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heart breaking feel so alone

Kath1947

Registered User
Jun 28, 2013
6
Manchester
I feel as if my heart is breaking, the tears are flowing. Phil was sectioned yesterday after bout of violence, for my safety he has been sectioned. He looked so lost and afraid, I feel so guilty leaving him there, I have been told I need to be prepared that he may not come home to me.

I thought he would be assessed at home and then asked to take him to the assessment unit in a few days, but yesterday it all happened and we were at the hospital before I drew breath. My daughter in law came this morning, (son is away for work, and daughter lives 300 miles away) and comforted me, bless her, but I am alone again now, how can a house feel so empty, there are so many things I should be doing, bt I cant find the energy/ or cant be bothered, nothing seems worth it now. Cant concentrate on anything.

I rang this morning, he had a bad night and is trying to get out so I wont go in today it will only make him worse, I need to let him settle for a couple of days, I dont know if I am doing the right thing, I know it will upset him if I go in, but it feels wrong to leave him. Oh god why cant they cure this awful disease. I know he is in the best place, and will get the care he needs, but its not helping.

I wish my daughter wasnt so far away.

Oh Mabbs it's like listening to my life, my husband just avoided being sectioned after a violent outburst & being brought home from the day centre, l have just come back from the hospital where he does recognise me initially but then it goes, all bed clothes were off his bed, he says he was making it, I like you am riddled with guilt, l am broken hearted and like you l know he is in the best place but after 48 years it's so hard, he was such a gentle man but now he is so agressive, my daughter & son are closer than your daughter but I still feel so lonely & l do know just how you feel, love n hugs xxxx
 

mabbs

Registered User
Dec 1, 2014
238
Lancashire
Oh Mabbs it's like listening to my life, my husband just avoided being sectioned after a violent outburst & being brought home from the day centre, l have just come back from the hospital where he does recognise me initially but then it goes, all bed clothes were off his bed, he says he was making it, I like you am riddled with guilt, l am broken hearted and like you l know he is in the best place but after 48 years it's so hard, he was such a gentle man but now he is so agressive, my daughter & son are closer than your daughter but I still feel so lonely & l do know just how you feel, love n hugs xxxx
Hello Kath, its an awful time isnt it, the guilt of leaving him, is awful, and I know its the best place for him, its when he looks at me with sad eyes and says he wishes he was at home, thats when I feel as if my heart us breaking. Not sure if he really knows me as I walk in, but he seems to by the end of the visits. He has good days and bad days, me too, going through a bad patch at the moment, the loneliness is the hardest to bear, so used to having someone at home with me, The guilt is awful, yet I know he needs the care that I cant give, one day perhaps I will be able to accept that, but for now I need to keep busy, and not have too much time to think and brood, love and hugs to you too. sandra xxx
 

mabbs

Registered User
Dec 1, 2014
238
Lancashire
visit today was a bit sad, Phil was tearful and sad when I arrived, he was a bit better by the time I left, and he even gave me a kiss on the cheek, and a hug when I left, and he did say he was feeling better when I asked him. Left him watching Dad army in the quiet room, well half watching and half dozing, I am going to a tea party on the ward tomorrow afternoon, he might find that a bit much he is not keen on lots of people, but I can find a quiet area to sit with him if he gets distressed. Tipping down here now, and quite chilly, roll on the summer.
 

Mal2

Registered User
Oct 14, 2014
2,968
Enfield
heart break

I feel as if my heart is breaking, the tears are flowing. Phil was sectioned yesterday after bout of violence, for my safety he has been sectioned. He looked so lost and afraid, I feel so guilty leaving him there, I have been told I need to be prepared that he may not come home to me.

I thought he would be assessed at home and then asked to take him to the assessment unit in a few days, but yesterday it all happened and we were at the hospital before I drew breath. My daughter in law came this morning, (son is away for work, and daughter lives 300 miles away) and comforted me, bless her, but I am alone again now, how can a house feel so empty, there are so many things I should be doing, bt I cant find the energy/ or cant be bothered, nothing seems worth it now. Cant concentrate on anything.

I rang this morning, he had a bad night and is trying to get out so I wont go in today it will only make him worse, I need to let him settle for a couple of days, I dont know if I am doing the right thing, I know it will upset him if I go in, but it feels wrong to leave him. Oh god why cant they cure this awful disease. I know he is in the best place, and will get the care he needs, but its not helping.

I wish my daughter wasnt so far away.

I am so sorry to hear of your anguish, I wish I could help. My thoughts are with you and hope you will be more able to cope and feel a little better in a few days. By then hopefully Phil will have settled and you can then take comfort in that. It is the disease not Phil, the Phil you knew would not be like this, and he would have told you, you are doing the right thing.. I know how it is hard for you, with your daughter so far away. My daughter is also a long way away, in Florida, I haven't seen her for 4 years, so I know how it feels.
Don't worry about the things you feel you have to take care of, that's not important at the moment, just focus on yourself, and, on Phil settling down. He may be really happy in his new home in a few days. Once this happens you will know you did the right thing and you can have a little time for you, whilst still visiting Phil. Give it a few days to see what happens. It may not come to him staying, they may feel they can give some medication to control his outbursts, just wait and see. In the meantime look after yourself. Do you have any close friends to go to, or, maybe go and stay with your Daughter-in-law for a while. I will be thinking of you and hoping everything turns out well. :)
 

WIFE

Registered User
May 23, 2014
856
WEST SUSSEX
Mabbs - just take it day by day with Phil - even after months my husband still had days when he insisted on "going". As his illness progressed he ceased to know "where" but it was still obviously a cry to be released from what he perceived as some kind of prison. It is a rollercoaster but I found as the weeks went by I was able to compartmentalise the guilt I felt everyday when I left him if not the tears. As to doing anything else - visiting the NH took over my life and I just let it. I am now having to catch up with the garden, decorating and everything else that was put on hold last year. You just do what you feel you can and do not worry, or feel guilty about the rest. My Mantra now and then - What will be, will be. Loving thoughts WIFE (Di)
 

Chuggalug

Registered User
Mar 24, 2014
8,007
Norfolk
I have found having a bit of a clear up and out is helping me cope, but I am not doing too much as it would be admitting he isnt coming home, and I havent come to terms with that yet, I am still hoping that after the scan, he will go on meds that work for him, and I can have him home, with daycare, the kids think he should go into a home, they worry about my safety, and they tell me I need to be strong, well today I dont feel strong, I just feel overwhelmed with sadness, and the tears are falling -again,

Sorry people bad day, after a good visit, how strange os that, he was fine, and just one sentence, was enough to wreck me for the day. I miss him so much,
Don't you apologise to us, Mabbs.I've got this coming, too, and, like you, I'd rather have hubby home. Hate living alone. I'm all right in my own company, but as a married woman, it never feels right when your spouse is away.

Even back in the days when he was away in Romania on aid trips, it was hard going.

Fully understand your sadness. Big hugs, xxxxxxxxxxx
 

mabbs

Registered User
Dec 1, 2014
238
Lancashire
tea party at the assessment centre, went in, Phil went to walk past me, had not recognised me, giggled when I said hello and gave him a hug, not sure if he really knew who I was for a while today. He managed to pack in 3 bits of swiss roll 2 cup cakes and 3 jammy dodger biccys, with his coffee. He was bright and happy, but then he said the dreaded words - shall we go now?

He wasnt happy to find he had to stay, he was peering through the door and rattling it, for a minute or so, while the staff talked him into going to watch the tv, they said dont worry he will settle in a few minutes, so fingers crossed he did. Made my escape. He was definitely better than yesterday, looked calm and cheerful, until the can we go now.

Went to GP myself this morning, to sort a couple of long standing problems, and he sat and talked to me for a while about Phil, must admit I felt better afterwards, his tissue box is a bit depleted. I am feeling a bit more positive this evening, not that things can change, but that poor Phil is in the right place, I can see he has no sense of reality, I think he thinks I am his Mum. Its sad but I can cope as long as he is happy, hate to see him upset. wishing everyone a good night xx
 

LadyA

Registered User
Oct 19, 2009
13,631
Ireland
Mabbs, I do feel for you. William used to cry when I left the nursing home for the first few weeks, but the staff kept assuring me that by the time I would reach the carpark, he would have settled again. He (like a lot of people with dementia, at his stage) lives in the moment. Once I'm out of his sight, he is fine.
Also, I eventually realised with William that his frequent asking to "go away " or "go home " didn't mean actually to come home. Even before he went to the nursing home, he didn't recognise here as "home " and would ask to go home. I came to the conclusion that it's not a place he wanted to go TO, but that he dimly realises things aren't right with him, he knows he's ill, and "go home " is his way of asking me to make it alright again. It's difficult to explain - but I think "home " is, for him and possibly for others, just a representation of "I know I've lost something, and I can't remember what, and that's scary, and I need comfort and reassurance - home! "
Does that make any sense?
 

di65

Registered User
Feb 28, 2013
775
new zealand
LadyA, I do indeed think you have a point, and a very good one at that.

I had my second visit with Lex today. He sat there whilst I walked past him (to give the RN some paperwork) and didn't show much emotion at all when I went back and greeted him. The residents were about to start their 'exercises', so the activities lady told me to join in if I wanted. What a sight, me sitting in an my armchair along with about fifteen others throwing my arms and legs about :D:D. Then we had a piece of cake and a cuppa and sang happy birthday to one of the residents. Once all the fuss calmed down, Lex and I chatted about nothing in particular until talk turned to the inevitable - we'll have to get going soon, where's the car parked. I tried to change the subject for a while until he got really insistent, when "I suddenly needed to find the loo". This was accepted. and off I went and got a caregiver to let me out.
How long does this phase last, or is it the proverbial piece of string?

I'm thinking of you Mabbs, as we travel a similar path on opposite sides of the world :) :)
 

truth24

Registered User
Oct 13, 2013
5,725
North Somerset
Fred seems to accept when I go now. Try to do it while he is dozing or about to have a meal, more for me than for him I think. The carers say that he will sometimes ask where I have gone but seems to accept it when they say I'll be back soon.
 

WIFE

Registered User
May 23, 2014
856
WEST SUSSEX
Makes utter sense LadyA - the constant "lets go" of my poor husband as you say was looking for something dimly remembered but not quite sure what or where. Towards the end of his life he returned in his mind to the house in London where he was brought up so home was not here. Another sadness that has to be accepted. thinking of you all. WIFE
 

mabbs

Registered User
Dec 1, 2014
238
Lancashire
Mabbs, I do feel for you. William used to cry when I left the nursing home for the first few weeks, but the staff kept assuring me that by the time I would reach the carpark, he would have settled again. He (like a lot of people with dementia, at his stage) lives in the moment. Once I'm out of his sight, he is fine.
Also, I eventually realised with William that his frequent asking to "go away " or "go home " didn't mean actually to come home. Even before he went to the nursing home, he didn't recognise here as "home " and would ask to go home. I came to the conclusion that it's not a place he wanted to go TO, but that he dimly realises things aren't right with him, he knows he's ill, and "go home " is his way of asking me to make it alright again. It's difficult to explain - but I think "home " is, for him and possibly for others, just a representation of "I know I've lost something, and I can't remember what, and that's scary, and I need comfort and reassurance - home! "
Does that make any sense?
Hi Lady A, yes it makes perfect sense, the assessment centre is nice but its not a home, I think he will be better once he goes into a home if thats what is to happen, he needs his own space, he is in a dormitory (4 beds) which is locked in the day to prevent people wandering in and out of others rooms, I will be happier once he is in a permanent place, I am coming to terms with the fact he is unlikely to come home, and I think he will be more settled then.
 

mabbs

Registered User
Dec 1, 2014
238
Lancashire
noticing the differences

When Phil was at home, I knew he was deteriorating, now he is in the assessment centre, I see him every other day, sometimes every day, but I can see such a difference, I suppose if you are with someone 24/7 its not so noticeable, but I can see now how bad he is. I see a difference almost every time I go. Its very sad. xx
 

WIFE

Registered User
May 23, 2014
856
WEST SUSSEX
Di - so you get the "where's the car parked" from your husband too. Mine kept that one up right to the end and sometimes nothing would satisfy him until he was loaded into a wheelchair and physically taken to see the car. I tried to make it as near to lunch as possible so that I had an excuse to wheel him back into the NH without too much fuss.

Mabbs - so sad that you are noticing a difference in Phil now he is at the Assessment Centre. It is a horrible illness but you must stay strong for your sake as well as Phil's and do what is best for both of you. I was told that I couldn't cope with husband's medical needs properly at home and would be able to have quality time visiting him in the NH and up to a point that was true. Life will not be the same but if you can find a routine that suits you its not all bad. thinking of you all WIFE
 

mabbs

Registered User
Dec 1, 2014
238
Lancashire
Mabbs - so sad that you are noticing a difference in Phil now he is at the Assessment Centre. It is a horrible illness but you must stay strong for your sake as well as Phil's and do what is best for both of you. I was told that I couldn't cope with husband's medical needs properly at home and would be able to have quality time visiting him in the NH and up to a point that was true. Life will not be the same but if you can find a routine that suits you its not all bad. thinking of you all WIFE[/QUOTE]

I dont think I would be able to cope with Phils needs at home now, not sure how I was managing before, I guess like the rest of us, we just do it, but he exhaustion gets to us in the end, and in my case the worry of the violence al the time, I know he will be better in a NH, I need it to happen, yet dread it at the same time, I would ust like to see him in a nice environment, with some of his things around him, and maybe I could take Spike in to see him as well, and quality time with him for me as well. Review tomorrow, son is coming, managed to get time off work at short notice, such a relief, he will keep me strong tomorrow. xx
 

mabbs

Registered User
Dec 1, 2014
238
Lancashire
had a review meeting at the unit today, and met our social worker for the first time, they need to get the results of tomorrows scan, but they will be re sectioning Phil at the end of the 28 days under a section 3, which means they can keep him up to 6 months, however at the next meeting on the 2nd ( a couple of days before the 28 days are up) they will be assessing his ability to make decisions the Dr says he has no ability at all now, thats not likely to change, so as I have LPA for health, I make the decisions for him, with social making sure its in his best interest (and on the safety side mine as well). 2nd June should get a list of Nursing Homes, and find out how its paid for.

Now its been said, I realise its a relief, I wanted him home for purely selfish reasons, I miss him, but the man I see in the hospital, he needs the sort of care I could never give him, I will have to settle for loving him, and visiting him, and having quality time with him, without the strain of caring 24/7.

Today I believe the last paragraph, tomorrow, or whenever I am feeling low, I will have to re read it, to remind myself, to remain strong.

Wishing all of you the strength to carry on with whatever life is throwing at you today, and all the days to come xxx
 

WIFE

Registered User
May 23, 2014
856
WEST SUSSEX
Sad times, sadder decisions to be made Mabbs. Hope you find a Nursing Home that will accept visits from pets. My husband's welcomed our dog with open arms - in fact she became an honorary "pat" dog. If she became bored during a visit the Carers fell over one another to take her for a short walk round the garden. didn't even have to supply the poo bags - they were on site. One time someone even brought in two ferrets but that was frowned upon and they did not appear again. Hope things go easily for you both - will be thinking of you. WIFE
 

mabbs

Registered User
Dec 1, 2014
238
Lancashire
Sad times, sadder decisions to be made Mabbs. Hope you find a Nursing Home that will accept visits from pets. My husband's welcomed our dog with open arms - in fact she became an honorary "pat" dog. If she became bored during a visit the Carers fell over one another to take her for a short walk round the garden. didn't even have to supply the poo bags - they were on site. One time someone even brought in two ferrets but that was frowned upon and they did not appear again. Hope things go easily for you both - will be thinking of you. WIFE
hoping to find one that will let me take spike in, wont know until after the 2nd the ones I will be able to choose from, there are quite a few in my area, a couple of them specialise in alz/dementia, hoping there will be one fairly close that would be OK.
Thanks for kind thoughts. xx
 

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