Harbouring guilt and not knowing what to do or where to turn...

Discussion in 'I care for a person with dementia' started by followthesun, May 11, 2017.

  1. followthesun

    followthesun Registered User

    May 11, 2017
    3
    For many years I've read forum posts & found great comfort in them. Today I am writing my own first post as I have nobody else to turn to who 'understands'. I'm sorry if this is a lengthy post...

    I'm a 31 year northern lass living in Australia with my 34 year old husband - we emigrated together 18 months ago.

    My journey with vascular dementia began in 2010 when my husband & I rented a house in the street next to my Grandma.

    My Grandma is 89, Irish descent & has been a widow living alone since 1981. Ive always had a fantastic relationship with her, in fact more of a mother & daughter relationship.For a long time I was the only female grandchild & i was spoiled & loved deeply by her - I relished this as my own mother wasn't very affectionate with me but my Grandma always was. She's always been very young at heart, sociable, giddy & fun with a fantastic sense of humour. We often joked she was a teenager trapped inside an 80 year olds body! She truly is one of a kind. She's always been fiercely independent & up until about 12 months ago she was exceptionally fit walking up to several miles each day!

    Sadly, she inflicted her own strict Irish Catholic upbringing on her 3 sons & as a result her relationship with them to this day is still quite distant. Out of curtesy each son will visit once a week but there doesn't seem to be much emotional attachment.

    Grandma was ecstatic when we moved into the next street to her. She really took us 'under her wing' & insisted on cooking dinner for us a couple of times per week, we started doing our weekly shop together & she'd even walk to work with me each morning. We became inseparable to the point a day wouldn't go by without us seeing each other, however, due to spending this much time with her we began to notice things weren't right & were progressively getting worse.

    It started with the usual...finding the milk in the cupboard instead of the fridge, coming to our house at 5am on a Saturday morning adamant I was late for work, no longer coordinating her outfits like she once did, forgetting things we'd told her etc. She had always been a little scatty but we knew something wasn't right.

    For the best part of 2.5 years as her (then undiagnosed) illness progressed I expressed my concerns to my dad & his 2 brothers & was constantly ignored. They said she'd always been potty or she was being naughty / attention seeking. They basically did not want to get involved & selfishly didn't seem to care the impact it was having on my husband and I.

    Naturally, we progressed to become her full time carer. More often than not she stayed at our house, mainly so we could keep an eye on her as she'd started to go wondering. At the minimum we would Cook her dinner each evening. She was mostly still her happy & excitable self.

    Following vivid hallucinations where she believed the people on the TV were in her lounge & other frightening instances which would see her calling us in the early hours distressed we decided to speak to her Dr. As I was only a grandchild there was very little the Dr would do/tell me. Eventually she had a serious fall with her ending up in hospital - 4 weeks before our wedding - it was then that she was diagnosed with vascular dementia.

    My father & 2 brothers still didn't step up to the mark & on coming out of hospital she moved in with us before gradually going back home. Sadly it didn't work out. She no longer felt comfortable in her own home, the wandering during the early hours became more frequent & my husband and I couldn't be there 24/7 to keep an eye on her. It broke our heart when her sons decided 'enough was enough' in early 2015 & put her in a care home.

    My husband & I religiously visited every day, we were in fact her only visitors except for the standard 1 hour visit on a Sunday from her sons. We would take her out as often as we could to try & maintain some normality in her life but over time the stronger medication that her new Dr insisted she should take along with the daily 'sedative' that her & the other residents seemed to be force fed meant more often than not when we visited she'd either be asleep or too drugged up & confused to take out. I regularly expressed my concerns with my family, the care home & her old Dr but being only a granddaughter it all fell on deaf ears.


    Mid 2015 my husband was offered a once in a lifetime opportunity to work for a company in Australia - with all moving costs paid for. Having spent a gap year in Australia & having family & friends there we decided to take the opportunity & we moved Oct 2015.

    It broke my heart leaving my Grandma. We couldn't tell her we were moving as we was all she had & so we pretended we were going on holiday. When we left the UK she was still fit & able but increasingly more confused & at the stage where holding a conversation was difficult. She was however still fully aware of who we were & where she was etc. She could still do everything for herself, with help from careers. She was the fittest resident in the home.

    My biggest fears about leaving Grandma have sadly become true. The weekly phone call my dad promised to make to me so I could maintain contact with her ended a few weeks after us leaving as he said the time & day no longer suited. My father then moved her into a new home which I begged him not to due to such horrendous reviews & inspection reports I'd researched online. 7 weeks after moving to the new home in September of last year she fell & broke both hips resulting in a 9 week stint in hospital where we thought we'd loose. Communication with my family on how she was doing was infrequent & I was accused of harassing them all with the constant need for updates. Luckily, the nurses on her ward were understanding of my situation & gave me as much information as they could.

    My husband & I flew home for Xmas to see her. The change in her was both drastic & distressing! She'd gone from 8 stone down to 5. She looked so much older, she spoke in a whisper, has no ability to sit up without support & due to being unable to cooperate with physio she'll never stand or walk again. That in itself is another story in which I'm currently processing a legal claim as my perusal with social services & the QCQ proved the home to at fault of neglect.

    The first day we saw Grandma she didn't seem to recognise us as she was in & out of sleep most of the time, however, as the 3 weeks went on the care home said they noticed a dramatic change in her. Her spirits lifted, her mood changed & she became happy & chatty, she even seemed to get enough strength to sit upright for an hour or 2 at a time resulting in the careers allowing her to sit in the communal lounge every other day. Her appetite came back & she started to gain weight. Although our conversations never made much sense we knew from the look In her eyes & the way she affectionately would touch us & hold our hand that she knew it was us. A couple of things she asked us also confirmed she knew it was us.

    Since returning to Australia she's drastically going down hill again, I think mostly from lack of stimulation, lack of visitors & general depression. My family continue to just tell me 'she's fine' when I enquire. If I ask specific questions they accuse me of interfering, it's as though they begrudge us for moving away & them having the burden of dealing with her. I phone the care home weekly but again being only a granddaughter they can't tell me too much, they have however confirmed the peak in her recovery was only during the 3 weeks we were back home.

    I very much blame myself for her fall & the guilt I'm still harbouring 8 months on is killing me. Despite begging & pleading with my dad not to send her to the new home he did & as a result the fall happened. I truly believe if I'd have still been living in the U.K. I could have ensured the move didn't happen and even though her dementia would probably be the same now at least she would have still had her mobility!

    Since returning to Oz after Xmas I can't get my Grandma out of my mind. I feel responsible for her, I worry about her every day, I feel guilty for being here & not at home where I know my presence makes her happy in a world where she's very unhappy, I have no faith in my family and no trust in any care home. The daily stress is starting to become a problem and I feel that I want to move home so I can be there for her.

    I just don't know what to do? Has anybody else been in a similar situation who can share some advice and coping strategies please as I feel the stress and guilt is starting to take over my life.
     
  2. Clueless2

    Clueless2 Registered User

    May 14, 2015
    34
    Welcome to TP, I am sure that you will receive more advice and support than I can offer soon, but I didn't want to just read and run.

    Practically, I would suggest rather than phoning your dad or uncles for updates, just phone the care home direct, they should be able to update you on her health and activity level.

    Sadly falls happen even in the best of homes. There is a fine balance between allowing residents prone to falls, to still independently attempt to move around on their own and only allowing them to move with assistance. Dementia is a progressive detiorating illness, vascular dementia in particular can have periods of no or limited change, interspersed with rapid decline and then another plateau

    Try not to allow the guilt you feel to fester; in her right mind your gran would have been very happy and proud that you and your husband had taken the opportunity in Australia.

    You have not abandoned her nor are you responsible or could you have prevented her fall. Indeed you can still very much support her from afar by sending her cards and phoning the home.

    Good luck
     
  3. followthesun

    followthesun Registered User

    May 11, 2017
    3

    Thanks for your kind words. My husband says the same 'you couldn't have prevented her fall by being at home' - but I could have prevented her from moving into the home, who as I say are currently being sued for neglect. I do see both of your points though but it's hard for me not to feel some responsibility as I was solely responsible for her for so long, in lots of ways I feel like I've neglected her.

    In regards to calling the home, I do, weekly, but they're never much help. They can't give me any specific details just the general 'she seems happy today' or 'she's slept most of today' so in reality it's no more information than my family give me sadly. She's not capable of talking on the phone anymore so that's not something I'm able to do with her - I do ask my dad can we do FaceTime or Skype but he refuses to visit her on a weekend as it's not convenient for him and with the time difference here in Australia It's the middle of the night on a Thursday afternoon when he goes.

    It's such a tricky situation, but thank you for responding t my post - I apprecaite it was quite an essay to read.
     
  4. Marcelle123

    Marcelle123 Registered User

    From reading your post, I know that you are a caring and loving granddaughter who gave such a lot to your grandmother. I really don't think you should feel guilty - naturally your husband had to take this opportunity. It is very very sad about your grandmother, but she wouldn't want you to feel so anguished.

    I don't know the full circumstances but from your post it sounds as if the rest of the family are not on your wavelength, and that being so, it might not have been possible to have stopped the care home decision - or if you had, it might have led to a lot of bitterness and divisions.

    I know that guilt and anxiety are very very hard to deal with - but you need to be kinder to yourself. You have always done what you could for your grandmother, consistent with the fact that you have other relationships and obligations.

    You are a good kind person who has always tried her best.
    Wishing you peace of mind. xx
     
  5. LadyA

    LadyA Registered User

    Oct 19, 2009
    13,509
    Ireland
    One other thing that maybe you should talk to your dad about, is the reason your gran was moved. If her assets fell below a certain point, and she was no longer self funding, it may be that the former home was no longer affordable, and perhaps the move was more down to Social Services/the LA than your dad and uncle? Sadly, people are moved from a home where they have settled, to one that the LA will cover.

    I do feel for your situation. It's so difficult to be so far away. My late husband had eight adult children, all overseas, who could only visit now and then because they have young families, and flights are expensive. We used skype to keep in touch with several of them, is that something you could maybe arrange with the nursing home? Sometimes my husband would talk and laugh & wave at his children/grandchildren, other times he would just scowl and avoid looking at them. But it kept them as familiar faces, and he enjoyed getting the calls.
     

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