Dementia’s journey

[Dutchman]

I’ve just phoned the home and asked how my wife is and she’s washed, eaten half her dinner and she’s now wandering around the corridor.

I feel so unhappy for her as she must be so anxious and disoriented most of the time. When I saw her yesterday it seemed she was dying in front of my eyes as her whole personality has altered. Not surprising given the combination of a UTI, medication and her vascular dementia. I’m really sorry that I put her in the home and the guilt is tremendous but she’s now having the care l couldn’t give. Problem for me is that it’s in the confines of a care home.

I could do most things, change her, wash her if she’d let me and cook meals. But suppose I had to do all that with little sleep, and suppose I got ill with a bad cold and felt wretched. But It’s hard to be realistic when the emotions of loss are so raw.

 

[notsogooddtr]

You have made the right decision but are eaten up with guilt.You know deep down that you couldn't care for your wife at home any longer.You seem to be tormented by 'what ifs'.I hope you get your referral to the mental health team soon and that the medication kicks in and at least takes the edge off your suffering.

 

[Dutchman]

You have made the right decision but are eaten up with guilt.You know deep down that you couldn't care for your wife at home any longer.You seem to be tormented by 'what ifs'.I hope you get your referral to the mental health team soon and that the medication kicks in and at least takes the edge off your suffering.

Went to see my wife and changed her for bed. So I’m pleased that i was useful but the rest of the time she was anxious and just wandering all the time. She does this when I’m there and when I’m not. Apparently wandering is common with dementia, I just wish it wasn’t her as none of the other residents do it. It’s a wonder she’s not worn out.

I feel so worried for her that she is not settled and is calmer only when she sleeps, has her food or a wash. Her agitation is exactly the same as it was when she was at home.

 

[Rosebush]

My husband wanders up and down the corridors all the time, even through the night, although it it doesn't seem as bad now as when he first went into the home 8 months ago. He has also had 3 seizures in the last few months but now he has been put on medication he seems fine. I do hope you will feel better soon, I try to keep myself busy, at the moment I am decorating one of the spare bedrooms! and I really hate painting, but anything is better than watching daytime telly. Please look after yourself, it's taken me a while but I'm getting there.

 

[Wifenotcarer]

My husband wanders up and down the corridors all the time, even through the night, although it it doesn't seem as bad now as when he first went into the home 8 months ago.
My OH is a wanderer too. There are 5 units in his CH and he is well known and welcomed in all of them. Apparently he has been known to appear in each unit around 11 in the morning or 3 in the afternoon and accept a cup of tea and a biscuit in each one. The staff say that they are pleased to see him walk so much as it keeps him mobile and fit.

 

[Dutchman]

It’s a dreadfully horrible day outside that mirrors my mood. I had a melt down this morning. Why is it always in the morning and why is it so hard to get out of bed? It’s almost like the bed is warm and a refuge against the rest of the day.
Just when I think I’m feeling better then thoughts of depression and my wife leave me breathless with panic and anxiety. I know all you lovely people are supporting me but sometimes it’s all too much to cope with and I see no end to being unhappy. The days are so long.

 

[canary]

When are you going back to see your GP about your medication @Dutchman ?
When I had a breakdown I was put on antidepressants, but after 2 weeks it was obvious that they were insufficient and the dosage was increased. Im wondering whether you need an increased dose too.

 

[Dutchman]

I’m all over the place. Got a phone call from the Mental health team who are monitoring my wife. They phoned the home and it seems she may have had another stroke as her mouth has dropped and she very subdued while yesterday she was very animated and constantly wandering. My wife is deteriorating and my neighbour has kindly gone to the home to find out more. I’m a coward and can’t face going. I don’t think I can take any more.

 

[Guzelle]

I’m sorry to hear this. I’m glad your neighbour has gone to see her. Having someone else involved always helps. Will your daughter come up and stay with you for a while?

 

[Dutchman]

How’s does anyone actually cope with any of this. My wife since yesterday has developed a lowering of her head and cannot straighten up. Her doctor came to the home and said it wasn’t a stroke but could be a symptom of the dementia.

She has gone from energetic with dementia at home to going into the care home and being completely subdued, lethargic and out of it in just 7 weeks. I feel that this is going to be the end for her and my doctor more or less said prepare yourself.

I feel I’m going crazy indoors. I can’t drum up and enthusiasm for anything. I worry about her all the time and now I’m remembering how she used to speak to me, little things like hello, do you want a cup of tea. How she was always glad to see me, her smile. I’m crying now, I’ve never done so much crying. I don’t know if I can do this anymore and there’s no one to help.

 

[notsogooddtr]

I think you might have done this before but would you ring the Samaratins?

 

[kindred]

How’s does anyone actually cope with any of this. My wife since yesterday has developed a lowering of her head and cannot straighten up. Her doctor came to the home and said it wasn’t a stroke but could be a symptom of the dementia.

She has gone from energetic with dementia at home to going into the care home and being completely subdued, lethargic and out of it in just 7 weeks. I feel that this is going to be the end for her and my doctor more or less said prepare yourself.

I feel I’m going crazy indoors. I can’t drum up and enthusiasm for anything. I worry about her all the time and now I’m remembering how she used to speak to me, little things like hello, do you want a cup of tea. How she was always glad to see me, her smile. I’m crying now, I’ve never done so much crying. I don’t know if I can do this anymore and there’s no one to help.

Dutchman, I know. We are here to help. I used to pretend the members on here were actually talking to me, and I'd even read their replies aloud!
It helped me. I think asking for enthusiasm for anything is a bridge too far. Just read for five minutes, the papers or something. You will cope with this, I know it's the most ghastly thing to go through, I know.
with love, kindred.

 

[jugglingmum]

I'm so pleased to read your neighbour is supporting you.

I think asking for enthusiasm for anything is a bridge too far. Just read for five minutes, the papers or something.

Kindred has far more experience than me, but I don't think you will actually enjoy anything the first second or third time you do something, it is just like the couch to 5k type things that are being promoted for running, you are training your mind to concentrate on something else, and pleasure of doing the thing will come later.

Read the paper, try a crossword, if you manage to answer one clue today, aim to answer 2 tomorrow. Baby steps will slowly get there.

 

[kindred]

I'm so pleased to read your neighbour is supporting you.



Kindred has far more experience than me, but I don't think you will actually enjoy anything the first second or third time you do something, it is just like the couch to 5k type things that are being promoted for running, you are training your mind to concentrate on something else, and pleasure of doing the thing will come later.

Read the paper, try a crossword, if you manage to answer one clue today, aim to answer 2 tomorrow. Baby steps will slowly get there.

Absolutely. There's a thing I recommend for youngsters that works with us too, it's two more. If you read one paragraph, read two more... so for us, too, it would be, if you pull up one weed in the garden, pull up two more. If you dust one table, dust two other things ...
anyway, you get the idea. You are right, pleasure comes later. Thank you jugglingmum.

 

[Pete1]

@Dutchman ....I hope you are ok. There is hope. When my lovely partner died (10 years ago - unexpectedly) I cried every day for three years when I woke up. I still feel it everyday, just not as acute. I do love life now. All the best.

 

[Dutchman]

I'm so pleased to read your neighbour is supporting you.



Kindred has far more experience than me, but I don't think you will actually enjoy anything the first second or third time you do something, it is just like the couch to 5k type things that are being promoted for running, you are training your mind to concentrate on something else, and pleasure of doing the thing will come later.

Read the paper, try a crossword, if you manage to answer one clue today, aim to answer 2 tomorrow. Baby steps will slowly get there.

So I’m in bed at 22.30. It’s not so bad this time of day. It’s the mornings I dread. There’s so much time to fill up and little to do. I saw my wife today and she seems a little better. I still worry about her so much in the home . She can’t keep still and is up and down and wandering a lot. She constantly walks the corridor and is only still when in bed or eating. I wish she was more contented.

I saw her doctor today and she said that she thinks the reason I’m so upset is that I cared for her at home for so long. But I cared because it was the natural thing to do. And believe it or not I miss her company. We’re strange creatures aren’t we craving the comfort of company above all else.

 

[Dutchman]

I’ve just come back from a carers meeting and probably the stupidest thing I’ve done this week

All women, I was the only man there. It was chaired by the Carer support officer who had loads of information about how you can access support while you OH is still at home. There is respite available and I feel I didn’t investigate this fully and now am left agonising over my decision on that last day to place her in the home. One woman hogged the meeting talking about her husband. Everyone had their OH at home

I feel a total failure due to my inability to protect my wife from going into the home. My guilt is now doubled. I just wish so much that I’d had someone with me on that day who could have supported me in my decision.

I wished them all well and explained my circumstances and left feeling wretched and selfish because I just wanted the stress of my wife’s dementia behaviour to stop.

I miss her terribly and feel I’ve let her down.

 

[RosettaT]

Actually Dutchman, I see your decision to place your wife in a home as very brave and totally unselfish. There comes a time when we have done all we can. You still love and care for wife, it's just in a different way now.

 

[canary]

I do feel, Dutchman that you have been teetering on the edge of a nervous breakdown for a very, very long time. Far from giving up too soon, my personal feeling is that you went on far too long and now you are having to work through it all.

Think about what your wife is like. Could you cope with this at home? She is in quite advanced stage of dementia and you are bound to see changes.

Im also thinking that you need to go back to your GP about your antidepressants, which really should be kicking in now.

 

[Bunpoots]

Actually Dutchman, I see your decision to place your wife in a home as very brave and totally unselfish. There comes a time when we have done all we can. You still love and care for wife, it's just in a different way now.

I agree with this Dutchman. Your wife needed professional care and it's a testament to your love for her that you were, and are, willing to suffer this awful loneliness for her sake.