1. Wifenotcarer

    Wifenotcarer Registered User

    Mar 11, 2018
    244
    Central Scotland
    After 5 years of being mainly housebound with OH because of his Dementia, I am now able (because he moved into a Care Home 8 weeks ago) to resume some of my old activities, attend meetings and events. Yesterday, I helped to organise and participated in an event where I met most of my fellow campaigners/activists and must say I got the warmest of welcomes from them all, though blank looks from the more recent recruits.

    However, - Why did everyone I spoke to have to assure me that I must not feel 'Guilty' about putting OH into a home? Every single one felt the need to say that I had 'done the time' and should now reclaim my freedom, etc. etc. Now this does not chime with my feelings at all. I do NOT feel in the least bit guilty. OH is in a home because he requires 24/7 care and safeguarding, which had become impossible for one wee, sleep deprived, wummin (me) to provide. I have not failed him, I have fought hard to secure the best possible place for him, pop in regularly and have quality time with him, take him wee treats, join in with activities, go for wee walks and attend to problems such as missing hearing aids, repeat prescriptions, finances, etc.etc.

    Why then does everyone assume that my caring life is behind me and that I need reassurance that I have 'done the right thing'?? It has left me wondering if I am somehow abnormal and uncaring, or is it just the old fashioned belief that putting your loved one into permanent care is the ultimate sin?
     
  2. Louise7

    Louise7 Registered User

    Mar 25, 2016
    1,212
    You only need to look at the many posts here from those who feel guilty about someone they cared for going into a home to see that it is a common view. There are however also many on this forum who don't feel guilty about putting someone into a home, where they are safe and having all their care needs met. Just as a person with dementia is an individual so are carers and all views are valid, even if they differ.

    A caring role doesn't stop when someone goes into a home but unless they have experienced it themselves well-meaning individuals will not understand what a carer is feeling. People make assumptions and say what they think will make someone feel better. You are not abnormal or uncaring at all. Taking steps to ensure that someone is safe and well cared for is not a failing.
     
  3. canary

    canary Registered User

    Feb 25, 2014
    10,524
    Female
    South coast
    I think this sums it up.
    I think it is good that you dont feel guilty that your husband has moved into a care home - you are right that you can then do the nice things with him and not the hard, heavy, hands-on stuff. The fact that you doing this shows that you are not being uncaring, just realistic.

    Many people, however, do feel a terrific amount of guilt, which is usually misplaced. Im guessing that the people who say this to you are probably the ones who felt guilty themselves
     
  4. Lawson58

    Lawson58 Registered User

    Personally, I think your attitude is a very healthy one and I hope you continue to enjoy the time you now have to do some of things that are important to you.

    Quite often, the family or carer will make a promise not to put a person into a home and when the time and necessity comes for that to happen, there is a feeling that they have abandoned them. I have told my husband that I will never abandon him but that doesn't mean that I would not put him into care if needed.

    Do you get the feeling that when people tell you that you've done the right thing that they are in fact making some justification for when they might themselves have to put a loved one into care? And people often offer these comments when they are trying to be kind and we can all use a little of that.
     
  5. Moggymad

    Moggymad Registered User

    May 12, 2017
    383
    Female
    When my mum had to go into a care home I was so relieved that she had 24 hr care & was safe. It came as a surprise to me when someone we used to chat to on our occasional trips to the local cafe said to me that she understood why that decision had been taken athough she said she looked after her hubbie at home but that other people didn't always think it was right. I was momentarily lost for words but just said I hadn't even considered what anyone else had thought about it, my only concern was my mums safety & care & how much her anxiety levels had dropped down having people around her all the time. It niggled for ages that we had been the subject of that conversation with people who had no idea really what had been happening. I don't however feel the need to justify myself to them. Only the other day my partners dad who is in early/mid stages of Alzheimer's said to me "years ago you never had all these care homes. Families used to look after their relatives." He knows mums in late stages & has to be hoisted & fed, totally incontinent & can no longer say more than 2 words & our circumstances re work & unsuitable house yet this idea is so ingrained nothing else is taken into account. Perhaps a heads up for the future regards his own care! Anyway @Wifenotcarer don't let other people's comments unsettle you. You & your family have been been content with your decision & the proof is in the pudding .... your hubbie sounds content too. That's all that matters X
     
  6. kindred

    kindred Registered User

    Apr 8, 2018
    2,194
    Really? No care homes? This is true because what we had in the past were vast mental institutions on the outskirts of every city. Now posh flats and dementia care has been passed to the private sector.
    Much strength to you!
    Kindred
     
  7. northumbrian_k

    northumbrian_k Registered User

    Mar 2, 2017
    790
    Male
    Newcastle
    Simply because they have never had to do it themselves @Wifenotcarer. You know that you have done the best possible thing and that is all that counts. You'll get plenty of empathy and understanding on Dementia Talking Point.
     
  8. Palerider

    Palerider Registered User

    Aug 9, 2015
    663
    Male
    North West
    Hmm I have also been at the centre of other peoples conversations, good colleagues and friends but none-the-less they have on occassion let slip with comments which I have no idea where they came from or why until I realise that I have been 'discussed' amongst the group. The result has been a response from me that has at times stretched our friendships, but jumping to assumptions about me instead of asking me and talking to me (rather than at me) are a far better approach, than making comments that don't match what I think and feel at all and consequently getting it so very wrong which has happened on more than one occasion.

    People jump to the most oddest of conclusions or form strange ideas without once speaking to me about how things really are
     
  9. Roseleigh

    Roseleigh Registered User

    Dec 26, 2016
    180
    I think historically care homes had a bad name but they are much improved now.
     
  10. Olliebeak

    Olliebeak Registered User

    Sep 13, 2014
    59
    Buckinghamshire
    How refreshing to read your post Wifenotcarer and so good to hear you feel able to pick up the threads of your own life. I have not reached this point yet and I know if I do it will be the hardest decision. I was talking to someone the other day who had finally had to give in to his children’s pressure to decide he had done enough and his wife should go into care. He said he was completely torn between feeling huge relief and guilt and I am sure lots of people experience this. Like you he had started to look at how he was going to spend his time having actually retired in order to care for his wife. But he had booked a holiday for people travelling alone which seemed like a good place to start.
     
  11. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,054
    There is definitely a generational expectation sometimes, families looking after their aged relatives because of the stigma of going into the local institution. But then for some it was the same generation that when they got married had to give up working. I honestly don’t think people understand dementia & what it does not only to the person diagnosed but to the families that care for them until they have personally experienced it at close hand.
    I’ve been judged by so many, & found wanting. It’s been another aspect of dementia I didn’t expect, but no one knows how much goes on behind what they can see. The paperwork, phonecalls, etc

    I really have to bite my tongue on a regular basis, you really can’t win them all as they say.
     
  12. Banjomansmate

    Banjomansmate Registered User

    Jan 13, 2019
    1,166
    Female
    Dorset
    The caring certainly doesn’t stop when a loved one goes into residential care. After a phone call from his Care Home I have just spent the best part of four hours sitting in A & E with The Banjoman after it was feared he may have had a minor stroke. The eventual decision is that it is probably some kind of infection but his physical resistance to any form of testing means there is no definite diagnosis so he’ll be sent back with oral antibiotics and if he accepts them when offered fine, if not then Mother Nature will be allowed to take take her course.

    I too have started to make my own life again as our social lives were intertwined with music events. Now I help rescue and fly bats in the evenings, hoping to return them back to the area they came from. Luckily they don’t come out with annoying comments about how I should be feeling!
     
  13. pevensey

    pevensey Registered User

    Feb 14, 2012
    182
    Female
    South East Coast.
    Imtake my hat of to you wifenotcarer, my daughter was saying to me just today that she thought her dad my hubby would be happier in care home, he doesn't have a life at moment, he can hardly walk so can't go out, except to day centre once a week where he gets picked up and bought home, he always shatterd then, he can't do anything indoors his speech getting bad, he can't follow tv, hes got no interest in anything, at least in a care home he would have activity going on around him, other people to chat to in his own way he speaks, I agreed with her, I think he would be happier in that safe bubble of care home. AND I think I deserve a few years of life when I can please myself to do what and when I want. I've had a difficult 57 yrs with hubby left him twice and only came back 2nd time when he was diagnosed with vascular dementia, now I feel it's my time, but I'm not brave enough yet to do anything about it, but I'll feel guilty of course but I'll also enjoy my freedom hopefully for s few yrs I'm 78 so would like another 10 yrs if possible
     
  14. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,054
    Got to love animals for that! Though sometimes the look they give you says it all !!
     
  15. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,054
    Listen to your husbands daughter! Ask her to help you with the process of a care home.
    My biological Mum kept putting things off & now she’s passed I have lovely memories of the things we planned to do together- but never did!!!!
    That taught me a cruel life lesson.

    Don’t feel guilty.... you have nothing to feel guilty about!

    Positive moves forward please!
    xxx ((((((((Hugs)))))))))
     
  16. jenniferjean

    jenniferjean Registered User

    Apr 2, 2016
    468
    Female
    Basingstoke, Hampshire
    I think your daughter is very sensible. I only wish my daughter would think that way when the time comes. What you say is true about having things going on around him. I think my husband would be content with that. Maybe he would stop wandering from room to room looking for things to happen. Maybe he would not have so many halucinations about things happening that aren't. I agree you do need to have some life of your own. I don't think my time has been reached yet but I hope to be brave when it does and not feel guilty.
     
  17. LadyA

    LadyA Registered User

    Oct 19, 2009
    13,517
    Ireland
    I think @jenniferjean you are right about the company helping a person cope with hallucinations. It certainly helped my husband, when he moved to full time care. The " people talking" and seeing other people, when he knew that it should be only him and me, used to scare him to death, but in the Care Home, of course he could hear people talking. There were lots of people around! It seemed to set him at ease.

    But often others haven't a clue what it's like to make the decision for full time care, or to be a "midow". Your husband isn't dead, but yet is gone from you. Within a week of my husband going to a nursing home, I met a guy I knew one day. He asked how things were, and I got upset about the whole nursing home thing, because although I didn't feel guilty as such, knowing that I had done what was needed to get my husband the care he needed to have, it was still a big loss to have to let him go from my care. The guy I was talking to responded by asking me out. On a date. Yeah. :rolleyes::rolleyes:
     
  18. canary

    canary Registered User

    Feb 25, 2014
    10,524
    Female
    South coast
    [​IMG]
     
  19. Lady M

    Lady M Registered User

    Sep 15, 2018
    289
    Female
    Essex


    Hi wifenotcarer, I hope you remember me...I have to reply, I am in a situation similar to where you were you a couple of months ago ...OH in hospital has s lost what little mobility he had...... dementia has a
    Declined rapidly and I am fighting all and sundry..all the way for a residential care placement....OH deemed to have capacity so meeting after meeting which he cannot follow, exhaustive and I think unnecessary......today one of our sons is Informing them that OH has agreed he will accept a temporary placement with a review in 6weeks.but he may forget he has agreed!!! ..I don’t feel guilty at reaching this revision......his needs are now such it is essential. SS have done everything in their power to change this decision and badger me to accept him home and continue as his carer. I told them it would be an unsafe discharge ‘cos I will pack bags and leave him on his own! quite frankly I don’t think that bother them..Like yourself I am fighting on......you have been an inspiration and how good you’re continuing a life and living it! Best wishes..Lady M
     
  20. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,054
    WHAT???
     

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