How do you all do it?

Discussion in 'I have a partner with dementia' started by SoAlone, Aug 31, 2016.

  1. SoAlone

    SoAlone Registered User

    May 19, 2016
    110
    Female
    Devon
    I have been reading through threads and can feel empathy for and support from many of the things said. My OH is in very early stages following diagnosis and delights in telling everyone including the GP he is 'on top of the world'. GP has agreed to support his request for an assessment licence from DVLA after his licence was revoked and he is now proudly telling everyone he will have his licence back in week!
    I know advice is to go along with random thought processes etc but the mean spirited and spiteful turn of his tongue on me has me constantly on edge. I can't do anything I right, after 30+ years of marriage suddenly I can't cook, clean or look after him and I generally do nothing.
    I work and look after birds and animals he has insisted on having over the years.
    To be honest, and I am sure this will shock and offend you, I don't want to do it any more. If I feel like this at this early stage how on earth am I going to cope in the future. What a cruel person I must be to want to walk away but I do. I can't seem to feel that he still loves me and it is just the illness.
     
  2. marionq

    marionq Registered User

    Apr 24, 2013
    5,744
    Female
    Scotland
    Know the feeling and have certainly been there. Oddly the early stages can be worse when the person is more active and more demanding. You feel you're losing control of your own life and everything that goes with it. This is the time to get things in place "as if" you were going to leave eg POA and wills, Attendance Allowance, council tax discount, your own bank account separate from your husbands where your pension or salary goes in, dividing of any assets. Are you tenants in common to protect your half of the property?

    Try to be hard headed without necessarily being hard hearted. You can keep yourself busy getting things in place just in case it does become untenable.

    A year or two from now you will be in a different place with or without your husband.
     
  3. Beate

    Beate Registered User

    May 21, 2014
    11,623
    Female
    London
    Neither shocked nor offended. Things can get worse but sometimes they can get better the more the illness progresses, as weird as that sounds. People mellow and get compliant, or their mobility is such that they can't wander off anymore, relieving that worry.

    Try to get as much support in place as you can, but don't beat yourself up if you still feel you can't do it. The only one with a duty of care is the state - no person can be forced to look after another.
     
  4. Soobee

    Soobee Registered User

    Aug 22, 2009
    2,734
    South
    I'm sorry it's a difficult situation for you at the moment.

    It may be that your husband's behaviour will change as the dementia progresses, but there is no guarantee it will get any better (or worse) than it is now. In my own experience my mother eventually became more easy going and pleasant company, having been a nightmare before. Others will explain that their loved ones' behaviour changed over the stages of dementia.

    Only you can decide whether to stay or not - have you got any close family or friends to talk it through with? Nobody can make you stay with someone who makes you feel awful, even if it is the dementia causing it. However, you may have to live with a lot of difficult feelings if you do separate after so many years together.

    In answer to your original question of "how do people do it?" I don't know. People just do, in extraordinary circumstances, often meet the challenges and sorrow of dementia whilst they feel they must.
     
  5. Kevinl

    Kevinl Registered User

    Aug 24, 2013
    4,737
    Salford
    Rather than being SoAlone you're far from alone feeling the way you do.
    Loss of a partner is hard but to lose them to AZ is in some ways even harder.
    I'm lucky in that there are a few places I can go that cater for this situation but they're local council initiatives so getting help is a postcode lottery.
    There's a drop in session 5 days a week, a local support centre, AGEUK café, plenty of places to go when you feel this way.
    I think the best first step would be contact your local LA and ask for a carer's assessment to be done for you and see what help they can offer, you should be able to do this on line.
    Asking for help coping isn't a sign of weakness, I wish I'd recognised that earlier.
    K
     
  6. John4Sue

    John4Sue Account Closed

    I am not particularly religious but this gets me through some hard times!

    http://www.beliefnet.com/prayers/protestant/addiction/serenity-prayer.aspx

    I was wondering if she would be better off in care home! It's being pushed at me by a lot of people lately!
    The Sue I have with me this minute I love!
    The other one when she is in other mode ??????
    I should add I was diagnosed with premature dementia 14 years ago her major major strokes some how shocked me back into some form of reality!?!?
    As to birds and animals they just had to go I could not cope!
    You would be sreprised how many partner carers feel like you do at times!
    Now when her family read this they can have another go at me!!!!!
     
  7. John4Sue

    John4Sue Account Closed

    What Carmar says is quite right! Least I feel that!
     
  8. jikkie

    jikkie Registered User

    Aug 23, 2015
    64
    This is so how I feel. There are so many wonderful carers in this group, coping with all manner of things that I know I cannot, or, to be even more blunt, am not prepared to. I also feel resentful about "losing my life" to this - we have a big age gap which probably doesn't help. I also feel very sore because he has told me that he would not care for me, it's a wife's job to care for the husband. And quite a lot of other things besides... some of which have their roots in years gone by, which makes it hard to separate character or personality from AD.

    I am not in any position to offer advice, except get all the legal chores done, keep busy with those....

    I have found I have become very tough about the whole thing, though I suspect when it is "over" and my OH goes into care, I will have a pretty awful guilt trip to ride.

    I have never ever before considered myself a selfish person, so my reaction to everything comes as a shock to me.
     
  9. SoAlone

    SoAlone Registered User

    May 19, 2016
    110
    Female
    Devon
    Thank you all so much. Your advice is good as always and I am so relieved that so many of you have also felt this way. I have a little family, not local and OH has a daughter, but another of my failings:), is that I am not good at asking for help and I am good at appearing all capable and strong. Lots of people offer to listen but then I am overwhelmed by feelings of disloyalty, I worry that I will make others view OH the way I do in these times and that isn't fair.
    As far as legal stuff is concerned we did look at POA for finances earlier but we only have one asset, our home, still mortgaged i am afraid and I am told I can't act for him in this regard and I don't feel able to pass legal control to anyone else.
    We too have a large age gap (17 years) and maybe this adds to the anger that my life is being taken away by this disease almost as much as his.
    Whilst he is happy that he is not ill, I am apparently worrying about nothing and the cause of the problem not the aid.
    Thanks again, I feel the support from you guys is what is keeping me afloat, albeit gurgling from time to time.
     
  10. DixonC

    DixonC Registered User

    Aug 3, 2016
    28
    So alone

    I am also in early stages with husband's AD and after 45yrs his mean comments are hard to take, he has also just had his licence revoked but the DVLA will not reconsider after his memory score of 3/30! my driving is obviously not up to his standards and I have to put up with constant criticism. I would really like help but he doesn't even accept there is anything wrong let alone be willing to have anyone else involved.

    People say to me I need a break and to go out on my own but how do you do that when he even looks for me when I go to the bathroom! Oh well I know we will deal with this as best we can be it is not easy. We have family but they all live hours away. POA being put in place and I am thinking about reorganising finances but he gets so cross when I mention it to him. Feel better for getting that off my chest, thank goodness for this forum.
     
  11. GailE2010

    GailE2010 Registered User

    Jul 17, 2016
    19
    Derbyshire
    Ditto to your feelings

    I echo everything you say so hard to do so much expected so little support thank goodness for this site no need for guilty feelings on here I too could walk away some days and nights and I feel selfish thinking I can't do it and I want my life back and the love of what my life was not this dreadful disease that changes everything no you are not alone a d we will do what we can till we can no longer do it stay true to yourself you matter too no guilt
     
  12. jikkie

    jikkie Registered User

    Aug 23, 2015
    64
    We too only have the one asset, and that's mortgaged!

    I think you still need POA, get it done before it's too late.

    Our age gap is 18 years... I am 64.

    I think your situation is the nearest to my own that I have come across on here, so in a sense I am "pleased to meet you" Please don't take that the wrong way, I wouldn't wish this nightmare on anyone.

    I too have been "strong". Diagnosis was in December 2012, and really the decline only started perhaps end of last year. But now it's accelerating at an alarming rate, which has caught me by surprise.

    I had a small health scare myself, entirely down to stress, and people have been telling me to get a carer's assessment for several months. I eventually succumbed and approached SS at the end of July. It was time. I don't think one notices the toll all this takes for some time, but eventually there comes a point where you realise you have to take care of yourself, first almost, as everything depends on you.

    I have no-one around me. Our daughter and her family live abroad in UAE and won't be visiting until probably next April. Luckily she understands the situation and will support me in whatever I decide, whenever I decide.

    All good wishes, and please keep posting. I will look out for your name.
     
  13. jaymor

    jaymor Volunteer Moderator

    Jul 14, 2006
    12,401
    Female
    England
    I don't think age makes a difference to how we feel. I was just under 60 and my husband just two years older when he had his diagnosis of Alzheimer's. He had had memory problems for a couple of years that we thought were caused by stress. He ran his own business.

    I felt robbed, worked hard, saved hard, brought up And supported two children, saw them settled and now it was our turn. We never got that turn, no retirement for us, I was now a Carer my husband no longer the person he was.

    It was horrendous to start with, me thinking life was over, my husband knowing what was ahead of him because he had watched his Mother progress through Alzheimers. Slowly though we both started to accept and though not the life we planned it was not all doom and gloom and carers do become very accepting. Not saying it is easy because it is not, I wanted to walk away on a daily basis, I am sure we have all felt the same at some time or other. No shame in feeling that way.
     
  14. SoAlone

    SoAlone Registered User

    May 19, 2016
    110
    Female
    Devon
    #14 SoAlone, Sep 1, 2016
    Last edited by a moderator: Sep 1, 2016
    Thank you for your post does seem we are are in the same boat. I feel unable to seek help as a carer at present because OH does not accept there is anything wrong with him. I have a weeks leave from today and after that I think I will visit my own GP and see where we go from there. I find everyone seems to say what he wants to hear - including GP which leaves me alone as the 'bad guy' when I have to draw the line for sanity's sake. Will look out for you too, hang on in there. As I said before this site is my lifeline
     
  15. PalSal

    PalSal Registered User

    I completely understand how you feel. The reality is the early on set and young carer challenges are in ways very tricky stuff and perhaps quite different from those already retired or pensioned. There are huge financial consequences. I agree with much of what was said on TP. behaviors change and the victim becomes less aware. My OH was 49 when diagnosed, I feel I forked over my 50s to this disease. ( and he did too) the difference is I made the conscious choice to stay, as he was once a very lovely man, father, and husband. He is now 63 and I am 62. But I must remember each day that I made that choice- I cannot be a bitter ( but I am quite often) I find I must keep everything in the moment in the day...otherwise it is all too much. But only you can decide if you want to stay.... I have not found it easier other time...just the slow inevitability of it all. I am not sure I stayed for the right reasons, but my youngest son was 11, my others we all at uni so I stayed. They would have considered it desertion of their father. I feared the loss of their affection if I put myself first.



    Sent from my iPhone using Talking Point
     
  16. elizabeth hc

    elizabeth hc Registered User

    Oct 31, 2012
    49
    I was like you a couple of years ago. I just thought I didn't,t need all the abuse all the time but strangely over time OH has become quieter and more compliant . We still have the odd outburst as how useless I am but nothing like it was. Still not easy but much better. I am sure other people understand how you are feeling, try and hang on in there!
     
  17. SoAlone

    SoAlone Registered User

    May 19, 2016
    110
    Female
    Devon
    Thank you elizabeth hc it does seem from the forum that this stage seems to ease as things progress. Just wish this flippin licence thing would go away but I guess he would just replace it with something else.
     
  18. Frederic H

    Frederic H Registered User

    Apr 1, 2015
    75
    Devon
    So alone

    Hi there
    yes life is a sod at times.I found that when my O/H really got bad, and it happened quite suddenly I struggled to cope,how could anyone be so ungrateful and say such awful things and be aggressive I thought, after all I was doing for her.

    So I rang Samaritans and do so on a fairly regular basis, they can do nothing but listen but I found it certainly helps,I have just rung them tonight and feel a bit better having shared my unhappiness bitterness and bad temper with this lady called Jane and it is free 116123-try it !
     
  19. lemonjuice

    lemonjuice Registered User

    Jun 15, 2016
    1,535
    England
    Just wanted to say' Keep Going'

    Over 7 years ago when it became obvious that we were indeed heading down the 'dementia' route I thought and felt much as you did.

    We'd watched a number of relatives get to that final end-stage of dementia and knew what that looked like. Mum had been taking me to the Dr.s for years before and 'passing' the MMSE test to our relief and so despite her continuing 'odd' behaviour we put it to the back of our minds not wanting to face the possibility.
    I was actually very cross when the consultant came right out and told Mum she had Alzheimers, as I knew how she'd react.
    Fortunately she didn't recognise the word and I tended to refer to memory problems which all old people have. That caused enough hassle!

    When she had an attack of arrythmia and was unconscious and transferred to hospital we actually talked with the Dr.s about just letting nature taking its course. When she went on to recover and I was told by one Dr. she could live another 7 years with her dementia but with her heart problems probably only another 5 you may imagine how my heart sank. :eek: I could never cope!

    However here we are 6 years later.
    One copes one step at a time, never believing one will have the strength and yet as each day goes on, days stretch into weeks and years one finds one can. (Emotionally is a whole different case and I've spent much of those years battling depression and crying a lot.)

    Even these past 2 years with Mum having a number of emergencies looking back I don't know how I coped but one does.

    Just remember some days are better than others. The 'saving grace' is that as their memory deteriorates they forget the 'problems/ arguments etc. My mother had some really violent years and yet became much calmer as the condition really set in.

    Someone on here has the phrase, 'Keep on going on' as their signature and that pretty much sums it up and be forgiving to yourself when you don't cope.
     
  20. Florence.

    Florence. Registered User

    Nov 7, 2012
    116
    You're right lemonjuice ... Keep on going on. How do we do it? We dont know, we just do. My husband has vascular dementia and is disabled by various physical infirmities, so it's hard, very hard but I try to get as much help as I can and remember I'm human too when I have a meltdown or snap .. Like, who wouldn't??? Ive found TP, talking to someone I trust and just being kind to myself all,helps through the bad times. I'm not the patient person I once was and when I'm overtired don't take any prisoners but I'm not ashamed. I've got to the stage of "don't like it, tough, walk in my shoes then Tell me". My energy and patience is reserved for my husband. Good luck and hugs for you In Your own personal struggle X
     

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