1. Helly68

    Helly68 Registered User

    Mar 12, 2018
    352
    After I left my Mum at the care home for the first time fully residential, I cried for about 24 hours on and off. It is an awful situation. We were advised to leave her for a few days, which we did and when I visited she was happily gardening with other residents. I was still an emotional wreck. Things get easier over time and my Mum has settled, though sadly the disease also progresses. Everyone is different in terms of the decisions they make and what they are able to do. Do not feel guilty about your choices. Dementia is terrible and nothing prepares you or your family for it. Although it is very hard at first making the move to residential care, I think you have to stick with it for a bit to see how it goes.
     
  2. Dosey

    Dosey Registered User

    Nov 27, 2017
    94
    Just phoned care home for an update. OH is doing well settling in. Has made friends, talking a bit more, eating well, allowing staff to do his personal care.
    While talking to angie(carer) I heard him call her, she said be with you in a wee minute he answered ok clear as day.
    I am now sitting crying my eyes out again. Haven't left the house since I came back from taking him there on Tuesday. Will this feeling ever get better. Am so lost and lonely. X
     
  3. kindred

    kindred Registered User

    Apr 8, 2018
    2,126
    Rose, sweetheart, I know. It is a horrible feeling. Yes, it will get better. Your OH is settling in well. Let your family support you now. It is so hard, I do know, we have loved them for most of our lives. I still tell myself that my OH is just sleeping in a different part of the house. I put a big teddy bear in his bed.
    all thoughts and sympathy, with you. Geraldine (kindred)xx
     
  4. Dosey

    Dosey Registered User

    Nov 27, 2017
    94
    Thanks Geraldine
    Felt really bad today. My son daughter in law and kids came and took me out for an Indian meal (late Mother's Day gift). Was dreading going as we all go there as a family all the time (16 of us) . They didn't ask where OH was thank god. Managed to enjoy the meal, had a wee sad moment at dessert but managed not to cry. Family away home now. Just going to watch tv for a bit, phone care home then try and get some sleep. Can't bring myself to change the bed yet. Touch his pillow looking for him when I wake up. Rose xxx
     
  5. Dosey

    Dosey Registered User

    Nov 27, 2017
    94
    Hi All
    Just a wee update on how things are going.
    Managed to get to the caravan with daughter in law and grandchildren Jack and Lucy on Friday. Felt really strange without Jackie (hubby). Caught up with our friends, who are all really supportive (a few tears ).
    Plans for Mark and Siobhan to visit hubby sister Monday and explain situation with hubby and discuss how to deal with their terminal ill mum.
    Missed phone call from niece Sunday morning, then a text to say mum in law has been taken to hospital didn't think she would make it through the night. She's asking for Jackie constantly.
    Upshot is Siobhan has to tell Michele (niece) about Jackie moving into care. Harsh words were said. Then sister in law texting not happy we have waited 6 days to tell her. Sorry story so long but have to get this off my chest. Was just feeling a bit better and this has set me off again.
    Contacted home for advice re a visit to hospital.
    We went to see hubby a day early on Monday he was happy to see us. Had the biggest smile and said there's my wife and gave me a big cuddle. He was great with the 2 kids first in a long time. Made me feel I could take him home. He has settled well, likes the staff, told me they are all great.
    We agreed to take Jackie to see his mum yesterday. Not an issue with taking him out. He was obviously oblivious to where he was going and didn't recognise any the familiar places we drove pass. Didn't even ask why his mum was in hospital, at one point didn't know it was her in the bed. Mum pleased to see him.
    Returned to CH no problem, in time for dinner, we skipped away.
    Everything sorted with sister in law and phone call from niece, praising me etc.
    Now sisters, brother, nieces, nephews etc all wanting to visit (never came the 7 years he was ill).
    Have said they can visit anytime, not getting into any arguments, my only concern is for hubby wellbeing.
    It's Jackie birthday tomorrow (62). We are all going to see him tomorrow.
    Still feeling sad and lonely, but relieved that he is happy and settled. I guess it's for the best. New chapter in this horrible journey, need to make the best of the time that is left.
    Love Rose x
     
  6. KatieR

    KatieR Registered User

    Mar 13, 2019
    32
    Female
    Everything you're saying is absolutely normal. My husband's in a memory care home, awaiting diagnosis. I'm at home alone and I feel like I'm grieving - cry every time I see something of his. My problem is that when we get the diagnosis report (end of month) there is a possibility that he'll come home. Part of me is terrified of that prospect because he gets terribly agitated and rather nasty at around 5.pm (when I flee) and part of me is telling myself of course he should come home. If he does, I know that's the end of my life as I know it. :-( I would like to find him a nice place to be. But son thinks otherwise, so we'll see. Good luck - and don't feel guilty. You've jumped a huge hurdle and you're on the other side - he's safe and being looked after. *hugs*
     
  7. Dosey

    Dosey Registered User

    Nov 27, 2017
    94
    Hi KatieR
    Sorry to hear your situation. Hopefully you get some answers soon. You have to do what's best for you, sorry your son is not agreeing. I was lucky that my 4 sons could see it was for the best, even though they are heartbroken. They are all very close to their dad, best friends.
    We all went to see Jackie for his birthday last night. 4 sons 4 daughter in laws and 6 grandchildren. He appeared pleased to see everyone, all be it a bit overwhelming for him. Repeatedly telling me he loves me. At one one said to me "you left me" , felt terrible oldest son close to tears. Took a Costco cake and sang happy birthday, left rest of cake for residents and staff.
    When we were ready to leave we asked carer to come and get him. He was going no problem, unfortunately some of family that hadn't seen him were cuddling him and saying goodbye. This unsettled him, and he was trying to get back to us all. He told carer he wanted to be with his sons and brothers, not referred to having children for a long time.
    Upshot is he was very unsettled after we left, told the carer he didn't like her, punching walls, swearing, demanding to go see his mother.
    He did settle and take himself off to bed early. trial and error, feel the visit was to much for him, also have learned you can't say goodbye.
    We were planning to have a visit every day for a hour or so just 2 at a time. Now not sure if this will be to much for him.
    How have others coped with this. Did speak to carer, she said it's still assessment but maybe less visits might be better. Hate to think I am abandoning him.
    I do know this is the best place for him.
    Rose x
     
  8. canary

    canary Registered User

    Feb 25, 2014
    9,664
    Female
    South coast
    I agree that fewer visits will be better, at least until he is settled. You are not abandoning him - you are giving him a chance to learn the care homes routines and to get to know the staff. Perhaps if he only has a couple of visits a week to begin with and, yes, Id agree, no longer than a couple of hours and not too many people, otherwise it is, indeed, too overwhelming.

    Re, not saying goodbye - I didnt say goodbye to mum either. I used to leave my coat and bag in the office so she didnt realise when I would be leaving and I would say that I needed to speak to someone, or do something, or even go to the loo and that I would see her soon (not a total lie as I usually did go to the loo, and I would be back soon - just not that day.....). Then I would just leave. The other thing I would often do is visit and time it so that I would be leaving just about the same time as a meal was ready so that she had something to distract her. (Oh look mum, your dinner has arrived. I must go to the loo - I'll see you soon)
     
  9. Helly68

    Helly68 Registered User

    Mar 12, 2018
    352
    I agree with Canary above, time your exit with something else happening. It gets easier. We have a routine and Mummy knows she will see me regularly so if I go now, she just says see you soon and goes to sleep.
     
  10. Casbow

    Casbow Registered User

    Sep 3, 2013
    983
    Colchester
    I feel your pain. My husband of 53 years has been in a nursing home for 2 years next month. Two years of missing him and feeling bad. Two years of telling myself I didn't try hard enough. Two years of living my life only to visit him. Nothing else matters. Only to see him and make sure he is well looked after. (He is.). I cannot move on. The short break I had last year I left early, and came home. Went straight to see him. My circumstances for having to let him go were very much the same as yours. In the end it was the double incontinence that finished us. One person cannot clean and change another if that person is violent and pushing his helper away. It took three people to do what I was trying to do on my own. Now he is settled and as happy as I could have hoped for. Try to forgive yourself. You could not have carried on for any longer. I am sure he will be well looked after. I wish you some peace now and you can look forward to visiting him. My love to you.xx
     
  11. Dosey

    Dosey Registered User

    Nov 27, 2017
    94
    #51 Dosey, Apr 17, 2019
    Last edited: Apr 18, 2019
    Thanks everyone.
    Managed to go to the caravan with grandchildren j and L on Friday, came home Sunday.
    A and S visited his dad on Friday evening, much calmer visit.
    I wanted to visit Sunday as I felt guilty that I had enjoyed my break with the kids. Did resist going.
    S, L and I went to see OH on Monday mid morning before taking L to nursery in afternoon. Visit went well and we left when he got took for his lunch.
    OHs mum got out of hospital Monday evening after 9 days stay. She is so frail and weak, now has cordia carers coming in 3 times a day for medication and make evening meal/snack.
    Collected OH at 1.30 yesterday took him to see his mum. He was quiet in his own we world, sleeping most of the time when we got there. He did smile when music was on in the car.
    Returned OH to the care home, met our youngest son G at the door. We went in and had a cuppa and chatted.. The carer came to take him for his dinner so we could slip out. He was unsettled refusing to sit and have dinner, calling my name trying to leave. Unfortunately he caught us leaving and it was horrible seeing him so upset.
    I did call later that evening and was told he settled a half hour after we went. I could hear him talking to staff in the background and sounded fine.
    This left me feeling bad about earlier. I phoned home this morning asking if it would be better if I didn't visit today, was told it was up to me, my call. Didn't feel this was helpful, decided to not go today and leave it until tomorrow. I am going away to caravan Friday again.
    Today I have done nothing, just sat feeling bad.
    What have others done to overcome this terrible guilt and feelings of loneliness. It's only 2 weeks yesterday since his admission
    Rose x
     
  12. Martarita

    Martarita Registered User

    May 11, 2018
    112
    . Hi my love I don't know you personally but I'm also on talking point and I've just had to do the same my heart goes out to you my heart is broken and it's the hardest thing I've ever had to do in my life so i really do know how you are feeling ,it breaks my heart every time I have to leave him and like you I wish I just could bring him back with me but I know I haven't the strength anymore I don't really know how to try to move on I feel like you how do you move on from this it's broken me as I'm sure it will have done the same to you , so please try for your lovely families sake as I will have to try for mine ,my Husband is settled in know and I love him with all my heart , But that horrible Alzheimer's has taken my lovely husband away from me .please take care and you will be in my thoughts.Xx
     
  13. AliceA

    AliceA Registered User

    May 27, 2016
    2,142
    Martarita, I really feel for you all, it must be so hard to part. Like many we have had a very long marriage, it is hard to see where on starts and the other finishes. As I said we are not there but my imagination is. I try not to think about it. As you said, for the family one must move on but it is hard to see how.
    Somehow we just have to find meaning in every situation. Take care of yourself, fellow warrior, we are all in this fight together on here. X
     
  14. Dosey

    Dosey Registered User

    Nov 27, 2017
    94
    Hi Martarita
    Thanks for your kind words.
    Yes it is so hard. I do have a lovely family. I am enjoying seeing the grandchildren again with out having to worry about OH kicking off. It's early days hopefully it will get easier. It's great that we have TP to get things off our chest or seek advice.
    Hopefully you will feel better soon too. We go from sadness to guilt daily.
    You take care too. Keep posting. Alzheimer's is such a cruel disease. Love Rose xx
     
  15. Dosey

    Dosey Registered User

    Nov 27, 2017
    94
    Hi All
    It's now been 1 month since OH went into CH. was settling in well at first, but now is becoming distraught when I leave after a visit or having him out.
    MIL (86 in July) has stage 4 stomach cancer diagnosed last April. Not expected to see Xmas. OH doesn't know, MIL doesn't know OH in care. Take OH to visit her once a week as usual.
    On Monday took OH to see his mum, then to our youngest sons house, granddaughter 3rd birthday and another son birthday too.
    Got OH back to the CH at 8.45pm sat with him until he fell asleep. This resulted in him getting up through the night looking for me trashing his room and verbally abusive.
    Had his 4 week assessment review today. He has a permanent placement now. Overall he is ok I appear to be the trigger for him becoming unsettled. He asks for me constantly.
    We have decided to shorten the length of visits and one outing a week (will be visiting mum). Visiting every second day, between myself and 4 sons.
    Hate the thought of only seeing him twice a week, feel I am abandoning him, but know it's for the best.
    Other problem is MIL back in hospital Tuesday second time, was in 6-15th April, heart failure, fluid in the lungs, now heart and UTI. She has not been eating hardly drinking for the last 2months, fear she hasn't got long now.
    Asks for OH constantly, but have been advised by care staff not to visit for a few days to let him settle.
    Has anyone else experienced this and how did you cope?
    Sorry for rant but lying here can't sleep.
    Rose x
     
  16. Dosey

    Dosey Registered User

    Nov 27, 2017
    94
     
  17. canary

    canary Registered User

    Feb 25, 2014
    9,664
    Female
    South coast
    #57 canary, May 3, 2019
    Last edited: May 4, 2019
    This sounds like it was far too much for him, he got overtired and confused.
    I didnt take mum out of her care home at all until she was settled and even then I always made sure that she was back well before 3:00pm when she started sun-downing. I understand that you want to take your dad to visit your mum, but if you do that I think it would be a good idea if you didnt stay long (it will wear your mum out too) and then didnt do anything else afterwards except taking him back to the care home and leaving very shortly afterwards.

    I know that you want to feel that he is still involved with family celebrations, but there comes a time when they cant do it anymore - its too noisy, too many people, too overwhelming and they cant cope. Im thinking that your dad has reached this stage.

    What your OH needs now is peaceful routine. Some mental stimulation, but not too much, so he doesnt get overtired and extra confused. Let him learn the care home routine and be able to relax without too much to tax him.
     
  18. Martarita

    Martarita Registered User

    May 11, 2018
    112
    I'm so sorry for you and your family for what your going through, we did the same my eldest son and his wife and 2 boys it was Easter weekend, we was all looking forward to see him out of the care home but it was so sad he seemed upset at times never took notice of anything or anybody don't think he knew the grandchildren which he loved to be around them , it was the first time he'd been out since going into the care home , I could see he was getting very agitated that was about 3-30in the afternoon,so I suggest we should take him back so he wouldn't get to upset ,but he did it was awfully upsetting,it was just to much for him and so very sad for me and the family , his Alzheimer's as rapidly declined in just a few week ,and now more upsetment he needs to be moved to a nursing care home which I know will be the best for him ,but I really can't come to terms with it all ,and like you I'm going to have to cut down my visits to every other day for sake of my OH and my own health its not doing either of us any good at this moment in time, as I want him to get settled and I have got to accept what is happening to us which I'm struggling with as I think you must be . But we must carry on we only can but try to be very very strong for the sake of our beloved husbands , please take care we know there are people at talking point that really do understand what we are going through . Thinking of you .X M
     
  19. Dosey

    Dosey Registered User

    Nov 27, 2017
    94
    Thank you cannery it's my husband.thank you martirita
    It's so difficult he seems to be settling when I don't visit. So hard for me as I want to be there for him..
    What has happened to my beautiful husband my life long friend my everything.
     
  20. Martarita

    Martarita Registered User

    May 11, 2018
    112
    HO my lovely, I'm feeling everything you are its so very hard to visit and so very hard to stay away ,I really know about how broken you are as I am too my heart aches for him but there's no coming back from this horrible disease which is taking our husbands away , yesterday we had to have a meeting at the care home , about what's best for him now as his Alzheimer's has progressed,and for me to have to listen to what's happening to the love of my life is unbearable , but I realise that the nursing home he probably will be going to will be better for him it will be the care that he needs now , I sat with him yesterday and helped him with his lunch ,and stroked his head and I realised this is all I can do now for him ,is to go and see him and give him all the love that I have . I really don't know if my posts will help you but I honestly do know what you are going through,it's so hard to even try to come to terms with this heartache . My thoughts are with you they truly are . Take Care try to be strong as I am trying.Xx
     

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