• All threads and posts regarding Coronavirus COVID-19 can now be found in our new area specifically for Coronavirus COVID-19 discussion.

    You can access this area by going to the Health and wellbeing forum >here< or you can directly access the area >here<.

Dementia’s journey

canary

Registered User
Feb 25, 2014
11,630
South coast
Suppose I did and this is what she wanted all along and I couldn’t get her back in the car and she gets really upset and it destroys all the work the home has done.
It might have the opposite effect. When mum first went into her care home I knew very little about dementia and I have made all the mistakes under the sun.

I actually took mum back to her bungalow to choose some pictures and knick-knacks for her room in the care home. However she didnt recognise it her her own home, got very agitated and demanded to know whose home it was and why had I brought her there? Why I said it was her bungalow she started shouting that it wasnt hers and I had to take her home RIGHT NOW and if I didnt she would walk home and tried heading out of the door :eek: Fortunately, I had a friend of hers with me and between us we bundled her back into the car and took her back to her care home with her shrieking all the way. The care home carers calmed her down (we all needed a cup of tea!) and by the time we left I dont think she remembered going so all was OK again, but I never did that again and it taught me that when she was demanding that I take her home, she didnt mean her bungalow.

I hope I havent upset you with this story, but I do feel that the Admiral Nurse didnt give you very good advice.
 

Dutchman

Registered User
May 26, 2017
525
Devon
It might have the opposite effect. When mum first went into her care home I knew very little about dementia and I have made all the mistakes under the sun.

I actually took mum back to her bungalow to choose some pictures and knick-knacks for her room in the care home. However she didnt recognise it her her own home, got very agitated and demanded to know whose home it was and why had I brought her there? Why I said it was her bungalow she started shouting that it wasnt hers and I had to take her home RIGHT NOW and if I didnt she would walk home and tried heading out of the door :eek: Fortunately, I had a friend of hers with me and between us we bundled her back into the car and took her back to her care home with her shrieking all the way. The care home carers calmed her down (we all needed a cup of tea!) and by the time we left I dont think she remembered going so all was OK again, but I never did that again and it taught me that when she was demanding that I take her home, she didnt mean her bungalow.

I hope I havent upset you with this story, but I do feel that the Admiral Nurse didnt give you very good advice.
I just wish I could determine from my wife exactly what she means by ‘home’. I have asked ‘who is at home ‘ but she’s unable to put the jumble of her thoughts into words. I still suspect she means our house that’s why it’s so upsetting for me when she says ‘I want to go home.’ Dementia is the cruelest condition for everyone and for me it’s caused heartbreak and loneliness. Unless you’ve been or are going through this then people don’t have a clue.
 
Last edited:

Grannie G

Volunteer Moderator
Apr 3, 2006
70,659
Kent
Hello @Dutchman.

Did your wife ever say she wanted to go home when she actually was at home with you?

My husband often said he wanted to go home but it was either the home of his childhood with his brothers or the home of his non-existent `real wife and family`

When he expressed the wish to go home from the care home, it was less upsetting for me because I had an idea which home he meant and it wasn`t any home he had shared with me.
 

Dutchman

Registered User
May 26, 2017
525
Devon
I’ve just driven up from Devon to my daughter . 4 hours. Been thinking all the way. All the time my wife was at home, even when she was really bad with the dementia, she was still my best friend. In fact while we were together I didn’t need anyone else, we did everything together, and there was certainly no chance to make fresh friends when she didn’t want to go anywhere in the past year.

Now all I have is my family and possibly two friends and next door neighbors
Not much is it! I’m now paying the price for depending on her for my sole company and it’s just got to me what a uphill struggle it’s going to be being sociable again.

I went to a little get together last night but mainly couples so I left early. As soon as you tell people that your wife’s in a care home they murmur’ oh I’m really sorry’ and it sort of kills the conversation and I’m really hurting inside and just want someone to understand what I’m going through. If they only appreciated how lucky they are and never take togetherness for granted.

Anyway, that’s what I’ve been thinking while driving. Helps to get it off my chest.
 

kindred

Registered User
Apr 8, 2018
2,362
I’ve just driven up from Devon to my daughter . 4 hours. Been thinking all the way. All the time my wife was at home, even when she was really bad with the dementia, she was still my best friend. In fact while we were together I didn’t need anyone else, we did everything together, and there was certainly no chance to make fresh friends when she didn’t want to go anywhere in the past year.

Now all I have is my family and possibly two friends and next door neighbors
Not much is it! I’m now paying the price for depending on her for my sole company and it’s just got to me what a uphill struggle it’s going to be being sociable again.

I went to a little get together last night but mainly couples so I left early. As soon as you tell people that your wife’s in a care home they murmur’ oh I’m really sorry’ and it sort of kills the conversation and I’m really hurting inside and just want someone to understand what I’m going through. If they only appreciated how lucky they are and never take togetherness for granted.

Anyway, that’s what I’ve been thinking while driving. Helps to get it off my chest.
And it's interesting to read, Dutchman. Family a couple of mates and neighbours is actually a great foundation for socialising. It's a real start. I think it's normal to rely on our partners for company, and often for our sole company. I know, the couples thing is difficult. You are doing great just to go to the get together in the first place. I try to look upon couples as extra people to meet rather than folk who have what I haven't if you see what I mean. I feel I'm just waffling, but wanted to say I appreciate you writing your thoughts like this. When Keith was in the nursing home, high spot of my life was coming home and posting on here, telling you all what the day had been like.
Anyway, with you all the way. Hope time at your daughter is good. Kindred.
 

Dutchman

Registered User
May 26, 2017
525
Devon
And it's interesting to read, Dutchman. Family a couple of mates and neighbours is actually a great foundation for socialising. It's a real start. I think it's normal to rely on our partners for company, and often for our sole company. I know, the couples thing is difficult. You are doing great just to go to the get together in the first place. I try to look upon couples as extra people to meet rather than folk who have what I haven't if you see what I mean. I feel I'm just waffling, but wanted to say I appreciate you writing your thoughts like this. When Keith was in the nursing home, high spot of my life was coming home and posting on here, telling you all what the day had been like.
Anyway, with you all the way. Hope time at your daughter is good. Kindred.
Thanks kindred. I went to the doctor again this morning ( he looked really concerning as I went yesterday as well) I wanted to clarify my meds with him and he was pleased that I was making the trip today. He is thinking of referring me to our Mental Health team ( my wife’s already with them) if my stress doesn’t improve. I said to him that I’m concerned about going into clinical depression. He agreed. So I wait for blood tests and an ECG next week.

I really feel we can write anything here. Can’t see the point in holding back. Anyway dementia caring opens the hearts and mind for me to others.
 

Guzelle

Registered User
Aug 27, 2016
418
Sheffield
I’ve just been to visit myOH in the care home. Every time I go he thinks i have cone to take him home. I go along with it or he gets upset. It’s heartbreaking I’d love to bring him home he is my best friend and I am so lonely at hone. I have my daughter and grandson who I see at least twice per week. I also go walking with a group. If only he would attend day centres or accept home Carers but I have tried both and he refused.
 

northumbrian_k

Registered User
Mar 2, 2017
966
Newcastle
Our local park has a group of 'Friends' that help to maintain it, organise events and ensure that it is used by the local community. I haven't been involved hitherto but am hoping to be in future. You might consider volunteering for a local community organisation @Dutchman as that will certainly help to widen your social circle and give you something else to talk and think about other than dementia and loneliness. Except on here of course, where posting about how you feel will always find someone who understands ...
 

Dutchman

Registered User
May 26, 2017
525
Devon
Another thought I had is that my wife’s been in home for just 6 weeks tomorrow. Much calmer, eats well, sleeping and is showered every day. Quite a difference.

However, I just can’t accept 100% that she’s not coming home. To accept that she’s never going to step through the door is hurting me terribly. It’s really like accepting that she has died and in a way she has I suppose.
 

Dutchman

Registered User
May 26, 2017
525
Devon
I missed out seeing her today so the next time will be Saturday afternoon. I just wonder if she misses me at all if I don’t go. She recognises me when I walk in the home but after a while she sees me as an opportunity to see if she can get out. If we do go out to the local cafe she never makes a fuss about going back through the care home door, never holds back.

I suppose I’ll never know exactly what she’s thinking. I wonder if even the experts know. I’m pretty calm at the moment and hope that waking up tomorrow in a house full of people will make it easier to get out of bed. Does anyone else find it difficult to get out of bed in a house alone? . I find the mornings the worse, facing the day is terrifying sometimes.
 

Kay111

Registered User
Sep 19, 2019
183
Hi @Dutchman - I've read a few of your posts and I just wanted to pop up and say I'm so sorry it's been such a roller coaster, and I'm really glad you're reaching out and getting help.

What's so very, very evident is how much you love your wife and for what it's worth, having read your posts I have no doubt you've done the right thing, as hard as it's been for you. My mum is my dad's 24/7 carer and I hear SO much of her when I read your posts - the feelings of loss and guilt and the struggle and everything else that comes with it. So much so that I might send her a few of your posts (and all the wonderful responses from this community) to show her that she's not alone in this (even if she feels like she is!). I am desperate for her to have some quality of life, a break from the relentless day-to-day caring so what time she does spend with Dad as good as possible and isn't just clouded by the struggle.

(You write so eloquently and so thoughtfully. Perhaps one day in future, if you wanted to, I wonder if you'd think about writing and sharing your experience. I don't mean now, as I know there's too much going on emotionally. But maybe one day when you feel everything is settled enough and you had a few spare hours in between visits to your wife. It would probably be the kind of thing that would help so many others. I only think of it as I'm a phone befriender via Friends of the Elderly (until that program shut down. But I still chat to the lady I was paired with) and she went through a period of substantial loss. We would talk and I think it made her feel better to share her story. We actually ended up recording her family story and it's all saved and she'll give it to her granddaughter one day when her granddaughter's old enough. Maybe it will be too painful and the last thing you want to do, and if so, apologies.)

Either way, please always take help if it's there (that's what my Friends of the Elderly lady tells me all the time!). All best to you and yours.
 

Dutchman

Registered User
May 26, 2017
525
Devon
Christmas time. Yes I’ve even been thinking of what will happen as this year will be like no other.

Has anyone experienced the first care home Christmas dilemma away from the usual family get together. My wife would not know it’s Christmas anyway and last year it was spent here, at my daughters, with family popping in to see her. A lot has happened in less than a year.
 

canary

Registered User
Feb 25, 2014
11,630
South coast
Care homes always make a big fuss over their residents at Christmas.
There are always decorations, and on Christmas day; a visit from Santa. presents to unwrap, carol singing, Christmas dinner; party games and hats. Mum had a great time (although Im still not sure that she knew it was Christmas :rolleyes: )
I had the option of staying with mum on Christmas day, joining in and having Christmas dinner there, or spending it with family and coming over on boxing day with presents. Both work.
 

Pete1

Registered User
Jul 16, 2019
558
Hi @Dutchman, have you told your family how you are feeling? The reason I say this is when my Dad went into care (with dementia and physical impairments) my Mum was devastated (there was no way she could manage anymore - I would see that), I knew she was very low but didn't realize how much until I was looking through her diaries when I was clearing the bungalow after she passed away. I felt absolutely devastated that I didn't fully understand what she was going through and if I had known I think I would have done more than I did. Ironically Mum was diagnosed with dementia two years after Dad passed and then I totally understood the massive guilt and sense of loss, and everything she had experienced as 'the one'. I'm not saying they will fully 'get it' but it might help them to get some context, as it is a natural reaction to believe that 'it's for the best' as we all want everything to work out in a 'perfect way', but, quite naturally, it isn't that for you and perhaps it would help if they heard that. I wish you well, take care of yourself.
 

Dutchman

Registered User
May 26, 2017
525
Devon
My family are with me all the way in placing their mum into the home. They knew exactly what I had to cope with during the past few years and they also know how I feel now, I don’t hold back.

They all reflect their feelings differently though. My step daughter and the closest to her mum is supportive and emotional, my step son is practical and my daughter is one for telling me what to do to get better.

They visited the care home last week but their mum and my wife doesn’t remember. I think she just remembers today and that seems to be a muddle. I just hope and pray in this muddle that she doesn’t experience a great deal of unhappiness. She’s anxious most of the time but does sleep well which is more than I do.
 

Pete1

Registered User
Jul 16, 2019
558
That is reassuring to hear @Dutchman, about your wider family. I do understand re the sleep, there's no non-meds answer to that...and that in itself magnifies everything and makes it all much worse. Peace of mind always seems out of reach....over time, you can grasp it. .
 

northumbrian_k

Registered User
Mar 2, 2017
966
Newcastle
I didn't bother with Christmas at all last year @Dutchman. The year before, the cards just confused my wife as she read each one over and over again, not recognising what they were for or who they were from. I didn't put them up last time. We weren't welcome at her son's (and I wouldn't drive to London with her anyway) but could have had a family Christmas at my sister's. There seemed little point and plenty of potential for spoiling everyone's day.

So we took the dog to the beach instead. it was cold but we had a good time. This year I am quite looking forward to a more traditional Christmas again, albeit in the care home with my wife, the other residents and staff some of whom I now consider to be my friends. It is all new to me too but I'm going to make the best of the situation if I can.
 

Dutchman

Registered User
May 26, 2017
525
Devon
I’m going to chat to the near family and I’m sure we’ll come to a mutual understanding about Christmas. Anyway, it’s about do the right thing all around for everyone including the care home.

And Christmas is 3 months away. I can’t imagine what the situation will be that far ahead. But of course I still wonder about it.