1. Expert Q&A: Protecting a person with dementia from financial abuse - Weds 26 June, 3:30-4:30 pm

    Financial abuse can have serious consequences for a person with dementia. Find out how to protect a person with dementia from financial abuse.

    Sam, our Knowledge Officer (Legal and Welfare Rights) is our expert on this topic. She will be here to answer your questions on Wednesday 26 June between 3:30 - 4:30 pm.

    You can either post questions >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll answer as many as we can on the day.

  1. twinklestar

    twinklestar Registered User

    Sep 14, 2014
    84
    Since my last posting I have returned to work. This is the last week of my phased return. I am feeling much better than I did though I have to admit that I think it will take me a long time to get to where I want to be. My time away from work and, indeed, my phased return has made me see life in a new way. I know there is a new life out there for me. The question is just where and what.

    I am totally at ease with mum being in full time care. I honestly know it is for the best. Being a carer is tough but it is also tough when it stops. You have to adapt to a new life. I would be interested to hear from those who have been through this.
     
  2. jaymor

    jaymor Volunteer Moderator

    Jul 14, 2006
    12,237
    Female
    England
    My husband went into a nursing home three years ago. I had looked after him for 7 years on my own before this. When told that his needs were too great to be cared for at home any longer we worked long and hard to find a nursing home that could cover the care he needed. He needed 1:1 care 24 hours a day. We were lucky and found a wonderful nursing home that has given us as a family as much care as they have my husband.

    Caring continues, it will never stop but the actual day to day care is done by the carers and the nurses. I get to do the nice bits of caring, sitting holding his hand, listening to music, having coffee with him, sitting in the garden with him, the truly nice things that when at home there was not that much time to enjoy.

    I am at present on holiday for a week with two wonderful friends that I met through dementia, the best kind of friends, they understand. I know my husband is well looked after and I can relax. The worry is still there, it will never go away, I visit daily but every now and again I can get some ' me ' time and not feel guilty.

    The change from full time carer to assistant carer takes a while to adapt to and is not an easy road but we get there. I hope you soon get to the place where work and caring become as it should be, a comfortable place to be.
     
  3. irishmanc

    irishmanc Registered User

    Jan 14, 2015
    64
    Manchester
    Jaymor is right - the caring never stops but we all have to adjust to new circumstances when our loved one finally goes into care. Both of my parents went into the same nursing home 9 long months ago. As I live in the UK and they live in southern Ireland, this was a hard decision as I cannot visit daily.
    Sometimes, it's hard to see how much they love and depend on their carers but I am slowly learning to adjust and not to be too hard on myself as a result of the decisions I had to make.
    I didn't take any time off work and I often wonder if I did the right thing. I suppose I worried that if I did take some time off, I would find it hard to go back.
    I'm just starting a period of being able to use my new legal powers to sort out their finances and make sure that they are looked after securely for the rest of their lives. I think I would have found it very hard to do that if they were both still at home.
     
  4. Quilty

    Quilty Registered User

    Aug 28, 2014
    1,056
    GLASGOW
    I agree. There should be a guide to help Carers adjust when their loved ones go into full time care. Its a huge shift. I feel like I am in recovery after a major trauma, as the last 2 years have been hard, and the last 6-9 months basically unbearable. It almost broke me a few times. My health and job have suffered along with everything else that mattered. Friends and hobbies have been dropped. Relationships strained to breaking point. My OH does not understand how rattled I feel and that I should be back to normal now.

    With a mother in a care home how can life every be normal? The thing that sustained me what my Dads voice in my head saying "Nothing is forever".

    Just keep going and be kind to yourself. Give yourself little treats even if its only 20 minutes sitting in the sun with a cup of tea.

    Love to all still caring unaided and those who had to let go.
    Quilty
     
  5. irishmanc

    irishmanc Registered User

    Jan 14, 2015
    64
    Manchester
    Very well put, Quilty!!
     
  6. patilo33

    patilo33 Registered User

    Oct 12, 2011
    255
    Scunthorpe
    In recovery

    Well put Quilty. ' in recovery after a major trauma' was exactly how I felt. This could have been due to the stresses and strains leading upto the admission into a nursing home, but also the feeling that I'd let my mum down and how would she cope.
    Counselling helped me in the early stages but mum settled so well in the nursing home that I needn't have worried.
    Two years on and I know it was the right thing to do. The fact that mum has not been in and out of A&E, as she did when I cared for her, shows that she is well cared for. Having had her 90th birthday this year, she is doing all right. For me, a major makeover took place.
    It is tough in the early days though. Keep strong.
     
  7. chrisdee

    chrisdee Registered User

    Nov 23, 2014
    171
    Yorkshire
    Dear Twinklestar, you have identified a very real problem here, one which is subject to
    personal circumstances, temperament, resilience and indeed what is happening with the caree too. When my Mum went into care, it was not quite the relief I though it would be as there still seemed to be things to worry about, for me at least. All I can say is that boring expression, it takes time. Time to adjust and time to let go of the role. Even if its an unwanted role, we get used to it and to cutting other things from our lives, and its wierd when it stops, however welcome. I used to think that the problem was very largely in my head - if its the same for you then do try to get a break away or a holiday, I prescribe headspace and lots of it!
     
  8. Pete R

    Pete R Registered User

    Jul 26, 2014
    2,046
    Staffs
    #8 Pete R, Jul 1, 2015
    Last edited: Jul 1, 2015
    I totally accept that Mom is better off in the NH and much more can be done for her there than it was possible for me to do at home, although there is not a day I do not wake up thinking I could cope and have her back.:rolleyes:

    However how do you others cope with being away if something happens and your LO is admitted to hospital?

    A few weeks ago when Mom broke her collar bone no one from the NH could go with her to A&E. I was at work and could not get there for a few hours. Mom was totally oblivious to all around her, she had not been fed/watered or her pad changed. Luckily she was discharged but if admitted I can only imagine how emancipated and filthy she would have become.

    This worries me terribly and prevents me from going back to my previous career where I may be uncontactable for weeks at a time.
     
  9. mavis123

    mavis123 Registered User

    Dec 2, 2014
    9
    I totally agree with what's been said

    My hubby had to go into care last September I had given up work and looked after him for the last couple of years .I still have my dad aged 92 in another care home fortunately he is happy and has all his buttons my mum is 85 and lives alone within a few minutes of me.it is difficult to describe the feeling of desolation I felt my husband was just 64 I am 60, I hit a really low point at Christmas and sought counselling which really helped put everything in perspective. The worst thing to come to terms with is the loneliness even though my husband was aggressive demanding with dementia I still miss the companionship.
    However , I went on holiday alone not easy but necessary and I have also moved to a much smaller property just a couple of weeks ago and I love it.I visit my husband nearly every day and dad who understands my demanding husband and mum I visit twice a week.

    I feel I'm beginning to get my life back even though I'm constantly visiting one or another I still get some time to myself and beginning to feel a lot better.
     
  10. astra

    astra Registered User

    Jul 2, 2014
    55
    My other half went in for restbite four weeks we eventually took the opportunity on the advice of social workers and con nurse to make it permanent. So far all is going well but I can't get rid of the guilty feeling that I have let the oh down. Every one tells me that it wS the correct way ahead and I know in my head they are all correct with the statement but I still don't like it. You cannot for one minute forget what has happened it's the last thing you think about at night and the first thing you think about when you wake up. People say it will get easier with time but I don't think that isossible I hope I may be wrong. Anyhow all my best wishes and I do know exactly how you feel
     
  11. Margaret938

    Margaret938 Registered User


    hello Jay.
    I have just been reading your reply, and am pleased to see that you are on a weeks holiday, and enjoying some relaxing time. Your visits are very much like mine, with George. I still have some wonderful visits, and enjoy every minute with him every afternoon. Making the most of our time together, and he always gives me the most wonderful smiles. It is nice to be able to take him outside to the garden and enjoy some fresh air. Often think about you.
    Love Margaret x
     
  12. LadyA

    LadyA Registered User

    Oct 19, 2009
    13,454
    Ireland
    I've only just seen this thread! My husband went into full time care last September, after a truly terrible time. I had been caring for him for several years at home, and had been determined to keep him at home, but just couldn't - it was no longer safe for either of us. I started a thread at that time about starting this new phase of our lives, he in the nursing home and me at home on my own, called "Forward Ho!" http://forum.alzheimers.org.uk/showthread.php?74619-Forward-Ho! The thread is still going, with lots of input from others, exploring both my husband's new life in the nursing home, my life at home without him, and of course the guilt and dealing with that.

    I have found that when those times strike that the "guilt monster" whispers in our ears, it helps to remind ourselves exactly why the decision was finally taken to go with full time care. And of course in our case anyway, it helps that my husband so obviously thrived with the care he was getting. We all want our loved ones to have the very best care possible, and so often, we struggle on for far longer than we should trying to do it all ourselves. But so often giving them the very best care means letting others do the day to day caring, the personal care, the feeding, the struggling to get fluids in etc. and then we can often have more quality time with them.

    But it's never an easy decision and never an easy transition.
     
  13. Spamar

    Spamar Registered User

    Oct 5, 2013
    6,839
    Suffolk
    Very similar to Astra. OH went to respite, then stayed. Since then he has gone downhill and I was struggling before he went in ( I have health problems of my own which is no help).
    I know he is better where he is, but I have spasms of not liking it! And, of course, it is my fault he is somewhere he doesn't like, and he will take it out on me. Never know what mood he dill be in when I get there, so visits may be a few minutes or two or three hours. No hand massages, drinking coffee in the sun, no conversation. But it was just as bad when he was at home!
     
  14. Emac

    Emac Registered User

    Mar 2, 2013
    171
    Letting go of Caring

    I wonder if part of the reason this is so difficult for everyone is that we confuse caring with loving? It is not always practical, reasonable, fair or appropriate for a family member to provide the level of care needed for a relative with dementia, and as the disease progresses it becomes less and less doable. After all in a care home there's a fresh shift of carers every 8 hours or so. Imagine the outcry if care home workers had to work 24hours a day 7 days a week as a relative caring might do for a loved one?! It's not a reasonable ask is it? Yet somehow we think we as wives, daughters husbands and sons should be able to do it. You would have to be superhuman :D When the needs are 24/7 and you can no longer meet them the caring and loving thing to do is to find a suitable home to give your relative what they need in terms of care. Then you can go on being the loving wife, husband, daughter or son you always were and as the other post said doing the nice bits. There will be more time for loving when the caring duty is over. That's what I think. However when we actually reach the stage where my Mum needs residential care I may have to rely on the good people of this forum to remind me!;) of that
     
  15. mavis123

    mavis123 Registered User

    Dec 2, 2014
    9
    Letting go of caring you are of course absolutely right although my heart wanted to continue caring at home my head knew the truth that I couldn't give the care my husband needed and although I still feel guilty and that in some way I let him down it doesn't change the fact that he's better off with nursing care and I have to live my life as fully as possible.
     
  16. hisstessa2

    hisstessa2 Registered User

    Feb 19, 2015
    12
    USA
    And I really thought I was going out of my mind also after I put my mother in a rest home. It's been 2 years and I am still trying to regain my confidence, memory and stamina. It just beats you down. I had lost all my friends and still barely go out. Glad I'm not alone on this one!
     
  17. 2jays

    2jays Registered User

    Jun 4, 2010
    11,480
    West Midlands
    I hadn't thought of it that way before, but I think you are so right xx






    Sent from my iPhone using Talking Point
     
  18. Vancouver

    Vancouver Registered User

    Feb 24, 2015
    6
    My mum is in a care home now

    Hi ... I think the guilt is the worst. after trying to look after mum and working full time I realised I was sinking and so was my mum. Mum ended up in the hospital because she could not walk and her dementia was really bad. Eventually mum ended up in a Temp care home which is wonderful but this is just a holding place til a home with 24 care for dementia becomes available. I said years ago I would never send my mum to a care home and it has happened. I go every day except for Sautrday. I feel guilty too not going on Saturday.. but I need a day to catch up on home chores etc. I love my mum so much ..mum is the first person I think of when I wake up and the last when I close my eyes. Mum has been there since April 27th and is settling in. It broke my heart when mum asked me when she is going home. However since my mum has moved here she does recognise me as her daughter now and not her sister. Oh what a terrible situation to be in and I feel for everyone. I know in my headl this is what needs to be done. But no matter what I say to myself the guilt is always there floating in the background. Mum is settling in at the temp care home and I just pray when the council finds an opening that this won't upset her too much... My mum has and still is an ispiration to me..her strength keeps me going.... This is a hard road for all involved with this terrible illness... good luck everyone x
     
  19. Lizziedalia

    Lizziedalia Registered User

    May 25, 2011
    16
    Greater London
    Hello, hello :) What can I say ? When my mum went into a nursing home, what I missed more was the privacy and freedom of our complicity. Like yourself, I had to re-organise part of my life to decide how to maintain this fluid communication with my mum in her new environment and make sure that she knows that I am still here for her, as you have to adjust to the nursing home life while keeping the quality of your communication with your parent. So I took it in various steps over the first year, such as: to define a shedule of regular visits to my mum/ to insert back into my personal life what I used to do (work, friends, family, activities, ....)/keep some flexibility/spare free time (just in case). Indeed one sees life differently after caring for a loved one but this is a "plus" enriching who you are and you are still you. I would say : treat yourself with care and patience. Indeed everyone is different. Hope this helps a little bit. All the best, Lizziedalia.
     
  20. hrryluvsu

    hrryluvsu Account Closed

    Jul 16, 2015
    1
    #20 hrryluvsu, Jul 16, 2015
    Last edited by a moderator: Jul 16, 2015
    Hugs to you Lizzie. And I agree- it's very important to keep letting them know that we'll always be there for them. We moved my mom to a beautiful adult assisted living facility in Idaho last month. It's been very difficult for the past months, both for me and for her, but I've been making regular visits, and she's starting to like the activities there. It's a beautiful place, and we are trying to relocate closer to her so that I can visit her from time to time. What's most important here is that we understand that this i what's best for her. Hope your mom stays healthy and happy :)
     

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