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The sun is shining yet I feel sad and envious

Discussion in 'I have a partner with dementia' started by Beannie, Jul 17, 2016.

  1. Beannie

    Beannie Registered User

    Aug 17, 2015
    94
    East Midlands
    #1 Beannie, Jul 17, 2016
    Last edited: Jul 17, 2016
    The sun is shining at last but I still feel sad and yes, as hard as it is to admit I feel very envious of those of my age just starting out on their retirement able to do all the things my OH and I had planned. Instead it is nearly a year since I had to admit I could no longer cope with him at home and made the heartbreaking decision to place him in a care home.

    He was going to retire this September and we were going to buy a bungalow and then do the travelling we had long talked about. Instead two diseases called Alzheimers Dementia and Parkinsons Disease stole this away from us in November 2010 when he was only 57. He had to stop work and we struggled to make ends meet on my part-time salary and his 2 occupational pensions/DLA ,eventually making the last mortgage payment in September 2014.

    Does anyone else feel hard done by like this or am I just acting like a spoiled brat? Instead of travelling the world celebrating our 40th wedding anniversary in September I have to visit a Care Home where most of the residents are 15-20 years older than my OH.

    I know I should be thankful that he is still with us (well his body is not sure where his mind is) for now but I know what is to come and I just feel so sorry for him and of course for myself as I face old age on my own..

    Sorry to be so negative on such a sunny day!!
     
  2. Cat27

    Cat27 Volunteer Moderator

    Feb 27, 2015
    10,216
    Merseyside
    You've been robbed of your future together so it's totally understandable how you feel.
    Someone on here calls it being a midow.
     
  3. Izzy

    Izzy Volunteer Moderator

    Aug 31, 2003
    59,594
    Female
    Dundee
    Goodness you're anything but a spoiled brat. I think your feelings are entirely understandable. My husband is still at home with me I too feel jealous of my friends who are always off on their various travels. We loved our holidays and I'm glad we did some 'big' ones while we could.

    I hope sharing how you feel on here helps - even a little.
     
  4. esmeralda

    esmeralda Registered User

    Nov 27, 2014
    3,072
    Devon
    Oh Beannie of course you're not a spoiled brat, and it's absolutely normal to feel envious of those who are able to do all the things you both planned and hoped for. I think it is much harder when there is beautiful weather and you just want to go out and have a nice time together.
    I find it very hard to not feel envious when friends are talking about what they've been doing or their plans for the future. You've both had so much taken away from you and
    you've been living with this terribly sad situation for 6 years now, it's no wonder you are sad. I can't say anything to advise, the only way I can cope is to stay very much in the moment, and not think too much about the past or the future. I do find it helpful to pursue my own interests as much as possible. I'm a member of the University of the 3rd Age (U3A) I can't do nearly all the things I would like to with them but I am able to get out once or twice month walking which helps enormously. They have a huge variety of activities. Hope you are feeling better soon. Big hugs.
    xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
     
  5. Beannie

    Beannie Registered User

    Aug 17, 2015
    94
    East Midlands
    Thank you for your reply. OH and I did do a couple of' 'big ones' but he wanted to fly to New York and take the train from East to West stopping off along the way. My big dream was 6 weeks in Australia and New Zealand. Places I have always wanted to visit. I know I can go on my own as part of a tour group but not the same as sharing it with D. I feel particularly lonely as my daughter and my brother are both away (my brother is in fact in Australia to see his beloved Spurs play some friendlys out there. I do not for one minute begrudge him this opportunity, just wish it was D and I as well ) Gosh that,sounds so selfish but it is how I feel. I have good friends but they have partners so I find weekends particularly difficult. But I know I am not alone in feeling,like this it just gets to me sometimes. I am sure it will pass.
     
  6. CollegeGirl

    CollegeGirl Registered User

    Jan 19, 2011
    9,534
    North East England
    Sending you a huge hug.

    You've made me feel very humble, as I feel quite low because my husband is out of work and struggling to find another job. He's 56. Whilst we're not on the breadline, we are living on a much reduced income and are having to be very careful and creative with our money, and this gets me down as I worry so much about the future.

    But how much worse things are for you, Beannie. Your feelings are totally understandable, and not selfish at all. I'm so sorry and wish I could help.

    xx
     
  7. Scarlett123

    Scarlett123 Registered User

    Apr 30, 2013
    3,802
    Essex
    If you mention the phrase "spoilt brat" I shall sit you on the naughty chair! Of course you're not, you've both been robbed of the lovely anticipated retirement and, in its place, have been dealt Alzheimer's and Parkinson's.

    My husband had Alzheimer's with Parkinsonian tendencies (that's how it was described), and various other illnesses, and he was the youngest in his Care Home at 75, and I know how sad it is when you're visiting, and thinking of the life you'd hoped you'd be leading now.

    I find I am getting increasingly envious of hearing people say to me "we're doing x, y and z" or "we're going on holiday next month, cos we really need a break", and I wonder why the fickle finger of fate chose to visit John and I, and not them.

    You're not a spoilt brat, you're just human Sweetie xxx
     
  8. nannylondon

    nannylondon Registered User

    Apr 7, 2014
    2,476
    London
    Oh Beanie you are definitely not being a spoiled brat I totally emphasize with your feelings like you my OH has been in a care home for a year I could no longer cope at home either I feel as though I have been robbed of our retirement plans I have friends but it is not the same is it it's a hard road we are walking with our loved ones. Sending you a virtual hug ((((( ))))
     
  9. nae sporran

    nae sporran Volunteer Host

    Oct 29, 2014
    5,920
    Male
    Bristol
    Can I add a virtual hug, Beannie You should not be sorry or feel spoilt.

    Many times I have felt robbed of opportunities to enjoy fresh air and sunshine with OH. Our plans to rebuild her antiques fair business fell apart, but I have the pleasure of her company at home and make every little day out count.

    All the very best to you both in a horrible situation not of your making.
     
  10. Beannie

    Beannie Registered User

    Aug 17, 2015
    94
    East Midlands
    Hi College Girl,

    Thank you for your kind words. I don't want you to feel humble as everyone's problems are important. I hope your husband is able to find work soon. It is an unfortunate fact of life that we need money to survive. It is actually amazing how creative one can be with money when necessary. I was able to make a multitude of meals with 1 kilo of mince and piles of vegetables. Enjoy the evening sunshine.
     
  11. Beannie

    Beannie Registered User

    Aug 17, 2015
    94
    East Midlands
    Thank you so much Scarlett you are so kind with very wise words. I always read your posts and I think you came up with the word 'Middow'? You also wrote a poem which I thought was amazing. It is just so hard being a Middow knowing what is to come. I don't want to go on the naughty chair so won't use the words spoilt brat again.
     
  12. Callandergirl

    Callandergirl Registered User

    Apr 23, 2013
    96
    I empathise totally Beannie. I'm in a similar situation and although I went on holiday on my own last year and was made to feel part of the group, it does get to you sometimes when you see couples of our age and older, living the much anticipated retirement life. Life is tough isn't it, but we are human with feelings and we'd be very rare individuals if we didn't feel robbed at times. Anyone who has walked in our shoes at our relatively young time of life, or even older must have felt the same way at times. But, we can't do things together any more, so we need to live our own lives as fully as we can. If we don't we may be doubly disappointed if illness strikes us too. Big hug
     
  13. Trisha4

    Trisha4 Registered User

    Jan 16, 2014
    2,442
    Yorkshire
    Hugs from me too for your perfectly understandable feelings. We all agree, it's not fair, and we shouldn't feel spoilt or mean saying so.


    Sent from my iPad using Talking Point
     
  14. Beannie

    Beannie Registered User

    Aug 17, 2015
    94
    East Midlands
    Hi Callandergirl thanks for your reply. Iam sorry you are in a similar position to me, You speak such wise words. You are quite right and you have made me see things slightly differently than before. If I don't live the rest of my life to the full then Alzheimers and Parkinsons have won and if illness strikes me I don't want to have 'what ifs'or 'if onlys'

    I also have an elderly widowed mum to keep an eye on as well (she is 93) and I have finally persuaded her to have a bath lift seat and a telecare alert system. So that is weight off my mind.

    I hope you have a nice day.
     
  15. Scarlett123

    Scarlett123 Registered User

    Apr 30, 2013
    3,802
    Essex
    I honestly think that for a lot of people, it is harder being a Midow than a Widow. I am still amazed that I managed self control, when folk, unaffected by AD, would say "well, you know the marriage vows. For better for worse, in sickness and in health ........" and would smugly tell me what they would do in the same circumstances. :mad:

    Yes, well we all said that, but the reality of AD is horrendous. Another thing that would drive me bonkers was when I had spent ages making John look presentable, carrying out the most intimate personal tasks, only to be told by someone "well he looks fine to me". As if the fact that he was clean shaven, hair combed, and wearing suitable attire meant that Alzheimer's was a figment of my imagination! :mad:

    I ache to hear John asking me, for the zillionth time "is it Thursday?", and at times the silence is deafening, but at least I am now able to live a life, of sorts, which I couldn't do for years. And although a lot of my 50s and 60s was spent caring 24/7, there are many Midows who are much older, with even less energy, who are still having to carry out the necessary tasks of caring, and many who are much younger and with dependent children.

    And I salute every single one of you. :)
     
  16. Callandergirl

    Callandergirl Registered User

    Apr 23, 2013
    96
    Good for you xx
     
  17. WinnieP

    WinnieP Registered User

    Jan 13, 2015
    2
    That drives me bonkers as well! It even got included in a report to the GP from the Memory Clinic - that Mr .... Was well enough to dress himself in a presentable and appropriate manner - not even considering the possibility of help.
    You have to laugh about it though: the alternative is screaming!
     
  18. Daisymarguerite

    Daisymarguerite Registered User

    Jul 18, 2016
    10
    Lost

    This is my first time 'blogging' and I'm feeling that I'm being disloyal but life is pretty bleak. It's interesting that there are so many kind and inspirational people dealing with ghastly situations with hope and fortitude.
    My better half was formally diagnosed with Parkinson's dementia about two years ago although there had been signs of both parkinsons and cognitive impairment for several years before. He lacks any motivation and is now unable to look after himself. I gave up my job -whichI loved- in March. I cope with the basic caring (though I'm not to keen with the incontinence aspects or the broken nights) and I manage the home and all the extra curricular activities such as doctors, hospitals, finances. The main strain is that he can no longer form sentences or make any form of conversation. I can talk for England but it would be more stimulating if it wasn't a monologue! Life seems very grey and lacklustre. It sounds as though I'm very sorry for myself (I am!) and obviously one will just carry on but really what is the point? Ok rant over . Reading the blog here makes me very aware that I have little to moan about but it's one of those days.....
     
  19. esmeralda

    esmeralda Registered User

    Nov 27, 2014
    3,072
    Devon
    Welcome Daisymargeurite - what a beautiful name:) Life isn't at all easy is it, and it would be surprising if you weren't finding it difficult and sad. It's not easy to make a life for yourself but I do hope you can get some alternative care for your husband so you are able to have some time to do things you enjoy. We all know only too well that this can be a long journey and you need help if you are going to carry on without losing yourself. Big hug.
    xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
     
  20. irismary

    irismary Registered User

    Feb 7, 2015
    499
    West Midlands
    Oh yes I have had the "oh well you marry for better or worse, sickness and in health", very irritating. I am still here I haven't left him nor will I so its really not what I want to hear. Also I get he can't help it. Yes I know believe me if he was doing it on purpose I would have left!! I grit my teeth and carry on as they clearly have no idea how it feels to have your husband following you everywhere including the loo, closing door and windows when its red hot - even today!, unable to converse at any level, obsessed with pigeons and getting annoyed when neighbours have visitors - who are they, why are they here, they shouldn't be here etc..... On and on every day. And just lately humming hymns very loudly but he isn't religious in any way. Still love him to bits though and hate Alzheimer's and vascular disease not him.
     

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