Emotional Impact

[ollyfran]

You could be talking about my Mum here

You've hit the nail on the head there, Danbar - it is the ONLY way to cope. Take each day, each moment, each problem, as it comes and deal with it then and there - then try to forget about it until the next time. I've had many a sleepless night (like now - 1.40am!) worrying about my Mum, and what to do, how to help a stubborn, independent woman, who is now nothing like the Mum that I used to know, and is is total denial, and refusing any help her carers offer.

I read your post and thought, at last, someone who appears to have the same problem as me. Having said that, I realise that we are all on different journeys but it is heartening to know that there are some similarities and none of us are on our own. I am actually not my Mum's main carer, that would be my Dad. At 89 though, and having coped virtually single handedly for 7 years, due to his strong independent streak (also know as stubborness!!) the family feel he is struggling and needs some "me" time. But he won't give in and won't let anyone else help so we are fighting a losing battle. Mum is, and always has been, in total denial. She converses only with my Dad and totally ignores anyone else who tries to talk to her. If she doesn't understand something you are saying she turns to Dad for clarification. She also has a hearing problem which she totally denies too. This means that anything and everything is repeated 2 or 3 times. A hearing test is out of the question and would be a waste of time anyway as "there is nothing wrong with my hearing and I am not having hearing aids" It is very wearing to try to deal with Mum's problems and try to get through to Dad that this complete dependancy by Mum on him is going to be a real problem if anything happens to incapacitate him. Ah well, sometimes we just have to accept defeat and jump in when there is a crisis!

 

[Mannie]

I read your post and thought, at last, someone who appears to have the same problem as me. Having said that, I realise that we are all on different journeys but it is heartening to know that there are some similarities and none of us are on our own. I am actually not my Mum's main carer, that would be my Dad. At 89 though, and having coped virtually single handedly for 7 years, due to his strong independent streak (also know as stubborness!!) the family feel he is struggling and needs some "me" time. But he won't give in and won't let anyone else help so we are fighting a losing battle. Mum is, and always has been, in total denial. She converses only with my Dad and totally ignores anyone else who tries to talk to her. If she doesn't understand something you are saying she turns to Dad for clarification. She also has a hearing problem which she totally denies too. This means that anything and everything is repeated 2 or 3 times. A hearing test is out of the question and would be a waste of time anyway as "there is nothing wrong with my hearing and I am not having hearing aids" It is very wearing to try to deal with Mum's problems and try to get through to Dad that this complete dependancy by Mum on him is going to be a real problem if anything happens to incapacitate him. Ah well, sometimes we just have to accept defeat and jump in when there is a crisis!

Might also be useful to consider whether your dad also has early stage . This may be causing him to be unreasonably stubborn, since dementia affects your judgement.

This happened to us we were so busy focusing on a that we didn't really notice b, a social worked did though.

 

[jpk]

Point of understanding

I am in the same situation and I reached a point where I was very edgy and irritable. It turned out to be stress. I care for my wife 24x7, and have done so for the past 8 years. I had a conversation with my daughter and a close friend, and they suggested that I get a carer in one day a week so that I could have a break. I rejected the idea, but on thinking about it I have decided to follow their advice. If I keep going as I am the stress level will increase and I will be of no use to her. I have to think of her so therefore I have to get a break so that I can continue with full support. If I am not here, what will happen to my wife. I had to stop thinking that I could do it, and I am now looking to get some support atleast one day per week. My advice is to stick with it, get some help, your wife will need you more as time goes by. I do think of the past, but its today that matters. You must be there for her. There is no one else.

 

[Bill Owen]

i am new to talking point and i am pleased to say that i am finding the responses to the two posts that i have made very useful, and my thanks go to the people who have responded.

One of the areas that does not appear to be talked about too much is the emotional hurt that one feels watching the person you love disintegrate before your very eyes whilst they travel on their alzheimer's journey.
Everyone involved in providing support for carers always says that the carer needs to take time out from caring in order to recharge their batteries and i fully understand the need to do this. However i find that i am able to cope with all the extra physical work that being a full time carer requires what i have difficulty with is coping with the emotional impact when i see my life long partner, we met when we were 13, slowly being lost to me.

At times she does not know who i am or that we are married. Our relationship is now so different with my partner being totally reliant on my support, which i am only to keen to give, but it is now such a one sided partnership.

I find it very distressing to find her struggling with basic things and knowing that each day she appears to be slipping further away from me.

I am sure it is the same for everyone and the only way to cope is to concentrate on the now and try not to think to far ahead.

hi . Im bill. My wife of 30 years marage. By the way im dislix so baer with me on this. My wife has lewy body (alzheimer) i to fine the emotional side of it has well . All of the future has gone for the both of has . Seeing my wife disaper, no love any moor . Seeing her face with fear. Make me cry . Missing out on the grandchaild .upset. Me no holldays with ehch other . So match lost . On my own in the nigth 7 days a week . Yes you can have care coming out . That fine but you have to arag for that . You can not just go like that .sleeping on you own .it is very tuff. Bat be strong keep going that is all we can do .

 

[Scarlett123]

hi . Im bill. My wife of 30 years marage. By the way im dislix so baer with me on this. My wife has lewy body (alzheimer) i to fine the emotional side of it has well . All of the future has gone for the both of has . Seeing my wife disaper, no love any moor . Seeing her face with fear. Make me cry . Missing out on the grandchaild .upset. Me no holldays with ehch other . So match lost . On my own in the nigth 7 days a week . Yes you can have care coming out . That fine but you have to arag for that . You can not just go like that .sleeping on you own .it is very tuff. Bat be strong keep going that is all we can do .

Bill, I sympathise so much. Thank God we can all be here on TP for each other. I agree with everything you say and your wife is so lucky to have you.

 

[nannylondon]

I am finding that I cope for a few days and then everything crashes down again, my poor hubby no longer has any idea what is happening to him, so I suppose its a blessing in one sense for him, for me all I see is the man I married, disappearing before my eyes, a strong man, who never showed fear, is now a frail frightened man, and my emotions are in turmoil most of the time, I wanted to help others by becoming a befriending volunteer, but find I cant do it, how can I help others when I cant seem to help myself. The CH look after him well, but I come out and cry, I miss him, the old him not the one now. I read comments and think I am not in as bad a place as some others, but even so I still cant cope. - Sorry folks having a bad week. Feeling sad and lonely, I know I'm depressed, but cant seem to snap out of it, haven't got the energy. The roller coaster is stuck on the down bit.

Oh Mabbs my heart goes out to you this horrible illness is not just destroying the one who is ill it affects there loved ones my poor hubby is the same as Phil just so frail I am like you I often come home after a visit and cry try to put a brave face on for my boys who are both trying to be there for me but they have got to get on with their lives I am not surprised you are not at the place to befriend others I am sorry I didn't see your post yesterday sending you a big hug xxxxx

 

[GingGing]

How do you seem so positive?

I cannot help but admire those of you who seem so positive and loving with regard to the decline of your "loved ones". I'm finding it next to impossible to see any spark of joy in the life I'm forced to lead with my Mum. I don't know where to go for help. Social Services are aware if our existence but apart from the occasional phone call to agree that I need some form of respite, nothing actually happens. I wrote these words last week, thinking I would post them then but didn't have the courage. .. I'm putting them "out there" now.

I have reached the end of my patience and sometimes feel that I will do something horrible to either my Mum or myself. The future looks so bleak.

My wonderful life - partner died in 2014. He had lung cancer and he (we!) fought it for 2 long years. We'd been together for just 10 years before diagnosis. In that time, my mother lived 3 hours drive away and consequently spent many visits to and from us but still had to manage ( in her words "muddle through") on her own. I'm an only child. My ex - husband was also, so there are no siblings or in - laws to help. I have no children of my own - though I eventually became a Granny several times over with my wonderful partner. Since his death, his children have decided not to keep in touch

Mum has mixed dementia - vascular and Alzheimers. She is 86. When I was "widowed" I realised that she now needed daily help. I sold my home in Wales and moved back to Hampshire just 8 months after his death, to be near Mum and help as much as I could in her daily life. Within week of renting a place nearby, it became obvious that she needed full time care. I bought a home big enough for both if us 4 months ago.

Just had to interrupt this note for my every- 5-minutes-request to do something for her. I never get a moment of time to myself. So, that's her second breakfast this morning dished up. In half an hour she'll be asking when it's lunchtime. I can write down now exactly every question, every phrase that I will hear between now and bedtime. In the interim she will be following me around like a shadow. All night she'll be wondering, opening drawers, flushing loos, closing curtains. I should never have thought that I could manage.

I had a very naive view that if Mum felt safe,if I provided food, warmth, security and occasional company and stimulation, that we could live under the same roof - but that I would also have an element of independence. How foolish I was. Every waking hour is pandering to her needs. and the repetition of questions is just mind blowing. I cannot cope any more. There is no one else to share the burden. No respite. Oh Lord, here she is again.

If I even mention going out for a walk on my own for a few minutes, she cries that she cannot be left alone. I am afraid of becoming a bully. She thinks she is just visiting so when she asks about her home, it's simpler to dodge the question and suggest she stays here just a few more days. Some days I am cruel and state that THIS is her home and see how confused she is. But she asks over and over and over and I find myself unable to repeat a calm answer very time. I sometimes think I am going mad.

I've started hitting walls.... Oh Lord here she is again. I now drink wine during the week - it used to be a hard rule, weekends only. And all the time I cry... I miss my man so much. I've jumped from the frying pan into a raging hot fire. No future. No hopes. No plans. Just loneliness and incessant repetition.

Writing this, I know no one can actually help unless the authorities come and take Mum into care. No need for Samaritans yet though, by some miracle I'm not brave enough to take my own life - yet. I suppose in all this, that's a positive.

I feel marginally better for writing this down. I hate this disease.

 

[Lavender45]

I cannot help but admire those of you who seem so positive and loving with regard to the decline of your "loved ones". I'm finding it next to impossible to see any spark of joy in the life I'm forced to lead with my Mum. I don't know where to go for help. Social Services are aware if our existence but apart from the occasional phone call to agree that I need some form of respite, nothing actually happens. I wrote these words last week, thinking I would post them then but didn't have the courage. .. I'm putting them "out there" now.

I have reached the end of my patience and sometimes feel that I will do something horrible to either my Mum or myself. The future looks so bleak.

My wonderful life - partner died in 2014. He had lung cancer and he (we!) fought it for 2 long years. We'd been together for just 10 years before diagnosis. In that time, my mother lived 3 hours drive away and consequently spent many visits to and from us but still had to manage ( in her words "muddle through") on her own. I'm an only child. My ex - husband was also, so there are no siblings or in - laws to help. I have no children of my own - though I eventually became a Granny several times over with my wonderful partner. Since his death, his children have decided not to keep in touch

Mum has mixed dementia - vascular and Alzheimers. She is 86. When I was "widowed" I realised that she now needed daily help. I sold my home in Wales and moved back to Hampshire just 8 months after his death, to be near Mum and help as much as I could in her daily life. Within week of renting a place nearby, it became obvious that she needed full time care. I bought a home big enough for both if us 4 months ago.

Just had to interrupt this note for my every- 5-minutes-request to do something for her. I never get a moment of time to myself. So, that's her second breakfast this morning dished up. In half an hour she'll be asking when it's lunchtime. I can write down now exactly every question, every phrase that I will hear between now and bedtime. In the interim she will be following me around like a shadow. All night she'll be wondering, opening drawers, flushing loos, closing curtains. I should never have thought that I could manage.

I had a very naive view that if Mum felt safe,if I provided food, warmth, security and occasional company and stimulation, that we could live under the same roof - but that I would also have an element of independence. How foolish I was. Every waking hour is pandering to her needs. and the repetition of questions is just mind blowing. I cannot cope any more. There is no one else to share the burden. No respite. Oh Lord, here she is again.

If I even mention going out for a walk on my own for a few minutes, she cries that she cannot be left alone. I am afraid of becoming a bully. She thinks she is just visiting so when she asks about her home, it's simpler to dodge the question and suggest she stays here just a few more days. Some days I am cruel and state that THIS is her home and see how confused she is. But she asks over and over and over and I find myself unable to repeat a calm answer very time. I sometimes think I am going mad.

I've started hitting walls.... Oh Lord here she is again. I now drink wine during the week - it used to be a hard rule, weekends only. And all the time I cry... I miss my man so much. I've jumped from the frying pan into a raging hot fire. No future. No hopes. No plans. Just loneliness and incessant repetition.

Writing this, I know no one can actually help unless the authorities come and take Mum into care. No need for Samaritans yet though, by some miracle I'm not brave enough to take my own life - yet. I suppose in all this, that's a positive.

I feel marginally better for writing this down. I hate this disease.

Hi GingGing

I read your post and just feel so sad. I haven't been caring for my mum for long, we share a house and she was always independent. Now mum needs constant support, she cannot shop unsupported, cannot pay bills (she wanted to put the cash for the gas/electric bill in the postbox today, will really have to switch to DD), she cannot bank, cook, or do anyone of a thousand things she did without thinking not so long ago. Every day we have the same questions, she thinks we are staying in a holiday home, this is no holiday, there is little pleasure in life at the moment. What I want to say is I think I understand if only a little, the repetition day after day does my head in and from someone who didn't drink from one month to the next I can see the benefit of the odd glass of wine.

I was naive, I thought I could do this, now I'm not certain, mum has just knocked the soap dish off the wall in the shower, it was solid, its tucked out the way, but she's managed it, but she's saying it wasn't her fault, it was already loose, no it wasn't. That small thing reduced me to tears, I realise I cannot do this long term and have some tough decisions to make.

I don't think you mentioned any support in your post. In my case I'm thinking about how I can get day care to give me some free time and I'll be honest and say I've been looking at care homes though only on line.

Whilst I'm moaning about my lot in life I'm conscious that you have only just lost your partner and you've had almost no time to grieve, something I really think you need. If you haven't already done so maybe you could look into getting a carer assessment, maybe your mum could have some day care or carers coming in to help which could give you some time to yourself. I'm also sticking my oar in and saying I think you need to see your GP about how you are feeling. You are working so hard caring for your mum and I'm willing to bet you are doing a really good job of it, but your own health is every bit as important as your mum's if you get ill you will not be able to care for your mum.

Sorry to sound bossy and opinionated, but I'm concerned by how you are feeling. Please try to get some help asap.

Lavender45 x

 

[Jinx]

GingGing, I am so sorry to read your post. I can only begin to imagine how lonely and at your wits end you must be. My husband is nothing like as demanding as your Mum but after a long weekend of 'when are we going homes', 'I'm just going upstairs' when we live in a bungalow and where are Mum, Dad, Granny, Uncle etc. etc. (all dead) is hard to take. I have various sources of respite during the week, I couldn't do this otherwise. You do need to get more help, you need to lay it on the line with Social Services to get more help with your Mum. You have to think if you suffered carer breakdown what would happen to your Mum. Huge hug xxx


Sent from my iPad using Talking Point

 

[Lindy50]

Hi GingGing

First of all I must say how much I admire you for taking on your mum's care so soon after you were widowed. And as Lavender says, I bet you do a pretty good job of it.

However....I am worried about you. No-one can care for someone 24/7 in these circumstances, without support and without a break. At the very least I think you need some carers breaks in the form of sitting services or respite. And to be realistic, if I were you I'd be seriously considering a care home for your mum.

You could do worse than print off what you've put here ( or most of it) and take it to your GP. I really think you need help, and your post makes this clear. Also you could phone a helpline, either the Alzheimer's society one, or the Admiral Nurses, who I've heard are excellent.

Concerning social services, yes, they have a duty to help, and you could try them too.

I'm off to look for the helpline links and in the meantime am sending you huge (((hugs))).

Lindy xx

PS Alzheimer's Society helpline: http://www.alzheimers.org.uk/site/s...=200365&_ga=1.105808000.2060127083.1385151397

Admiral Nurses: http://www.dementiauk.org/what-we-do/admiral-nurses/

 

[Cucu Mzungu]

Being driven up the wall...

To all of you coping with a partner / spouse going downhill...I have so often felt how it must be really awful watching the person you have hoped to get long-term support from moving further and further away from you. I send much sympathy.

To GingGing - I agree with the others; do everything you can to get as much help as possible as soon as possible. I doubt that anyone could cope for more than a few days with what you are coping with and especially not having suffered all your other major sadness and shocks.

I care for my mother generally for a day or two a week , sometimes for several days in a row. I too find the loss of the most reasonable and considerate and even-tempered mother that I used to have hard to take - and when the previous one "appears" for a while I don't relax as I don't know when she'll switch back into being unreasonable, anxious and angry.

I have asked friends and my partner if they can describe what makes being with her so tiring and stressful - so that I don't have to feel too silly about it. They talk about how hard it is to cope with the unpredictability of the sudden mood changes and sudden switches in what she wants.

And now the daughter of a long-term friend of my mother's (this friend also has dementia but is rather placid and is, I think, always pleasant) has said that she would prefer not to see my mother any more because she can't cope with my mother's rudeness. That makes me quite angry...though maybe I should be more understanding as she too is coping with a lot.

 

[Tiller Girl]

Ging ging you really must seek some help. It's so draining just living day to day with someone with dementia. Like you say the constant questions, the following you about. My OH does both of those things and has about a 2 minute memory span . He also puts things down and then can't remember where he's left them.

It's all very wearing on a day to day basis. I'm fortunate that I have my son living with us so we take it in turns to have breaks which helps.

So please contact someone carer's association or the social services for help . Even if you only have an hour or two......it's just so lovely to wander round the supermarket on your own ! Although I'm sure you'll find something better to do.

TG

 

[delores]

I am new to talking point and I am pleased to say that I am finding the responses to the two posts that I have made very useful, and my thanks go to the people who have responded.

One of the areas that does not appear to be talked about too much is the emotional hurt that one feels watching the person you love disintegrate before your very eyes whilst they travel on their Alzheimer's journey.
Everyone involved in providing support for carers always says that the carer needs to take time out from caring in order to recharge their batteries and I fully understand the need to do this. However I find that I am able to cope with all the extra physical work that being a full time carer requires what I have difficulty with is coping with the emotional impact when I see my life long partner, we met when we were 13, slowly being lost to me.

At times she does not know who I am or that we are married. Our relationship is now so different with my partner being totally reliant on my support, which I am only to keen to give, but it is now such a one sided partnership.

I find it very distressing to find her struggling with basic things and knowing that each day she appears to be slipping further away from me.

I am sure it is the same for everyone and the only way to cope is to concentrate on the NOW and try not to think to far ahead.

You're absolutely right Danbar. You won't cope at all if you look too far ahead, you just have to get up each morning and do what is required of you then and there. This disease forces you to live in the moment because that is all there is for the person you are caring for. It's heartbreakingly sad but hang in there.

 

[Grey Lad]

You're absolutely right Danbar. You won't cope at all if you look too far ahead, you just have to get up each morning and do what is required of you then and there. This disease forces you to live in the moment because that is all there is for the person you are caring for. It's heartbreakingly sad but hang in there.

Thanks for your post I needed to keep this in mind today. One day at a time.

 

[ollyfran]

Might also be useful to consider whether your dad also has early stage . This may be causing him to be unreasonably stubborn, since dementia affects your judgement.

This happened to us we were so busy focusing on a that we didn't really notice b, a social worked did though.

I hadn't thought of that.....Wow that's depressing! I will look for further signs now. Thanks for that....I think x

 

[Rivershores]

I cannot help but admire those of you who seem so positive and loving with regard to the decline of your "loved ones". I'm finding it next to impossible to see any spark of joy in the life I'm forced to lead with my Mum. I don't know where to go for help. Social Services are aware if our existence but apart from the occasional phone call to agree that I need some form of respite, nothing actually happens. I wrote these words last week, thinking I would post them then but didn't have the courage. .. I'm putting them "out there" now.

I have reached the end of my patience and sometimes feel that I will do something horrible to either my Mum or myself. The future looks so bleak.

My wonderful life - partner died in 2014. He had lung cancer and he (we!) fought it for 2 long years. We'd been together for just 10 years before diagnosis. In that time, my mother lived 3 hours drive away and consequently spent many visits to and from us but still had to manage ( in her words "muddle through") on her own. I'm an only child. My ex - husband was also, so there are no siblings or in - laws to help. I have no children of my own - though I eventually became a Granny several times over with my wonderful partner. Since his death, his children have decided not to keep in touch

Mum has mixed dementia - vascular and Alzheimers. She is 86. When I was "widowed" I realised that she now needed daily help. I sold my home in Wales and moved back to Hampshire just 8 months after his death, to be near Mum and help as much as I could in her daily life. Within week of renting a place nearby, it became obvious that she needed full time care. I bought a home big enough for both if us 4 months ago.

Just had to interrupt this note for my every- 5-minutes-request to do something for her. I never get a moment of time to myself. So, that's her second breakfast this morning dished up. In half an hour she'll be asking when it's lunchtime. I can write down now exactly every question, every phrase that I will hear between now and bedtime. In the interim she will be following me around like a shadow. All night she'll be wondering, opening drawers, flushing loos, closing curtains. I should never have thought that I could manage.

I had a very naive view that if Mum felt safe,if I provided food, warmth, security and occasional company and stimulation, that we could live under the same roof - but that I would also have an element of independence. How foolish I was. Every waking hour is pandering to her needs. and the repetition of questions is just mind blowing. I cannot cope any more. There is no one else to share the burden. No respite. Oh Lord, here she is again.

If I even mention going out for a walk on my own for a few minutes, she cries that she cannot be left alone. I am afraid of becoming a bully. She thinks she is just visiting so when she asks about her home, it's simpler to dodge the question and suggest she stays here just a few more days. Some days I am cruel and state that THIS is her home and see how confused she is. But she asks over and over and over and I find myself unable to repeat a calm answer very time. I sometimes think I am going mad.

I've started hitting walls.... Oh Lord here she is again. I now drink wine during the week - it used to be a hard rule, weekends only. And all the time I cry... I miss my man so much. I've jumped from the frying pan into a raging hot fire. No future. No hopes. No plans. Just loneliness and incessant repetition.

Writing this, I know no one can actually help unless the authorities come and take Mum into care. No need for Samaritans yet though, by some miracle I'm not brave enough to take my own life - yet. I suppose in all this, that's a positive.

I feel marginally better for writing this down. I hate this disease.

Oh Ging Ging your post brought tears to my eyes. First and foremost I want to say please please please seek some kind of help and assistance (easier said than done I know). What you are facing and coping with is so difficult and even the strongest person on the planet would find it hard to cope. I think it was very courageous of you to write such an honest account. Some days I have felt desperate and not known what to do and found myself thinking about "ending it all" but I would never have had the courage to admit that! I think it is nigh on impossible for anyone who hasn't experienced caring for someone with dementia to fully appreciate the emotional toll it can take on the family member. I have grieved for so long and it has taken me years to come to terms with never getting back "my mum". And when she obsesses about 'the bugs' she sees in her hallucinations/delusions it is both annoying and heartbreaking. The mix of emotions I have to deal with have at times brought me to my knees. This really is the cruellest disease and so many of us are facing the challenges that it brings. I can only imagine what it must be like for those of you whose life partner is being lost to dementia. I have found it hard enough adapting to taking up the parenting role of my parent. Nothing prepared me for this! And when I feel so irritated, exhausted and annoyed I look at her and see the little old lady who's fault this isnt and I just cry and cry and cry. I often wonder if, when she finally passes away, whether I will have any tears left.

 

[Rivershores]

Welcome to TP rivershores

Thank you very much! What a wonderful bunch of people you all are!

 

[Lindy50]

I have grieved for so long and it has taken me years to come to terms with never getting back "my mum". And when she obsesses about 'the bugs' she sees in her hallucinations/delusions it is both annoying and heartbreaking. The mix of emotions I have to deal with have at times brought me to my knees. This really is the cruellest disease and so many of us are facing the challenges that it brings. I can only imagine what it must be like for those of you whose life partner is being lost to dementia. I have found it hard enough adapting to taking up the parenting role of my parent. Nothing prepared me for this! And when I feel so irritated, exhausted and annoyed I look at her and see the little old lady who's fault this isnt and I just cry and cry and cry. I often wonder if, when she finally passes away, whether I will have any tears left.

Me too, rivershores At the moment I find I cannot stop crying....and I do wonder whether, when mum passes (if I am still alive, as in some ways she seems physically fitter than I am).....whether then, I will be so utterly worn out, I will look to others like some hard-faced b***h who doesn't care.....although what does it matter, really, what they think?

The other thing is that I know my OH, lovely guy that he is, is increasingly fed up with waking up to the sight and sound of a red-eyed, stressed-out wife. It's not fair on him and I'm not sure how long he can take it

Welcome, by the way, and I'm sorry to be so miserable...

Lindy xx

 

[nannylondon]

Oh Rivershores my heart goes out to you please try and get some help you sound so desperate we carers are not saints and I think everyone gets impatient with person we are looking after we wouldn't be human if we didn't so don't beat yourself up keep.posting on here it has been a lifeline to me during a very difficult time you can say how you feel.and not be judged and get some wonderful.support hugs xxxx

 

[cragmaid]

Although this was posted to the " Partner With" section, it applies to all carers. There is an emotional impact to any of us who care....because we care!.

I know that, compared with others who care for a spouse or partner, I had it easier because it was my Mum. I was fortunate to have the support of my OH and family. I was fortunate that I did not have a full time career or children still living at home. Again I was fortunate that we had no funding or housing issues. I was fortunate ( if this is not too weird to say) to know that there was a recognised reason for Mum acting the way she was. I was fortunate that, whilst Mum was never as close with me as she was with either of my siblings, she was prepared to let me take over certain aspects of her daily life. I was fortunate to get support from the LA and the Care Home where Mum spent her last three years. I was fortunate that Mum was not young, or physically fit when her Dementia developed. I was truly fortunate to find TP and to make some wonderful friends.

I also suffered greatly from the impact that Mum's dementia had on my life and my health My spine needed surgery a few years ago and Mum could not be left alone and would not consider respite therefore no surgery and a continuing, worsening, irreparable condition. It impacted on my children and my grandchildren. My husband and I had no breaks for over 4 years. We took separate trips to visit family. The phone, ringing, still causes my heart to thump. Our lives were totally dominated by her illness. We had zero social life. Most of our old friends have become merely mail friends now. There were times when I hated her. Not just her illness, but her!!

I am fortunate that I still have the love and support of my OH. Not every realtionship can survive the impact that Dementia had on our day to day living..

The emotional impact of Dementia on the families and carers can never be underestimated. If this was an illness for which there was a cure, then irrespective of how long the treatment was or how gruelling, you could learn to live with the horrendous swings of emotion. However no two days are the same, there can never be a level playing field. You never know what each day will bring....will today be a tsunami or a milk pond? The constant grinding down of the human spirit calls for huge efforts to remain cheerful in the face of irrational hatred or disaffection. But, because we care...... we buckle on a smile and say " I'm fine". and we hide the tears again.