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.
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.