effects on your own life?

[Lindy50]

Same here. Family was in denial for a long time. One member is still in denial. Has visited 5 times in 3.5 years and thinks that they have a better understanding of the situation then myself, who has been carrying for that amount of time. I was called a ventriloquist for "manipulating" my relative with dementia to forget them. Yup... because that is how dementia works... *rolls eyes*

In the last 3.5 years I have lost all will and patience with everyone. I have lost friends, my hair, my memory, i suffer from anxiety and depression and I have ended up twice in A&E, first time because my immune system stopped working and the second time for chest pains.

I am so sorry to hear this AngelZ ☹️
I have to say I understand your situation only too well. I haven’t been on these forums for at least a year, my health having suffered badly while caring for my mum (who is now in a nursing home).
All I can say is that as Carers we really do need to try to take care of ourselves. Pickles says it better than I can....but I know only too well how hard it is.
Sending you hugs
Lindy

 

[Lindy50]

I did an OU degree & miss the escapism of study. I’ve thought about getting back into study, but can’t afford it. I’m going to take a look at maybe starting another degree, purely for interest as I can’t see me looking at gainful employment in 6 years, if I even finished it in that time

It’s funny how you miss the TMA’s lol

Ah, how I love the OU ! I used to actually mark TMA’s, before the caring role really took over, and I even miss that! I withdrew more and more from work, until finally I was (and remain) unemployed. It’s so hard to get back into work once you’re in your 60’s, haven’t worked for some years, and don’t have a good health record. So now I content myself with a bit of voluntary work, and with helping look after my little grandson.
All I can say is good luck to all those of you still managing to work or study, I hope you can keep a foot in that oh so fulfilling door

 

[Lindy50]

My husband was diagnosed with a brain tumour 2004. Was not expected to live more than 3-5 yrs. We had two years of surgeries, chemo, radiation, a change of financial situation with both of us having reduced income, and me having to work part time. Two young children also.
DH has Neuro deficits and unable to work in usual occupation, but fortunate to have private disability insurance
All our future plans on hold. DH 14 yrs still doing well, but we are still in limbo. Grateful to have our own home ( altho mortgage) but future plans still limited due to finances.
It was and is still tough.... but yet , so far.... easy in comparison to dementia.

Mum & Dad sold their house 2007, and we built on our land for them, so they could help me with the children.
All good , until Mums health declined from 2011. Chronic Lymphocytic Leukemia, then early stage bowel cancer and then Alzheimers 2013.
Mum went into care 2016.
Alzheimers has been the toughest so far. Mentally & Physically draining.
Plans I had to increase my days at work and income, still on hold for those years Mum was at home. Have recently just added an extra day, as only feel after 20 months of Mum being in care mentally capable.
Now Mum is in hospital with a UTI & delirium. Care Home could not cope due to major aggression, and physical violence.
We hope once hospital sort out Mum with medication etc, she may be able to return.
Dead the prospect of Specialised Hospital dementia Care ( I think like EMI unit in the UK)
This is by far the hardest

Not what I envisioned when I got married and had children... one day at a time

So sorry to read about your situation Linbrusco. You just never know how things are going to pan out....
Sending you hugs and every good wish
Lindy

 

[Sillygilly]

I live with my elderly Mum and Dad, Dad was diagnosed with dementia last year and has gone downhill quite quickly, he is on medication which has actually made his condition worse. He is now under the care of his GP who only works 2 days a week and it’s a nightmare to get an appointment with her. I work full time and both my Mum and I aren’t coping very well and feel we now need support, who is best to contact for support? Many thanks.

 

[Emac]

At the risk of sounding a bit radical.......Everyone is entitled to a life. What worries me about those accepting a carer role for a person with dementia is that often over time the carer winds up with no life (really both of you might well have dementia, because it takes two lives away). The second thing that worries me is that it goes on so long....10+ years is not unusual. I wonder if society should expect that of anyone...particularly someone in their 20's . Should a younger person really have to give up the opportunity of having a family of their own in order to accept a caring role? My instinct is to say no. Five years from anyone should be maximum and beyond that some form of good reliable home care or nursing home should be available to all sufferers. Perhaps it should even be mandatory to ensure the carer does not become ill, and to offset any guilt they might feel about 'putting a loved one in a home'. No-one feels guilty when a family member needs hospital care, so why do we feel one person can provide 24 hour care and supervision of a person with dementia. This in itself is madness really!
I know it is not so simple. We feel tied by bonds of love and duty and think we have no choice, but it breaks my heart to think of a young person especially losing their chance for home and family to become a long term carer. As a society we need to find ways to support those with long term care needs other than expecting relatives to sacrifice their own lives and health so completely.

 

[Emac]

I live with my elderly Mum and Dad, Dad was diagnosed with dementia last year and has gone downhill quite quickly, he is on medication which has actually made his condition worse. He is now under the care of his GP who only works 2 days a week and it’s a nightmare to get an appointment with her. I work full time and both my Mum and I aren’t coping very well and feel we now need support, who is best to contact for support? Many thanks.

Hi You need to contact social services in your area. Ask for them to do an assessment of your Dad's care needs. They should also assess your Mum's needs as his carer. This is the way to access the support you need. Also check out some of the advice on the alzheimers website about what might be availabe. Hope that helps you get started.

 

[canary]

I haven’t been on these forums for at least a year, my health having suffered badly while caring for my mum (who is now in a nursing home).
All I can say is that as Carers we really do need to try to take care of ourselves.

Hello Lindy, its good to see you again. Im sorry your health took a pounding. It really is important to look after yoursel, as you know.
@Sillygilly - contact Social Services and ask for a needs assessment for your dad

 

[avalon]

I care for my mum . My husband and I retired 4 years ago but cannot travel or have any break as we have to be here for mum and her dog. We have not had a proper holiday for 3 years . My sister just visits as day trips a few times a year. She has a 5 week holiday in Spain booked for this year. We decided to make a stand and have booked a 2 week holiday but my sister is being really unenthusiastic about coming to care for mum trying to cut down the time she is here as much as possible. I dont want to fall out with her but a bit if support from her would be appreciated.

 

[elvismad]

I have to say this has completely taken over my life. Even though mum moved into Assisted Living Sept 2017 I still find her all consuming. Granted I don't visit a couple of nights a week but I am there most weekends (with the exception of the 1 weekend a month my brother comes up). I still need to organise shopping (online with major retailer and another online for prepared frozen meals). I organise independent careers to take mum out 3 times a week. I settle the resulting bills via online banking. I kept track of and find dentures and glasses (so far 2 top dentures have been lost and 1 bottom denture). I organise all regular medical appts - foot clinic, diabetes eye test, standard eye exam. We have joint POA for H&W & Finance. I monitor mums bank account and ensure all bills are covered (all set up via d/d). I liaise with Alzheimers Society contact, GP, Assisted Living, re any changes in mums mood. I spend hours looking for activities that will interest her - jigsaws, photo books, reminiscence cards. Nothing makes mum happier. She is lonely, lost and afraid. She is as safe as can be right now but so clingy and I think she would now be better in a care home with 24/7 attention. I feel totally drained. I had plans ( no kids so travel etc. was big on the agenda) but these have gone by the wayside. I barely speak to my husband whose mum is now in a care home some distance away - non dementia related, I go to bed angry and bitter and wake up anxious. Day after Day.

 

[Emac]

I have to say this has completely taken over my life. Even though mum moved into Assisted Living Sept 2017 I still find her all consuming. Granted I don't visit a couple of nights a week but I am there most weekends (with the exception of the 1 weekend a month my brother comes up). I still need to organise shopping (online with major retailer and another online for prepared frozen meals). I organise independent careers to take mum out 3 times a week. I settle the resulting bills via online banking. I kept track of and find dentures and glasses (so far 2 top dentures have been lost and 1 bottom denture). I organise all regular medical appts - foot clinic, diabetes eye test, standard eye exam. We have joint POA for H&W & Finance. I monitor mums bank account and ensure all bills are covered (all set up via d/d). I liaise with Alzheimers Society contact, GP, Assisted Living, re any changes in mums mood. I spend hours looking for activities that will interest her - jigsaws, photo books, reminiscence cards. Nothing makes mum happier. She is lonely, lost and afraid. She is as safe as can be right now but so clingy and I think she would now be better in a care home with 24/7 attention. I feel totally drained. I had plans ( no kids so travel etc. was big on the agenda) but these have gone by the wayside. I barely speak to my husband whose mum is now in a care home some distance away - non dementia related, I go to bed angry and bitter and wake up anxious. Day after Day.

I think you are right. Your Mum needs 24/7 support in a care home and you need to become the loving lovely person you are again before the anger and bitterness you justifiably feel destroy your own life and happiness. Start the ball rolling. Your post tells me it would be the best thing for you and your Mum.

 

[elvismad]

Hi Emac, we are awaiting an apt for review with CMHT as mums downturn is not the result of any infection and, as her GP has stated, may be her new 'Norm' Mum is not self funding. She worked all her life in low paid jobs and was married to a gambler. She somehow managed to keep us fed and clothed. They had no savings, no property and divorced when I was 16 - I am 52. He died in Nov 2017, mum does not know and often asks now if she has a husband. We are reliant on Social Services to provide care as they see fit. The Assisted Living with Care that mum currently has was suitable for her prior to the last downturn. The staff are doing their best and have even brought someone in temporarily to provide 1 to 1 support during the day. I cant see how this can go on as they have no budget for this. Mum wanders at night - in and out of other peoples rooms, there have been the inevitable complaints. Mums sleep pattern is all over the place and her exhaustion exacerbates the dementia. I feel that, regardless of mums needs, she will stay here purely as a cost saving exercise. Weekly fees for Care home here seem to start at £1000.

 

[Lindy50]

Hi Emac, we are awaiting an apt for review with CMHT as mums downturn is not the result of any infection and, as her GP has stated, may be her new 'Norm' Mum is not self funding. She worked all her life in low paid jobs and was married to a gambler. She somehow managed to keep us fed and clothed. They had no savings, no property and divorced when I was 16 - I am 52. He died in Nov 2017, mum does not know and often asks now if she has a husband. We are reliant on Social Services to provide care as they see fit. The Assisted Living with Care that mum currently has was suitable for her prior to the last downturn. The staff are doing their best and have even brought someone in temporarily to provide 1 to 1 support during the day. I cant see how this can go on as they have no budget for this. Mum wanders at night - in and out of other peoples rooms, there have been the inevitable complaints. Mums sleep pattern is all over the place and her exhaustion exacerbates the dementia. I feel that, regardless of mums needs, she will stay here purely as a cost saving exercise. Weekly fees for Care home here seem to start at £1000.

Hi elvismad, I am sorry to hear how trapped you feel - despite loving your mum and wanting to do right by her. I have to say tha5 you remind me of myself maybe three to five years ago. My mum was in sheltered housing, also insufficient for her needs, and she was also not self funded. I cajoled, argued, persuaded the powers that be that she needed more care, and it seemed I would never succeed.
But....there did come a time when mum’s needs could no longer be denied ( in her case, falls, kidney infections, unmanaged incontinence, not eating or drinking, refusing care.....). Eventually she was admitted to hospital, and from there to a care home. I hope and believe that if you hang on in there, and keep on telling it like it is, that your mum too will at last gain the care she and you so desperately need.
Sending you every good wish, and a hug for good measure.
Lindy x

 

[elvismad]

Hi elvismad, I am sorry to hear how trapped you feel - despite loving your mum and wanting to do right by her. I have to say tha5 you remind me of myself maybe three to five years ago. My mum was in sheltered housing, also insufficient for her needs, and she was also not self funded. I cajoled, argued, persuaded the powers that be that she needed more care, and it seemed I would never succeed.
But....there did come a time when mum’s needs could no longer be denied ( in her case, falls, kidney infections, unmanaged incontinence, not eating or drinking, refusing care.....). Eventually she was admitted to hospital, and from there to a care home. I hope and believe that if you hang on in there, and keep on telling it like it is, that your mum too will at last gain the care she and you so desperately need.
Sending you every good wish, and a hug for good measure.
Lindy x

Thank you Lindy50 - we will keep pushing for mum.

 

[Agzy]

I am lucky in so many was as, at 76 years of age, I still manage holidays as, although OH diagnosed with ALZ 36 months ago the drug prescribed has slowed things down. We have been caravanners for near 25 years and are at present sitting together in our caravan on a site near Delft in Holland and here for a month. Tough? Yes sometimes but I can get out and walk the woods and lakes and evenings go to rally room for company and conversation while OH watches all the old TV programmes pre recorded plus current programmes. With the help of family and a neighbour I went solo to Spain earlier this year and with same help am off on coach tour going east to west of Canada in June. I know it will end sometime soon but have all our travels saved to DVD’s for me to reminisce over when under house arrest. As I say, very lucky.

 

[Lindy50]

I am lucky in so many was as, at 76 years of age, I still manage holidays as, although OH diagnosed with ALZ 36 months ago the drug prescribed has slowed things down. We have been caravanners for near 25 years and are at present sitting together in our caravan on a site near Delft in Holland and here for a month. Tough? Yes sometimes but I can get out and walk the woods and lakes and evenings go to rally room for company and conversation while OH watches all the old TV programmes pre recorded plus current programmes. With the help of family and a neighbour I went solo to Spain earlier this year and with same help am off on coach tour going east to west of Canada in June. I know it will end sometime soon but have all our travels saved to DVD’s for me to reminisce over when under house arrest. As I say, very lucky.

So glad to hear you’re able to get out and about so well Agsy - you’re an inspiration

 

[Daffy123]

I was a carer as a child and have now been caring for 22 years as an adult. No children, career and independent life as a result. I feel like a prisoner to other peoples health and mental health problems.
Had i know aged 30 that I would have had no life if I had stayed to live and care for my parents - I would not have done it. Now that I've stuck with the caring roles for long it seems crazy to give up.

I feel l have lost me and my identity. That i am being untrue to who I am and could be. i feel like i live outside of society in a caring bubble. Trapped by a loved one.
I'm going to try and get a part-time job.

There are days where I wish my mother dead already and yet I also desperatley fear loosing her.
I have not been living my life but a role enforced upon me due to my unselfish nature.

I wait for this weight to be taken off my shoulders. I've been diagnose with CFS twice in my life yet I'm still the carer. When I can be finally free of the burden will I have the courage, health and ability to live fully, rather than hide due to having lived like a caring hermit!

 

[Duggies-girl]

I was a carer as a child and have now been caring for 22 years as an adult. No children, career and independent life as a result. I feel like a prisoner to other peoples health and mental health problems.
Had i know aged 30 that I would have had no life if I had stayed to live and care for my parents - I would not have done it. Now that I've stuck with the caring roles for long it seems crazy to give up.

I feel l have lost me and my identity. That i am being untrue to who I am and could be. i feel like i live outside of society in a caring bubble. Trapped by a loved one.
I'm going to try and get a part-time job.

There are days where I wish my mother dead already and yet I also desperatley fear loosing her.
I have not been living my life but a role enforced upon me due to my unselfish nature.

I wait for this weight to be taken off my shoulders. I've been diagnose with CFS twice in my life yet I'm still the carer. When I can be finally free of the burden will I have the courage, health and ability to live fully, rather than hide due to having lived like a caring hermit!

@Daffy123 I can identify with that. I so want my freedom back before it is too late. I am sure that I will die from something stress related a week before dad dies. Irrational I know but I swear it will happen. Some kind of Karma is coming for me and I can't hide so I have accepted it.

If I do somehow out last dad I will have the guilt of being free at his cost. Will I still be healthy, god knows. This life is awful and I have only been doing it a relatively short time. It affects everything. Work, that's gone, no money of my own coming in. Freedom, that's gone. Friendships, most of them have gone. Family, relationship with selfish brother, that's gone. Optimism, dwindling fast but I try.

 

[Daffy123]

@Daffy123 I can identify with that. I so want my freedom back before it is too late. I am sure that I will die from something stress related a week before dad dies. Irrational I know but I swear it will happen. Some kind of Karma is coming for me and I can't hide so I have accepted it.

If I do somehow out last dad I will have the guilt of being free at his cost. Will I still be healthy, god knows. This life is awful and I have only been doing it a relatively short time. It affects everything. Work, that's gone, no money of my own coming in. Freedom, that's gone. Friendships, most of them have gone. Family, relationship with selfish brother, that's gone. Optimism, dwindling fast but I try.

I've had so much unnecessary stress over a life time. I'm too am concerned it has caused damage to my long term health and longevity.
If we have found the courage to carry on in our caring roles then somehow we must find courage to live life fully when we are fee to live our lives.

I too studied at the OU (Humanities) for a long while. I gave up at level 2 as the strain of studying and caring got too much. i should have got on the phone to the OU and told them about my caring problems. I knew they offered concessions under difficult circumstances. But I'm a bit of an introvert and decided not to say anything.
Oh well I could always return to it one day.

 

[Duggies-girl]

I care for my mum . My husband and I retired 4 years ago but cannot travel or have any break as we have to be here for mum and her dog. We have not had a proper holiday for 3 years . My sister just visits as day trips a few times a year. She has a 5 week holiday in Spain booked for this year. We decided to make a stand and have booked a 2 week holiday but my sister is being really unenthusiastic about coming to care for mum trying to cut down the time she is here as much as possible. I dont want to fall out with her but a bit if support from her would be appreciated.

Hi @avalon I have quietly fallen out with my brother as support from him is nil. I saw him tonight as it was dads 88th birthday. I had been at dads all morning then gone back early evening as I always do but with my husband this time so my dad would eat something, and I could give him his tablet. Also so he would have some company and we chatted and played his music.

Brother and SIL breezed in talking about their cat gave dad his card and said how glad they were that he had some company because they could only stay a few minutes as they were on their way to another birthday. I hope they choke on the birthday cake and get a flat tyre on the way home as it's raining. Dad enjoyed his birthday regardless.

Oh yes brother lives a five minute walk from dads and visits twice a week for ten minutes to talk about himself but could not get there when it snowed and really bizarrely after his dog had some teeth out. That was the strangest excuse ever. I have to drive four miles each way twice a day every day to make sure dad is ok.

 

[jknight]

I feel really bad. I can't have mum to live with me. We would kill each other I will keep her in her house for as long as possible. I feel such a bad daughterh