wouldn't have managed as well as I have so far. I don't think I'd have been sitting here looking at this screen now. It's knowing that someone somewhere understands what you are going through. Without TP I wouldn't have known that, I would have thought I was alone.
 

Dutchman

Registered User
May 26, 2017
935
0
Devon
I've searched my area but no support group for me I'm afraid, so TP is all I have. But I think without TP I wouldn't have managed as well as I have so far. I don't think I'd have been sitting here looking at this screen now. It's knowing that someone somewhere understands what you are going through. Without TP I wouldn't have known that, I would have thought I was alone.
Absolutely. I’ve found that no matter what’s on your mind it doesn’t matter as there is always someone on the forum who understands and never judges you. I’d be lost ( well lm already lost) well more lost without it
 

Dutchman

Registered User
May 26, 2017
935
0
Devon
Hello Dutchman, my OH is in a care home and he always wants to come home especially if I go alone to visit. It’s so upsetting as I would love for him to come home but I know I’ll struggle to cope with him as he can be aggressive and paranoid. If I speak to a man in the home who likes to chat he gets angry accusing me of having an affair with him.

I wish I could take him out for a walk and coffee but I don’t think he would go back. He gets upset because he can never remember where his room is. I always tAke him to it but it’s up to the next floor in the lift and that confuses him.
If he comes home I’m worried he could be very angry and aggressive with me.
I know exactly how you feel. My wife is constantly conspiring to get out and sets up a tension between us two that kind of spoils my visit. She still knows that turning right out of the garden centre cafe equals our town turning left equals going back to the home. I’ve had times where it would be so very easy to take her back to our house. Oh so very tempting. So emotionally tempting. I’d have her back home in a heartbeat.

But I know that by doing that I’m just delaying everything and it would undo the work of the home. And how would I ever know what my wife would do or what her behaviour would be like once she got here. In my fantasy it would all be ok. But life isn’t a fantasy, it’s grim reality.

I have to hold on to the fact that at the home she is well looked after, showered daily, now eats well, is taking her medication and is generally less anxious. Just helping one of the staff to get her changed into nightwear was difficult so doing that on my own would be extremely challenging. Thing is, when she was here I gave up in the end and it couldn’t have gone on for much longer.

Can I ask, has the doctor recommended medication for the behaviour. My wife is on a low dose to calm her down. Just wondering.
 

Guzelle

Registered User
Aug 27, 2016
421
0
Sheffield
Hello Dutchman

My OH is taking risperidone and has been for almost a year. The dose has been increased twice. He was a lot calmer today when I went. He is still on respite I’m unsure what to do I would love him home if I could have carers to help. It’s so difficult to know how he would be if he came home, He has been there for 4 weeks up to now. I still cant drive yet after my eye operation hoping to drive again in about 2 weeks will see how he is then!
 

Dutchman

Registered User
May 26, 2017
935
0
Devon
No you did what was best for your wife. This is just a horrible part of grieving for the personality changes your wife is experiencing. Easier to blame oneself than blame a disease that’s deprived you of your wife.
Being sad & angry is emotionally draining but part of a grieving process. For those with loved ones with dementia it’s a continuing grieving process as more of our loved ones are lost to this disease.

I am determined that my experiences of dementia will not define me as a person. I will not be taken & consumed by it as a bystander. Dementia takes & destroys so much, I will be my loved ones legacy.

I’m seriously thinking of going to our local church this morning just for something to do. They’ll be some people who know me.

I’m so lonely here. This house where she’ll never come back to. Had a melt down this morning crying and sobbing and saying that I didn’t see much point to any of our house if she’s not with me. Carers groups are advised but I’m not ready to listen to others tales of caring. Anyway they have theirs at home not in a home so at least they still have someone at home to care for even if the job is hard.

My family don’t get in touch now as they think everything is more or less settled and I can manage. Well I can’t manage and I think I’m going out of my mind with fears for any future I might have. Few friends but they trickled away during the past years.

And now I’ve got all f next week to get through somehow
 

canary

Registered User
Feb 25, 2014
14,359
0
South coast
Join in everything you can dutchman.
There will be some things that will make you think - "Im not doing that again", but there may be other things that surprise you by being something that helps that you would not normally have thought of.
 

Dutchman

Registered User
May 26, 2017
935
0
Devon
Join in everything you can dutchman.
There will be some things that will make you think - "Im not doing that again", but there may be other things that surprise you by being something that helps that you would not normally have thought of.[/QUOTE

Well I’ve come back from church and I think it’s made me worse than ever. Come home and sobbing and strangely enough feel more lonely than before. I just want to better. Is that too much to ask? Even surround by the congregation I feel physically ill and all that talk of righteousness and suffering and there was a hymn about loss. No, I managed to the end and then left.

I feel I need to sleep. I do a lot of that.
 

notsogooddtr

Registered User
Jul 2, 2011
963
0
You sound very distressed Dutchman.Would counselling be a possibility?Someone just to listen.I had counselling when my younger sister was dying.It didn't change what was happening but did help me to a place of acceptance.
 

kindred

Registered User
Apr 8, 2018
2,559
0
Dutchman, and again you know I have been through this, there is nothing I know of that makes us feel better quickly, no real one shot solution. I wish. We need to persist, counselling, hypnotherapy, whatever. For me it's a case of finding a philosophy that works. This morning, helping at the home where Keith died, I felt terrible, so sad (sad classical music with a hand massage session …) that I felt I would die with sadness. Then one of the nurses said, my goodness it makes a difference when you are here … and I felt, well I've been useful and earned my existence today. That helped enormously.
with warmest wishes, with you all the way, Geraldine aka Kindred.
 

Vintagegal13

Registered User
Aug 29, 2019
10
0
Hello Dutchman, Just a thought, have you considered contacting your local AGE UK if you are old enough. I am 61, and have a befriender visit me once a week, and also they ring me every week for a chat and update. It is not related to any illness whatsoever.

After I lost my husband, I attended groups related to his illness and carers, and do you know what, it made me worse. Everything revolved around that, and there was no escape.

The AGE UK let you talk about things if you want to, otherwise they find common interests, hobbies etc., and they also have community groups you can join local to you. It is something different to occupy your mind for a little while.

I wish I lived near to you, and could be of more help.

Even if you are not old enough, they will signpost you to the suitable groups for your age.

Wishing you strength, warmest wishes to you.
 

Guzelle

Registered User
Aug 27, 2016
421
0
Sheffield
I’m sorry you are feeling so down.
I feel lonely as my OH is in respite. The house feels empty. It is much easier just looking after myself and everyone says why don’t you let him stay there!

When he is here it’s hard to go anywhere because he doesn’t want to come with me but he gets confused on his own and can be very agitated and nasty when I return as he can’t remember where I’ve been.
He wants to come home all the time when I visit. My daughter has been on holiday in France this last week which has made the loneliness worse. She is home now and is visiting tomorrow. I really don’t know what to do? Maybe I could try Carers in the home so I can still go out on my own.?
 

DesperateofDevon

Registered User
Jul 7, 2019
2,742
0
Tears are always near the surface, the brave face I put on often crumbles! But dementia has taken so much I will not let this disease break me!
(((((((((((((((Hugs )))))))))))))))
 

DesperateofDevon

Registered User
Jul 7, 2019
2,742
0
I’m seriously thinking of going to our local church this morning just for something to do. They’ll be some people who know me.

I’m so lonely here. This house where she’ll never come back to. Had a melt down this morning crying and sobbing and saying that I didn’t see much point to any of our house if she’s not with me. Carers groups are advised but I’m not ready to listen to others tales of caring. Anyway they have theirs at home not in a home so at least they still have someone at home to care for even if the job is hard.

My family don’t get in touch now as they think everything is more or less settled and I can manage. Well I can’t manage and I think I’m going out of my mind with fears for any future I might have. Few friends but they trickled away during the past years.

And now I’ve got all f next week to get through somehow

So today has been a tough day, tears & raw emotions are running high for me at the moment to.
Tomorrow is another day.
Yes I crave sleep, & my bed beckons....
 

nestle

Registered User
Jul 22, 2016
67
0
Southwest but Yorkie by birth
Dear Dutchman, I Hope you have got through your day. I share your pain, my partner moved to a care home 3 months ago and I have been riding a roller coaster of grief ever since. He is three hours away, I visit every week and each time my heart breaks all over again. What we go through is so cruel nobody knows until they have to do it. Take all your courage in your hands and for now keep putting one foot in front of the other. Hugs to you Dutchman
 

Dutchman

Registered User
May 26, 2017
935
0
Devon
You sound very distressed Dutchman.Would counselling be a possibility?Someone just to listen.I had counselling when my younger sister was dying.It didn't change what was happening but did help me to a place of acceptance.
I’ve tried counselling and I’m going to hypnotherapist next week

It still doesn’t make less lonely. I’ve never been on my own, ever. And the problem
Dutchman, and again you know I have been through this, there is nothing I know of that makes us feel better quickly, no real one shot solution. I wish. We need to persist, counselling, hypnotherapy, whatever. For me it's a case of finding a philosophy that works. This morning, helping at the home where Keith died, I felt terrible, so sad (sad classical music with a hand massage session …) that I felt I would die with sadness. Then one of the nurses said, my goodness it makes a difference when you are here … and I felt, well I've been useful and earned my existence today. That helped enormously.
with warmest wishes, with you all the way, Geraldine aka Kindred.
I’m sorry you are feeling so down.
I feel lonely as my OH is in respite. The house feels empty. It is much easier just looking after myself and everyone says why don’t you let him stay there!

When he is here it’s hard to go anywhere because he doesn’t want to come with me but he gets confused on his own and can be very agitated and nasty when I return as he can’t remember where I’ve been.
He wants to come home all the time when I visit. My daughter has been on holiday in France this last week which has made the loneliness worse. She is home now and is visiting tomorrow. I really don’t know what to do? Maybe I could try Carers in the home so I can still go out on my own.?

I considered a live in carer but the downside is that you take a chance of it working out. I would be here plus carer and wife. The carer needs time off so you get a different carer. It all too iffy. Believe me if I thought it would work I’d do it. But the care home have loads of people to call on and I help if I can.

My wife it getting more compliant now so it’s easier to get her showered and changed.

If someone could work out a way to have back with me and confirm that she would ok then I’d jump at the chance. I’m very lonely here and believe me it’s been tempting.
 

Dutchman

Registered User
May 26, 2017
935
0
Devon
Dear Dutchman, I Hope you have got through your day. I share your pain, my partner moved to a care home 3 months ago and I have been riding a roller coaster of grief ever since. He is three hours away, I visit every week and each time my heart breaks all over again. What we go through is so cruel nobody knows until they have to do it. Take all your courage in your hands and for now keep putting one foot in front of the other. Hugs to you Dutchman

Hello nestle. I might need to have surgery sometime in the future meaning I can’t drive for a number of weeks. I couldn’t visit my wife. I’d need to use taxis and that’s very expensive. My daughter says thats not my problem, that my wife will just have to accept less visits. My wife has dementia, she doesn’t understand acceptance
. It all seems so plain and straightforward in others eyes but wait till they have to experience what we do...the guilt, regrets, loneliness...I could go on.
 

Dutchman

Registered User
May 26, 2017
935
0
Devon
Hello Dutchman

My OH is taking risperidone and has been for almost a year. The dose has been increased twice. He was a lot calmer today when I went. He is still on respite I’m unsure what to do I would love him home if I could have carers to help. It’s so difficult to know how he would be if he came home, He has been there for 4 weeks up to now. I still cant drive yet after my eye operation hoping to drive again in about 2 weeks will see how he is then!

Here’s what gets to me all the time, every time I leave her in the home, every time I feel lonely. Now she is more compliant, no aggression, clean, wearing fresh clothes and sleeping well, I imagine that she’s better and I could bring her home to me. But the home have accomplished all this. Could I continue to do it on my own?

I’m sure others have felt the same and been tempted. What does it take for me to be convinced that she has to stay there.? It’s all just piling on the grief and agony of not having her back here.
 

Guzelle

Registered User
Aug 27, 2016
421
0
Sheffield
It’s so sad I want my husband home aswell but I know how difficult it can be. But it’s so lonely He is only 2 miles away and I can walk there or catch a bus part of the way with a 12 minute walk. He thinks he is miles away and in a hotel. I think about getting Carers in not full time but part time . I have tried before but he wouldn’t accept them and I had to cancel it!
 

Grannie G

Volunteer Moderator
Apr 3, 2006
72,409
0
Kent
I would say it`s because your wife is in the home she has become more compliant and less aggressive @Dutchman.

It`s probably because she is being cared for by a team of people who are not personally involved, who can go off shift and rest and also because there may be lots of hustle and bustle in the home which is distracting.

The same happened with my husband. He was so much better in every way when he went into residential care. He regained much of the weight he had lost. The home`s food seemed much more acceptable than mine, however hard I tried, and the comings and goings of staff and visitors gave him something to look at other than the television and me.

It hurts but it is as it is and I was just glad all his aggression had gone for whatever the reason.