A lifelong friend and me

Discussion in 'I care for a person with dementia' started by Palerider, May 19, 2019.

  1. Palerider

    Palerider Registered User

    Aug 9, 2015
    427
    Male
    North West
    To try to help myself I found this last night, which made me think about things a little more. Thought I'd share it, as it did ake me realise I am really struggling with this, no doubt as many have done:

    When you suffer from caregiver guilt, feelings can come on strong and last for a long time—unless you take healthy steps to cope with them. Here are some tips for dealing with guilt over care home placement:

    • Give yourself time and permission to grieve.
    • Acknowledge and accept your emotions for what they are.
    • Seek reconciliation with your parent for unresolved conflicts or old resentments.
    • Shift your focus away from feelings of obligation and toward feelings of unconditional love.
    • Remind yourself frequently that your mom or dad is safer, less isolated, and better cared for.
    • Take comfort in knowing that you did not cause your parent's physical or cognitive impairments.
    • Remember that you're doing the best you can under difficult circumstances that are largely out of your control.
    • Acknowledge the fact that nursing home care is a necessary reality for millions of people, including your parent.
    • Give yourself permission to have a life that isn't totally focused on your parent.
    • Establish healthy boundaries by steering conversations away from attempts to guilt-trip you.
    • Make each visit with your mom or dad as fun or meaningful as you can.
    • Recognize that you still get to be a caregiver, just in a different way.
    • Set up new ways to connect with your parent when you can't be there (such as phone calls, texts, or video chats).
    • Seek emotional support from your friends or close family members, your spiritual community, or groups such as the Family Caregiver Alliance.
    • Consider one-on-one counseling or therapy if your guilt persists despite your best efforts to let it go
     
  2. Palerider

    Palerider Registered User

    Aug 9, 2015
    427
    Male
    North West
    Well I have spoke to family to let them know the situation, having not seen or heard from anyone for weeks now. I was relieved that I did as they, including my brother have actually for once been supportive in what is probably going to be a big change for all of us over the next week or so. The general consensus is that I have done the best I can do and things can't continue as they are. That has made me feel better about giving myself permission to make the inevitable decision. I'm going to leave things for today as tomorrow will be a deciding moment, and I need to somehow distract myself from feeling so apprehensive or at least try.....I may be back
     
  3. AliceA

    AliceA Registered User

    May 27, 2016
    2,232
    I hope you figure out the best solution for you both. It is so difficult, often one seems near a decision then the next day things have changed and we can doubt ourselves. On Friday I wasted four hours respite having a good cry and feeling sorry for myself. By evening when there is no access to help my husband reckoned he needed a doctor. I was figuring it out, he does get sudden chest infections.
    Yes, he had been coughing then he often has bouts. This coming week we have a visit to a home for the purpose of respite, that's a longer story. Saturday I felt near to tears, on and off, I tried to brighten as it was a special day. I felt like cancelling the visit, I had squeezed it in before I have an unpleasant treatment on Friday that entails several days recovery. Every thing seemed too much, today is much better.
    He is still coughing but says it is not too bad, sounded same to me. I do think that our mood is a factor on theirs.
    Sometimes he is stubborn and wants to prove me wrong.
    The visit is going ahead at the moment. Sometimes there is no logic we have to go by gut feelings.
    At this stage if it were a mother rather than a husband I would be thinking about care. Whatever it always has compensations but challenges too. Sometimes I see the point of the toss of a coin. Good luck
     
  4. Palerider

    Palerider Registered User

    Aug 9, 2015
    427
    Male
    North West
    Mmm its is difficult AliceA, very. On some days mum has more clarity and so you think it wil be ok, and then others that clarity is gone. Decision making becomes difficult and in some respects arduous.

    When I walked mum out of the crematorium in late July, 2015 I hung onto her as she realised what she was leaving behind her - the love of her life, -her husband and a life gone by, for a moment she fell into my arms and sobbed. The last of the music played and I looked out across the fields and thought to myself 'what do I do now?'. That was almost four years ago.

    Today I asked my brother to come to the house, and so he did. I broke the news about mum, while she hid upstairs away from him, not knowing who he was anymore. For the first time since dad died I think the reality has hit home with my brother. He left the house tearful, and I wish that I could have done more to not let that be.

    Mum is an only child from the war years and all of her immediate family are dead, apart from one uncle who ran away to Blackpool in the 1930's (Uncle Jack). She has two elderly cousins remaining, both older than her and one too frail to help. One lives locally in the NW and the other retired to Instanbul (after working for British Airways in Rome) in the late 1990's to do journalism and has never been heard of since, he was also my God Father. Mum's only other family besides her children are her sister-in-law and brother-in-law (married), who have always been good friends with mum, they are also in their late eighties now and unable to help other than to talk to on the phone and update them and sometimes I ask for some reflections on how mum might react to things as they arise.

    I don't think anyone ever really knows a person as such, we only ever see 'sides' of a person. As much as dad was a pain when he drank, when he was sober he was a reasonable man, I just wish he was here now because he would be able contribute to a decision that I know in all likelyhood he would have agreed to, but I cannot be absolutely certain of. Indeed AliceA, you maybe right on the tossing of a coin ;)
     
  5. AliceA

    AliceA Registered User

    May 27, 2016
    2,232
    It sounds that the trigger point was the death of your father. Sometimes as a couple symptoms are masked. My sister in laws problem really came to the fore when her husband died. She had always been a bit eccentric bless her, she was always a bit absent minded. So after the funeral it hit us when she said that was a good funeral who died. Later she would not sign a cheque she said her husband would when he came back. Our niece arranged for a home.
    Perhaps with your mother the loss of her life companion was just too much.
    It sounds as if you need to look at places and go with your gut feeling, logic just does not come into it.
    It will have to come I am sure, so perhaps best in your time and not in an emergency.
    We were born in the 30s, so many have pre-deceased us, as you say we only see someone from a narrow angle. I too am planning respite with the thought that a final move may be more familiar when and if it comes.
    Some suggest a reason such as a 'holiday' etc. The truth has angles too so if a love lie helps, it is for the sake of kindness. I do empathise with you. alice
     
  6. Palerider

    Palerider Registered User

    Aug 9, 2015
    427
    Male
    North West
    Hi Alice and thank you for your kind words.

    I was lucky, dad had made me sole executor of his will and also his funeral arrangements, plus he had a policy in the event of his death. So sorting those affairs wasn't big deal in the end, although it is hard when you've just lost a parent and the other clearly has mid-stage Alzheimer's.

    I agree with you in not letting this situation become one of crisis/emergency. My plan was like I have said to get mum more familiar with change gradually until she went into care. There is no reason not to be kind about this, but I also know that many people don't get that chance as situations accelerate and become unmanageable at home for various reasons -this realistically maybe a situation mum and I end up in.

    It may be that repsite care has to be the option here based on best interests, but this is a situation I was trying to avoid. I have however, resigned myself to this now as possible outcome, one thing is for certain,mum can't stay at home on her own anymore. I find myself in alignment with you, that kindness goes along way for both the person with dementia and the carers -so there will be a 'love lie' to help the transition if it comes to that. I am certain if that happens she will deteriorate and won't be coming home again, but I have to accept that at some point this would happen, even if she was gently and kindly placed into care. Another Catch 22. No matter which way we turn there are potential dilemma's.

    I'm still waiting to hear on a provider for a POC or if we need to go ahead on respite care
     
  7. AliceA

    AliceA Registered User

    May 27, 2016
    2,232
    Will be thinking of you.
     
  8. Sarasa

    Sarasa Registered User

    Apr 13, 2018
    398
    Thinking of you @Palerider. I hope you come to a decision that you are comfortable with, which gives both you and your mum the support you need.
    I've just moved mum into a care home and I find your comments about kindness interesting. I feel in lots of ways I haven't been kind to her as she hates being there and feels trapped, and I have to keep lying as to why she has to continue to stay there. To do that I have to be quite emotionally distant from her. But I also know letting her stay in her flat which is what she says she now wants isn't a kindness either. She was very bored and lonely, and extremely confused at times. She was also doing potentially dangerous things, and worrying the neighbours with her behaviour. At least she is blaming my husband rather than me for where she, so she is pleased to see me.
     
  9. Palerider

    Palerider Registered User

    Aug 9, 2015
    427
    Male
    North West
    Thanks Sarasa,

    I think I will feel the same way as you, but I guess that kindness is not always an all round positive experience. Some times there is pain involved in order to good, for me I struggle to justify it, but one day I will have to I think. I'm in a similar situation with changing behaviour, mum gets very lonely now and she doesn't have the confidence she had, even six months ago. Even though I stay with her, I can see the change in how uncertain she is about everything as her world shrinks. I to seem to have to distance myself emotionally in order to find some clarity in making decisions -the ties that bind us, perhaps?

    I am going to need your courage Sarasa in the coming weeks, so thanks for sharing. Hope your mum stays happy, even though she blames your husband.
     
  10. Palerider

    Palerider Registered User

    Aug 9, 2015
    427
    Male
    North West
    Well today the SS has contacted me and asked if I would like to open an account for mums LA funding plus her contributions, so that I can organise her POC. The drawback is that if the spending goes over the LA's rates I will have to top-up. I can't help feeling mum's social worker was inbetween the lines of her email telling me not to agree to it. I have said no, its not a responsibility I can or am willing to take on at this time, given that I already have a wide array of matters to sort as well as myself. Plus financially, I would not be able to cover any top-ups as well as keep things running here.

    Yet again I am feeling a little annoyed as the SS have said they will now go out to external providers -something they said over two weeks ago, or am I seeing things when I read emails these days??? I can't help feeling I'm being fobbed off here by a system that we all know is broken. As well as plan A and B it seems I also need a plan C, D, E and F and preferably a lotto win.

    Don't get hopes up Pale, sail a steady course and ride out the waves......
     
  11. canary

    canary Registered User

    Feb 25, 2014
    9,862
    Female
    South coast
    I agree about not doing any top-ups @Palerider - the LA is legally bound to find at least one provider who will accept the LA rates. If they can find one at the rates they are offering then they will have to up their rate.

    Be careful, though, of refusing to organise her finances. You dont have to do this, but do be aware that if you do refuse, then the LA is likely to apply to the Curt of Protection for deputyship and a third party (appointed by the court) would have control of all her finances, possessions and assets.
     
  12. Palerider

    Palerider Registered User

    Aug 9, 2015
    427
    Male
    North West
    Hi Canary

    I am mum's LPA for property and finacial affairs, I have not refused to organise her finances, but I have said that I don't wish to manage the direct payments (DP).

    Unfortunately I don't have LPA for health and wellbeing, as this was mums instruction to her solicitor
     
  13. Palerider

    Palerider Registered User

    Aug 9, 2015
    427
    Male
    North West
    I should add there is alot of the passing of the old 'buck' here. As I don't have LPA for health and wellbeing I can't make any decisions on where mum resides without her consent. Of course mum's answer to everything is 'no'. I actually don't understand what the problem is, its clear things are changing. I have to hand this over to the care providers and the SS in order for a decision to be made and thats the problem. I also need time to sell the property, find myself somewhere else to live and sort out an array of matters that will need closing.

    In ten years we have not asked the state for anything or money. I had least expected some help while I sort matters out, but clearly even that is too much to ask. I am seriously at my wits end with this THIS!!!
     
  14. canary

    canary Registered User

    Feb 25, 2014
    9,862
    Female
    South coast
    Good, Im glad of that. I was just offering caution in case that it how the LA interpret it.
     
  15. Palerider

    Palerider Registered User

    Aug 9, 2015
    427
    Male
    North West
    No worries :)
     
  16. Palerider

    Palerider Registered User

    Aug 9, 2015
    427
    Male
    North West
    By late last night my anxiety got the better of me and I had a mini meltdown on my own. I don't know if anyone is experiencing or has experienced this, but all the things I need to do but can't for various reasons were racing through my head -it was just horrible.

    I'm still feeling quite shaky this morning. This isn't helping me get by day to day at all, its torture.
     
  17. canary

    canary Registered User

    Feb 25, 2014
    9,862
    Female
    South coast
    (((((((((((((((((((((((hugs)))))))))))))))))) @Palerider
    Panic attacks are horrible.
    Some people suggest making lists so that it is on paper rather than in your head. It might help.
     
  18. Palerider

    Palerider Registered User

    Aug 9, 2015
    427
    Male
    North West
    Thanks Canary.

    I've just got of the phone to mums social worker. Good news -finally we have a POC morning and afternoon with a build up to luchtime as well. I know its not a complete solution but it buys me time to sort mums affairs out here as well as myself and get mum used to having carers as well as a gentle move into care -which I fear is fast coming
     
  19. canary

    canary Registered User

    Feb 25, 2014
    9,862
    Female
    South coast
    Im glad something has improved :)

    I remember the time before mum moved to her care home and I was pulling my hair out. You are doing OK, so cut yourself some slack
    xx
     
  20. Palerider

    Palerider Registered User

    Aug 9, 2015
    427
    Male
    North West
    #120 Palerider, Jun 5, 2019
    Last edited: Jun 5, 2019
    Today having felt slightly more relieved we went for a drive and I had to get new electric hedge shears. This is because I was cutting the hedge with the old ones and mum distracted me so much I cut through the electric cable.

    On the way home we ended up being involved in a road traffic collision. I went through the lights on a roundabout (on green) and had to stop for a traffic police car lights and siren going. The guy behind me was watching the police car and didn't see me stop, consequently he hit the rear of my car.

    Luckily we we're all ok, the police officer was great, he said I had no choice but to to stop. Its now being investigated as a police collision. Mum was fab, she said 'oh bloody hell, is it our fault?' . 'No I said mum, its not our fault' on which she proceeded to ask the police officer if he was ok and if she could do anything for him. He chuckled to himself.
     

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