Tips for coping alone - when partner moves into care.

Discussion in 'I have a partner with dementia' started by Sarahdun, Aug 22, 2019.

  1. postigen

    postigen Registered User

    Nov 15, 2013
    28
    warrington
    Hi not been on for a couple of years. My husband has been in care now for 18 months. The very worst decision I've ever had to make. Don't know how I got thro the first year after 40 yrs together. Constant meltdowns, they do reduce. The guilt is overwhelming. I just try to keep busy and have supportive family and friends. There is so much support in the community when you are classed as a carer but nothing now. It's just a slow bereavement and we don't fit into any category. I don't think it gets easier you get used to it and do the best you can. Obviously you benefit from being able to sleep etc. The last few months caring was hard, now it's a different hard.
     
  2. PJD

    PJD Registered User

    Apr 4, 2019
    14
    Today I had a visit from a care home manager to assess ny wife`s needs prior to a weeks respite care. I`m told I need a break after two years of caring with just half a day break and the odd hour. That may be true but it does not assuage the anxiety about how she will react in the home particularly at bedtime in a strane room without me to reassure her so she feels safe. It is very difficult to overcome the feeling that you are deserting the one you love so I still don`t know whether I will let her go. She has quite advanced alzeimers talks non stop about mum and dad and school and church, doesn`t eat much or change her clothes or wash so it is a daily battle though I now don`t stress over these traits or there would be pointless one sided arguments. But it is an enormous decision to move to care even for a week. Other peoples experiences are a help to know but I would miss her.
     
  3. Roseleigh

    Roseleigh Registered User

    Dec 26, 2016
    149
    "Today I had a visit from a care home manager to assess ny wife`s needs prior to a weeks respite care."

    What does this involve? My husband is due to have a similar visit with a view to a weeks respite care.
     
  4. Roseleigh

    Roseleigh Registered User

    Dec 26, 2016
    149
    I too have some concerns about night time, as this 'sundowning' is when he gets most confused.
     
  5. Herewego

    Herewego Registered User

    Mar 9, 2017
    95
    You are right - I have been very busy since Husband went into care, some externally imposed and other self imposed, but I feel somehow I need to recharge - just not quite sure how I recharge while still getting on with the day-to-day.........
     
  6. AliceA

    AliceA Registered User

    May 27, 2016
    2,340
    It must be, this is the dilemma the challenges change but there are still challenges. Be kind to your self.
     
  7. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,327
    Kent
    There`s a good period of adjustment needed before most of us are ready to get out and about.

    Out and about to what?
     
  8. AliceA

    AliceA Registered User

    May 27, 2016
    2,340
    That's how I feel now so I cannot see it will be any different if H goes into a home. People say I need my life back, what life this is my life! People do not say it to young parents. I do get tired but I do not think joining everything going will help that.
    I must go to sleep, it seems hot and I was dry, everything looks peaceful. So I will sleep while I can.
     
  9. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,327
    Kent
    I just want to say after five years of really being alone, with no one to visit or fret about I have finally been able to find a life which suits me.

    Most of it revolves around Tai Chi/Qigong and Meditation groups. The people I meet are on my wavelength and the social aspect is there but undemanding.

    Other times are taken with seaside walks. I`m so lucky to live a 15 minute walk to the sea front. There is a mixture of tourist attractions during the weekends and holiday seasons and peace and quiet during the week and winter months.
    I`ll be going to Ramsgate today to watch kite surfing. I`m sure it will be pleasing to the eye and pleasing to the spirit.

    And there are precious family times. Not too many because they are all working and lead busy lives but they are on hand should I need them.
    Next month two of my grandchildren are coming to London with me to see the musical Fiddler on the Roof.

    My husband went into residential care in 2010. He died in 2014. I`m not saying it is easy but, a certain quality of life can be found.

    I`m still with those who are struggling, which is why I`m here on Dementia Talking Point. Dementia changes our lives as does all loss. Very few couples die together unless they are in an accident. For most of us, one is left behind.

    It`s not a good place to be but it can be tolerable.
     
  10. Philbo

    Philbo Registered User

    Feb 28, 2017
    662
    Male
    Kent
    #30 Philbo, Aug 25, 2019
    Last edited by a moderator: Aug 25, 2019
    I’m in Ramsgate and whilst my wife is on a 6 week assessment stay, I am getting back to doing a bit more walking. Literally, 5 mins from home and I am on the cliff top and another 10 mins takes me to the harbour.

    I find it relaxes the soul in these difficult times, as I cannot see her coming home as her mobility has deteriorated rapidly in these last 3 weeks.

    Hope the London trio goes well.

    Phil
     
  11. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    1,322
    East of England
    And very glad I am that you are still on DTP to keep our spirits up and give helpful advice, thank you! I find this comment very poignant and timely.
     
  12. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,327
    Kent
    Thank you. I hesitated to post worrying some people may not be ready to hear this.

    Thanks Phil.

    I`ve decided against Ramsgate today It is far too hot and the one negative about most seaside places is lack of shade.

    My garden umbrella snapped in two during our last gale and my son took me to get a new one this morning. Even in the garden, under my new umbrella it`s a bit too hot for comfort. At least, at home, I can come indoors to cool down.
     
  13. AliceA

    AliceA Registered User

    May 27, 2016
    2,340
    Your advice is so sensible, watch out I may come to live with you :):):) namaste .
     
  14. Sarahdun

    Sarahdun Registered User

    May 18, 2014
    390
    Courageous enough to log back in this morning and see all the very different and very helpful replies here. Apparently my husband has been playing football, dancing and making friends in the care home. He misses me and is glad when I visit. He no longer seems to remember our home and seems happy to return to the care home as 'home'. He has been there long enough to be able to take me for a 'walk' around the corridor (which is thoughtfully designed with lifesize scenes of local familiar places). We continue to go out for car rides, walks and coffee.

    So my only two tips are - it takes time - lots of time - and that for my OH at least regular trips out and returning to the care home (never coming back to our home) seem to have helped him to settle. But the most important thing is all the care he gets there which seems to have made him so much calmer than he was at home.

    I will never stop feeling guilty that I could not achieve this any more at home - and I regret that I couldn't find anywhere more local where I could just pop in for short visits. But I know I am not alone (everyone in his new place seems to have moved long distances to be there - several much further than us). Perhaps eventually I may move myself. We'll see.
     
  15. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,327
    Kent
    Why feel guilty. You have done the best for your husband and his needs are being met, in a special place with experienced people. You are the one who is struggling so please be kinder to yourself.
     
  16. Sarahdun

    Sarahdun Registered User

    May 18, 2014
    390
    Thank you @Grannie G . I also liked your point about drifting, very much. I have encouraged myself to drift for a month or so now but when the autumn starts I will start looking to refire the engine and start sailing somewhere. I feel otherwise I will have 'wasted' his time in the home and my remaining 'youth' (relatively speaking).

    Guilt - why do I feel guilty?

    1. Because I love my husband and have been entirely faithful for 40+ years. We had a great family life together. Hard to walk away now. Despite the dementia he is still basically very kind.
    2. Because he is 'young' and physically fit (if declining a little even in that way now). So being inside all day seemed less than ideal. I am learning otherwise.
    3. Because I can keep him doing familiar things (from looking at books...... to peeing in the right place!!) that others cannot.
    4. Because he is going to live for a long time and the cost of the care is eye-watering and I have no idea how we will cope. Perhaps I should have fought on at home a little longer to save money.
    5. Reading TP and imagining that others are doing better!!!

    All these things go around in my head like a washing machine.

    I know I shouldn't feel guilty because:

    1. If I am honest I was beginning to dislike and resent the person my husband had become. Always agitated, demanding and sometimes angry.
    2 Because I am 'young' and physically fit but not enough to look after his increasing emotional and physical needs 24/7.
    3. Because all the things I tried to do with him were becoming less meaningful (even meaningless) for him. I was probably doing them more for me.
    4. Providence will take care - somehow.
    5. TP is a great source of comfort - knowing that others experience the same.

    Another few loads in the washer!!
     
  17. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,327
    Kent
    There are always pros and cons. Nothing is ever perfect. It`s about a realistic compromise.
     
  18. AliceA

    AliceA Registered User

    May 27, 2016
    2,340
    Dearest Sarahdun, you really are so brave, you may not think so but you really are.
    I am going through the stage before and looking at options, your post has really helped.
    The distance interests me, it is a real stumbling block after 63 plus years together and having no transport, no public either. It is easier to get a lift if nearer home.
    Moving is not really an option as I have family near and I can still be useful emotionally.
    By the time I planned sold and moved my husband may be moved. My husband has physical issues too.
    This is a point to consider. As you say never hurry, take time.
    I wish you well, xxx
     
  19. AliceA

    AliceA Registered User

    May 27, 2016
    2,340
    I agree, we have to let go, high ideals can be so unrealistic they become our prison.
     
  20. Sarahdun

    Sarahdun Registered User

    May 18, 2014
    390
    I think that is very true. I have seen it happen to others - and I can see how it very easily could happen to me too.

    You have such a good way with words!
     

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