Struggling

[anonymous 123]

I have cared for my mum who has vascular dementia and mixed alzheimers for the past 5 years in her own home. I made a promise I would never put her into a care home. She lived at home with my father who also needed help. I gave up my job to care for them both. Five months ago we had a crisis and I had to place mum in a care home. She stopped sleeping through the night. She was awake all night. Taking her clothes off and weeing everywhere. It became unsafe. Mum has settled well into the care home. My father and I visit her daily. The problem is that I am really struggling. Every day I come home and i just feel dreadful. I feel like I have the weight of the world on my shoulders. My husband thinks I visit too often. I just feel guilty if I don't. My mum also has bladder cancer and lots of other health problems. I am on edge waiting for to get really ill. I am still caring for my dad everyday.How does every one else cope. Thanks for reading

 

[jennifer1967]

I have cared for my mum who has vascular dementia and mixed alzheimers for the past 5 years in her own home. I made a promise I would never put her into a care home. She lived at home with my father who also needed help. I gave up my job to care for them both. Five months ago we had a crisis and I had to place mum in a care home. She stopped sleeping through the night. She was awake all night. Taking her clothes off and weeing everywhere. It became unsafe. Mum has settled well into the care home. My father and I visit her daily. The problem is that I am really struggling. Every day I come home and i just feel dreadful. I feel like I have the weight of the world on my shoulders. My husband thinks I visit too often. I just feel guilty if I don't. My mum also has bladder cancer and lots of other health problems. I am on edge waiting for to get really ill. I am still caring for my dad everyday.How does every one else cope. Thanks for reading

you need to stop punishing yourself and feeling guilty. you had no choice but to move her to a carehome. you couldnt know what was going to happen in the future, no-one does. concentrate on looking after your dad. you are caring for your mum but more distant. maybe take some time off or dont visit as often. the home can always phone you if needed.

 

[Whisperer]

Dear @anonymous 123

I am an ex carer who visits this site. I made a promise after my mum died that I would not walk on by if I read a post from someone who clearly was reaching out for help. I would not proverbially cross the road and walk on by. I had a period when I forgot that promise but not now or in the future. Let me start with two basic points. Firstly we have never met or spoken. My caring experience will have been different to your own in so many ways, to a degree any answer I give will be incomplete. Secondly my words are given with the best of intentions, you have to make of them as you will. As my mum would have said they will fall in place only as the recipient interprets them.

Okay your question is perhaps the most important one a carer can ask. How do you keep going, deal with setbacks, physical, emotional and mental demands. There is no one fits all template but please consider the following points.

1) For a moment please stop and acknowledge that at a very basic and important level you are coping. You are caring for your dad, visiting your mum daily and importantly enabling your dad to see her as well. You gave up employment to care for them both. Your emotional stress is based on your deep love for them. Many people would not have achieved what you have already done. Give yourself a lot of credit for what you have achieved to date.
2) Please let go of the guilt feeling. Easier said than done. Is it based on a feeling you let your mum down by arranging for her to go into a care home? Just read what was going wrong in her life. You had no choice to keep her safe. Your mum has settled well into the care home. The only person “judging” you is your own voice in your head. Please accept what you have done todate. Your love for your parents is clear. I bet they both appreciate you as a loving, generous, kind and devoted daughter.
3) Perhaps another point to consider is the “perfectionist” voice. This is not personal criticism. Generally carers can get into a situation where they think there must always have been something else they could have done, one more action which could have made things better. Please accept that is not realistic or good for you. I learnt a maxim from the carers support group I went to. “Good enough will do, perfection is for angels”. You must do what you are comfortable with, but let go of the guilt and if applicable the perfection driver. Perhaps have days where you do not visit the care home, but instead enjoy a day with your dad away from the care home environment.
4) The end of my caring role came in deeply stressful circumstances, at the height of the COVID lockdowns, after nearly a year of total social isolation. I found it very hard in that period to switch off, try to conserve my physical and emotional strength. I found gentle music, meditation, sitting us both in the garden helped. Something to however briefly take your mind away from the stresses of caring.
5) Now the hardest suggestion. I am not being insensitive and I wished someone had said this to me whilst I was caring. One day that role will end, your loved ones will be at peace. Enjoy their company today and the tomorrows yet to come. Accept that your stress is the price of caring for loved ones. It will end one day and your life will move forward on a different track. You have a loving partner. You have years ahead of you beyond the caring role. It is not selfish nor anything to feel guilty about to reflect on that possibility. I would suggest the opposite is true. I was so focused on the caring role, when mum died I was utterly lost. No loved one, the purpose of my life dying with her. I gently suggest one coping mechanism available to you is to remind yourself at some unknown future point in time the caring role will end. In dark moments presently that thought might give you the strength to carry on. Just a suggestion, make of it what you will.

Finally please remember you are part of the solution not the problem. There are no examinations for carers to take to get the relevant skills. No training manual. You seem to be doing very well in the caring role. Just allow sometime to care for yourself. Perhaps a past interest or hobby needs thinking about even if not actually done at present. Listen to your emotions but the quiet voices of self criticism, doubt, guilt, etc, in your mind need to be challenged. I hope something I have said strikes a chord, my intentions are well meaning. My best wishes for the future.

 

[Kristo]

Dear @anonymous 123

I am an ex carer who visits this site. I made a promise after my mum died that I would not walk on by if I read a post from someone who clearly was reaching out for help. I would be proverbially cross the road. I had a period when I forgot that promise but not now or in the future. Let me start with two basic points. Firstly we have never met or spoken. My caring experience will have been different to your own in so many ways, to a degree any answer I give will be incomplete. Secondly my words are given with the best of intentions, you have to make of them as you will. As my mum would have said they will fall in place only as the recipient interprets them.

Okay your question is perhaps the most important one a carer can ask. How do you keep going, deal with setbacks, physical, emotional and mental demands. There is no one fits all template but please consider the following points.

1) For a moment please stop and acknowledge that at a very basic and important level you are coping. You are caring for your dad, visiting your mum daily and importantly enabling your dad to see her as well. You gave up employment to care for them both. Your emotional stress is based on your deep love for them. Many people would not have achieved what you have already done. Give yourself a lot of credit for what you have achieved to date.
2) Please let go of the guilt feeling. Easier said than done. Is it based on a feeling you let your mum down by arranging for her to go into a care home? Just read what was going wrong in her life. You had no choice to keep her safe. Your mum has settled well into the care home. The only person “judging” you is your own voice in your head. Please accept what you have done todate. Your love for your parents is clear. I bet they both appreciate you as a loving, generous, kind and devoted daughter.
3) Perhaps another point to consider is the “perfectionist” voice. This is not personal criticism. Generally carers can get into a situation where they think there must always have been something else they could have done, one more action which could have made things better. Please accept that is not realistic or good for you. I learnt a maxim from the carers support group I went to. “Good enough will do, perfection is for angels”. You must do what you are comfortable with, but let go of the guilt and if applicable the perfection driver. Perhaps have days where you do not visit the care home, but instead enjoy a day with your dad away from the care home environment.
4) The end of my caring role came in deeply stressful circumstances, at the height of the COVID lockdowns, after nearly a year of total social isolation. I found it very hard in that period to switch off, try to conserve my physical and emotional strength. I found gentle music, meditation, sitting us both in the garden helped. Something to however briefly take your mind away from the stresses of caring.
5) Now the hardest suggestion. I am not being insensitive and I wished someone had said this to me whilst I was caring. One day that role will end, your loved ones will be at peace. Enjoy their company today and the tomorrows yet to come. Accept that your stress is the price of caring for loved ones. It will end one day and your life will move forward on a different track. You have a loving partner. You have years ahead of you beyond the caring role. It is not selfish nor anything to feel guilty about to reflect on that possibility. I would suggest the opposite is true. I was so focused on the caring role, when mum died I was utterly lost. No loved one, the purpose of my life dying with her. I gently suggest one coping mechanism available to you is to remind yourself at some unknown future point in time the caring role will end. In dark moments presently that thought might give you the strength to carry on. Just a suggestion, make of it what you will.

Finally please remember you are part of the solution not the problem. There are no examinations for carers to take to get the relevant skills. No training manual. You seem to be doing very well in the caring role. Just allow sometime to care for yourself. Perhaps a past interest or hobby needs thinking about even if not actually done at present. Listen to your emotions but the quiet voices of self criticism, doubt, guilt, etc, in your mind need to be challenged. I hope something I have said strikes a chord, my intentions are well meaning. My best wishes for the future.

This is such a lovely reflection for those of us in a similar situation, thank you!

 

[canary]

Oh @anonymous 123 , I agree with everything that whisperer has said, but I bet it's that promise that is getting to you and making you feel that you have let her down.

You haven't let her down at all, of course. You have done what is the very best for her. Doing what they need rather than what they want is an act of love, but that promise is still weighing you down. It is a promise that can very seldom be kept because we dont understand how much care they will need as the disease progresses. Try and let go of the guilt and be proud of what you have achieved. You haven't abandoned her - she is safe and settled now and although you will always be involved you can begin to trust the care home and begin to let go of the reins now
xx

 

[XT2]

Dear @anonymous 123

I am an ex carer who visits this site. I made a promise after my mum died that I would not walk on by if I read a post from someone who clearly was reaching out for help. I would not proverbially cross the road and walk on by. I had a period when I forgot that promise but not now or in the future. Let me start with two basic points. Firstly we have never met or spoken. My caring experience will have been different to your own in so many ways, to a degree any answer I give will be incomplete. Secondly my words are given with the best of intentions, you have to make of them as you will. As my mum would have said they will fall in place only as the recipient interprets them.

Okay your question is perhaps the most important one a carer can ask. How do you keep going, deal with setbacks, physical, emotional and mental demands. There is no one fits all template but please consider the following points.

1) For a moment please stop and acknowledge that at a very basic and important level you are coping. You are caring for your dad, visiting your mum daily and importantly enabling your dad to see her as well. You gave up employment to care for them both. Your emotional stress is based on your deep love for them. Many people would not have achieved what you have already done. Give yourself a lot of credit for what you have achieved to date.
2) Please let go of the guilt feeling. Easier said than done. Is it based on a feeling you let your mum down by arranging for her to go into a care home? Just read what was going wrong in her life. You had no choice to keep her safe. Your mum has settled well into the care home. The only person “judging” you is your own voice in your head. Please accept what you have done todate. Your love for your parents is clear. I bet they both appreciate you as a loving, generous, kind and devoted daughter.
3) Perhaps another point to consider is the “perfectionist” voice. This is not personal criticism. Generally carers can get into a situation where they think there must always have been something else they could have done, one more action which could have made things better. Please accept that is not realistic or good for you. I learnt a maxim from the carers support group I went to. “Good enough will do, perfection is for angels”. You must do what you are comfortable with, but let go of the guilt and if applicable the perfection driver. Perhaps have days where you do not visit the care home, but instead enjoy a day with your dad away from the care home environment.
4) The end of my caring role came in deeply stressful circumstances, at the height of the COVID lockdowns, after nearly a year of total social isolation. I found it very hard in that period to switch off, try to conserve my physical and emotional strength. I found gentle music, meditation, sitting us both in the garden helped. Something to however briefly take your mind away from the stresses of caring.
5) Now the hardest suggestion. I am not being insensitive and I wished someone had said this to me whilst I was caring. One day that role will end, your loved ones will be at peace. Enjoy their company today and the tomorrows yet to come. Accept that your stress is the price of caring for loved ones. It will end one day and your life will move forward on a different track. You have a loving partner. You have years ahead of you beyond the caring role. It is not selfish nor anything to feel guilty about to reflect on that possibility. I would suggest the opposite is true. I was so focused on the caring role, when mum died I was utterly lost. No loved one, the purpose of my life dying with her. I gently suggest one coping mechanism available to you is to remind yourself at some unknown future point in time the caring role will end. In dark moments presently that thought might give you the strength to carry on. Just a suggestion, make of it what you will.

Finally please remember you are part of the solution not the problem. There are no examinations for carers to take to get the relevant skills. No training manual. You seem to be doing very well in the caring role. Just allow sometime to care for yourself. Perhaps a past interest or hobby needs thinking about even if not actually done at present. Listen to your emotions but the quiet voices of self criticism, doubt, guilt, etc, in your mind need to be challenged. I hope something I have said strikes a chord, my intentions are well meaning. My best wishes for the future.

Thank you so much for these kind and thoughtful words.

 

[Ellie2018]

Dear @anonymous 123

I am an ex carer who visits this site. I made a promise after my mum died that I would not walk on by if I read a post from someone who clearly was reaching out for help. I would not proverbially cross the road and walk on by. I had a period when I forgot that promise but not now or in the future. Let me start with two basic points. Firstly we have never met or spoken. My caring experience will have been different to your own in so many ways, to a degree any answer I give will be incomplete. Secondly my words are given with the best of intentions, you have to make of them as you will. As my mum would have said they will fall in place only as the recipient interprets them.

Okay your question is perhaps the most important one a carer can ask. How do you keep going, deal with setbacks, physical, emotional and mental demands. There is no one fits all template but please consider the following points.

1) For a moment please stop and acknowledge that at a very basic and important level you are coping. You are caring for your dad, visiting your mum daily and importantly enabling your dad to see her as well. You gave up employment to care for them both. Your emotional stress is based on your deep love for them. Many people would not have achieved what you have already done. Give yourself a lot of credit for what you have achieved to date.
2) Please let go of the guilt feeling. Easier said than done. Is it based on a feeling you let your mum down by arranging for her to go into a care home? Just read what was going wrong in her life. You had no choice to keep her safe. Your mum has settled well into the care home. The only person “judging” you is your own voice in your head. Please accept what you have done todate. Your love for your parents is clear. I bet they both appreciate you as a loving, generous, kind and devoted daughter.
3) Perhaps another point to consider is the “perfectionist” voice. This is not personal criticism. Generally carers can get into a situation where they think there must always have been something else they could have done, one more action which could have made things better. Please accept that is not realistic or good for you. I learnt a maxim from the carers support group I went to. “Good enough will do, perfection is for angels”. You must do what you are comfortable with, but let go of the guilt and if applicable the perfection driver. Perhaps have days where you do not visit the care home, but instead enjoy a day with your dad away from the care home environment.
4) The end of my caring role came in deeply stressful circumstances, at the height of the COVID lockdowns, after nearly a year of total social isolation. I found it very hard in that period to switch off, try to conserve my physical and emotional strength. I found gentle music, meditation, sitting us both in the garden helped. Something to however briefly take your mind away from the stresses of caring.
5) Now the hardest suggestion. I am not being insensitive and I wished someone had said this to me whilst I was caring. One day that role will end, your loved ones will be at peace. Enjoy their company today and the tomorrows yet to come. Accept that your stress is the price of caring for loved ones. It will end one day and your life will move forward on a different track. You have a loving partner. You have years ahead of you beyond the caring role. It is not selfish nor anything to feel guilty about to reflect on that possibility. I would suggest the opposite is true. I was so focused on the caring role, when mum died I was utterly lost. No loved one, the purpose of my life dying with her. I gently suggest one coping mechanism available to you is to remind yourself at some unknown future point in time the caring role will end. In dark moments presently that thought might give you the strength to carry on. Just a suggestion, make of it what you will.

Finally please remember you are part of the solution not the problem. There are no examinations for carers to take to get the relevant skills. No training manual. You seem to be doing very well in the caring role. Just allow sometime to care for yourself. Perhaps a past interest or hobby needs thinking about even if not actually done at present. Listen to your emotions but the quiet voices of self criticism, doubt, guilt, etc, in your mind need to be challenged. I hope something I have said strikes a chord, my intentions are well meaning. My best wishes for the future.

What fab sage words. Even though you’re not responding to me, it has helped. Thank you.

 

[Ellie2018]

I think that you have done the right thing but it doesn’t always feel like it. Try to enjoy the time with both parents but with some kindness to yourself too. I’m sure before this your mum would have said that she wouldn’t want you to feel like this. This is a bit off the wall for some but I have had hypnotherapy for a couple of things and it really helped change my thought patterns, at some stage I will also do it for our Alzheimer’s journey although not needing it yet. It really worked for me - I was moving house because I could hear a road hundred of yards away and now I’m - what road! Be kind to you and good luck.

 

[Natalie J]

I had a couple of wake up calls yesterday. I was talking with one of my lodgers (she's a dentist with some considerable experience, and has worked in care homes before and has had relatives with dementia) and I told her I thought my relative was doing better than I was at the moment. My relative can't remember most of the things that go wrong for her and that she forgets and is fairly content most of the time, whereas it is an awful lot for me to cope with and I've been finding it more distressing than she has been lately. My lodger told me about a patient of hers that became a full time carer for his mother at 28 (I think his dad had already died). His whole life was consumed by this role and when she eventually died his inability to cope with life on the other side as a result of having "nothing else" in his life, resulted in him being sectioned. Perhaps this was an extreme example, but I'm glad she mentioned it as it made me think very seriously about just how wrong things can go for you as a carer, if you don't get that balance right.

Same evening I heard a proverb being quoted, "A wise person sees danger ahead and avoids it, but a foolish person keeps going and gets into trouble." Maybe obvious, but I really needed to hear it. This just reinforced what I was already thinking about needing to take steps / put things in place to make sure I don't go down with the ship caring for my relative. It seems to me that your own demise is pretty much inevitable and you WILL come to harm as a carer for someone with dementia, IF you don't take proactive steps to prevent that. I'm starting to realise it's not just a case of some people being able to cope better than others and needing to muddle along and hope for the best in terms of your own situation. It seems to me that giving due consideration to your own self care and acting on those needs, is not a luxury in these circumstances, but an absolute essential. Once we get exhausted and distressed, we can't think straight either, and the emotions will take over and we'll act out of guilt and fear and make poor decisions that might be best for the person we are caring for, but detrimental for ourselves, hence the need to be proactive. I haven't got as far as working out what that is going to have to look like in my case, but I feel like it's progress, so just thought I'd share in case anyone else found it useful, and I can look back and remind myself of what I said!

 

[Suzysheep01]

I suffer from awful guilt from having to place my mum in a nursing home. She even asked me if she could come live with me, my husband and son in the first few days… in a very small sad voice. It absolutely broke me because I had to put my autistic son first and having her deteriorate in front of him is not an option. The only bit of solace I have is that I know that she would be absolutely devastated if she knew how ill and stressed trying to keep her safe was making me ( she is a type 1 diabetic) .… and if she was in her right mind would totally agree with the decision to have her live in the nursing home. I visit most days to keep an eye on her ( god it’s so hard to give up the micro management of her diabetes!) and because she’s used to seeing me every day.
forgive yourself. I’m sure your mum would have felt the same as mine .

 

[Whisperer]

I had a couple of wake up calls yesterday. I was talking with one of my lodgers (she's a dentist with some considerable experience, and has worked in care homes before and has had relatives with dementia) and I told her I thought my relative was doing better than I was at the moment. My relative can't remember most of the things that go wrong for her and that she forgets and is fairly content most of the time, whereas it is an awful lot for me to cope with and I've been finding it more distressing than she has been lately. My lodger told me about a patient of hers that became a full time carer for his mother at 28 (I think his dad had already died). His whole life was consumed by this role and when she eventually died his inability to cope with life on the other side as a result of having "nothing else" in his life, resulted in him being sectioned. Perhaps this was an extreme example, but I'm glad she mentioned it as it made me think very seriously about just how wrong things can go for you as a carer, if you don't get that balance right.

Same evening I heard a proverb being quoted, "A wise person sees danger ahead and avoids it, but a foolish person keeps going and gets into trouble." Maybe obvious, but I really needed to hear it. This just reinforced what I was already thinking about needing to take steps / put things in place to make sure I don't go down with the ship caring for my relative. It seems to me that your own demise is pretty much inevitable and you WILL come to harm as a carer for someone with dementia, IF you don't take proactive steps to prevent that. I'm starting to realise it's not just a case of some people being able to cope better than others and needing to muddle along and hope for the best in terms of your own situation. It seems to me that giving due consideration to your own self care and acting on those needs, is not a luxury in these circumstances, but an absolute essential. Once we get exhausted and distressed, we can't think straight either, and the emotions will take over and we'll act out of guilt and fear and make poor decisions that might be best for the person we are caring for, but detrimental for ourselves, hence the need to be proactive. I haven't got as far as working out what that is going to have to look like in my case, but I feel like it's progress, so just thought I'd share in case anyone else found it useful, and I can look back and remind myself of what I said!

Dear @Natalie J
Thank you. You have put into words far better than I was trying to do in point 5) of my earlier posting. It is so easy in the caring role to slip into not thinking about yourself, I can do that after this is all over. The greatest difficulty I had after mum died was the emptiness in my life, compounded by ongoing COVID restrictions. I had lost my loved one, my caring role had become my life and it had also gone. I think many ex carers struggle to re engage with “normal” life after the years of increasing physical, mental and emotional stresses which make up the caring role. And also for many the gradual increasing loneliness and isolation of the caring role. There is little meaningful support for carers outside of family and friends. I found myself all alone, exhausted and having to start at base camp rebuilding a new life when my caring role ended.

I just wished someone had explained that point to me during my caring role. It is not selfish to plan for the time after caring, maintain hobbies and interests as best you can, etc. But in the caring role such thoughts can feel like betrayal of your loved one, which in turn can bring on feelings of guilt. So thank you again for putting the point I was trying to make in a far better way. Best wishes for the future.

 

[sdmhred]

I also had a friend whose sister was a carer. When the father who she cared for died she couldn’t cope - especially when the house had to be sold. She ended up spending all her inheritance living in a hotel rather than sorting herself out. She then ended up in a homeless hostel as an alcoholic 😢😢 she’s died recently from alcohol complications.

I was so worriEd about becoming her - still am a little 🙈🙈 but to that end I have hung on to part time work, walking each day ….and actually when mum is bad I deliberately contact friends or do things to ‘invest in my future’. I am helped that mum said before she lost capacity that she didn’t want me to ruin my life caring for her.

Please all bash the guilt monster away and do stuff for you. 🌂🪵🥕🥖🏏🪃🏹🩼🔨🧹 ( various ways to get rid of guilt monster - end of the working day sorry 🤣🤣)

 

[Whisperer]

This is such a lovely reflection for those of us in a similar situation, thank you!

Dear @Kristo you are more than welcome. It is nice to know my words can be of help. In my caring role I attended a carers group and the carers spent time alone with a support worker. Their loved ones were looked after by volunteers. Sometimes very raw emotions were expressed by carers pushed to breaking point. The motto was “what gets said in the room stays in the room”.

When mum died I was terrified one day Dementia would come for me. I am now alone in the world. Fear I must confess made me run for the hills. I am now a lurker on this site and a volunteer at a weekly Dementia group. I help with drinks, games of Dominos, etc. Carers go into a room together. I have no idea what is said in the room, no wish to know confidences, but life has come full circle for me. I know what it meant to be in that type of room a few years ago. Now indirectly, without ever speaking to them, I can in a small way help others. That is enough for me.

I can only wish you the best in your caring role. Please stay in touch with this forum, in my darkest moments it helped me a great deal. You can post anytime of the day, seeking help or advice, have a rant, etc, and someone will reply fairly quickly. No one wanted to join the Dementia carers team, but that is the hand fate dealt to us. That said this forum is full of warm, helpful and sensible people always willing to help.

 

[Natalie J]

I suffer from awful guilt from having to place my mum in a nursing home. She even asked me if she could come live with me, my husband and son in the first few days… in a very small sad voice. It absolutely broke me because I had to put my autistic son first and having her deteriorate in front of him is not an option. The only bit of solace I have is that I know that she would be absolutely devastated if she knew how ill and stressed trying to keep her safe was making me ( she is a type 1 diabetic) .… and if she was in her right mind would totally agree with the decision to have her live in the nursing home. I visit most days to keep an eye on her ( god it’s so hard to give up the micro management of her diabetes!) and because she’s used to seeing me every day.
forgive yourself. I’m sure your mum would have felt the same as mine .

@Suzysheep01 sending big hugs to you. xx

 

[Whisperer]

What fab sage words. Even though you’re not responding to me, it has helped. Thank you.

Dear @Ellie2018 you are more than welcome. I am glad my words have helped you. Please take care and my best wishes for the future.

 

[Natalie J]

Dear @Natalie J
Thank you. You have put into words far better than I was trying to do in point 5) of my earlier posting. It is so easy in the caring role to slip into not thinking about yourself, I can do that after this is all over. The greatest difficulty I had after mum died was the emptiness in my life, compounded by ongoing COVID restrictions. I had lost my loved one, my caring role had become my life and it had also gone. I think many ex carers struggle to re engage with “normal” life after the years of increasing physical, mental and emotional stresses which make up the caring role. And also for many the gradual increasing loneliness and isolation of the caring role. There is little meaningful support for carers outside of family and friends. I found myself all alone, exhausted and having to start at base camp rebuilding a new life when my caring role ended.

I just wished someone had explained that point to me during my caring role. It is not selfish to plan for the time after caring, maintain hobbies and interests as best you can, etc. But in the caring role such thoughts can feel like betrayal of your loved one, which in turn can bring on feelings of guilt. So thank you again for putting the point I was trying to make in a far better way. Best wishes for the future.

@Whisperer , I think your post was wonderful. I was pondering earlier whether I should go as far as creating a chart to monitor how well I am doing at keeping that balance in check. It might seem overly analytical but I thought it might help me step back and evaluate things more clearly.

I was listening to a talk recently where the speaker said our actions can be categorised as: 1)Those that benefit us and benefit others (win win), 2) those that harm us and benefit others, 3) Those that benefit us and harm others, and 4) those that harm us and harm others.

I guess 'neutral' is another possible outcome for ourselves and others.

I haven't developed my thoughts much more than that, but I wondered how beneficial it might be to reflect on each day / week and try to assess whether most of what we did was beneficial / neutral / harmful to ourselves and to the person we care for. Or to chart how many things I did that were for my well being today (such as taking a walk or a yoga class) and how many things will benefit my future (keeping up with friends and maintaining skills for example).

I thought it might help me maintain focus and keep me accountable to myself for my own self care.

I'll have to let these ideas brew!

 

[sdmhred]

Great idea @Natalie J

 

[Toopie28]

I had a couple of wake up calls yesterday. I was talking with one of my lodgers (she's a dentist with some considerable experience, and has worked in care homes before and has had relatives with dementia) and I told her I thought my relative was doing better than I was at the moment. My relative can't remember most of the things that go wrong for her and that she forgets and is fairly content most of the time, whereas it is an awful lot for me to cope with and I've been finding it more distressing than she has been lately. My lodger told me about a patient of hers that became a full time carer for his mother at 28 (I think his dad had already died). His whole life was consumed by this role and when she eventually died his inability to cope with life on the other side as a result of having "nothing else" in his life, resulted in him being sectioned. Perhaps this was an extreme example, but I'm glad she mentioned it as it made me think very seriously about just how wrong things can go for you as a carer, if you don't get that balance right.

Same evening I heard a proverb being quoted, "A wise person sees danger ahead and avoids it, but a foolish person keeps going and gets into trouble." Maybe obvious, but I really needed to hear it. This just reinforced what I was already thinking about needing to take steps / put things in place to make sure I don't go down with the ship caring for my relative. It seems to me that your own demise is pretty much inevitable and you WILL come to harm as a carer for someone with dementia, IF you don't take proactive steps to prevent that. I'm starting to realise it's not just a case of some people being able to cope better than others and needing to muddle along and hope for the best in terms of your own situation. It seems to me that giving due consideration to your own self care and acting on those needs, is not a luxury in these circumstances, but an absolute essential. Once we get exhausted and distressed, we can't think straight either, and the emotions will take over and we'll act out of guilt and fear and make poor decisions that might be best for the person we are caring for, but detrimental for ourselves, hence the need to be proactive. I haven't got as far as working out what that is going to have to look like in my case, but I feel like it's progress, so just thought I'd share in case anyone else found it useful, and I can look back and remind myself of what I said!

Thank you, thank you, thank you!!

Needed this so much and I will print and keep reading.

You are absolutely right. I lost my job. I lost a lot of friends (starting to get them back). I lost my health. I lost my relationships. I was given a wake up call 6 months ago and still being foolish.

I'm about to go home in 2 weeks and I was feeling sooooo guilty and a teeny part of me said: Enough. You can't do this anymore. You will have another heart attack, there won't be anyone to look after you, you'll never get a job, you'll be homeless and alone and all because you continue to want to fight dementia.

My whole life IS consumed by my mother and I am so scared to try to have a life as I don't even know where to start or how but I have to, we all have to.

 

[sdmhred]

I think what does bother me is how to relate to the ‘normal world’ when dementia and it’s struggles has been my world. Chatting about things that don’t matter, going to the pub, trivial stuff doesn’t appeal any more…..i guess maybe it will again in the future 🤷‍♀️🤷‍♀️🤷‍♀️

 

[Kevinl]

If ever thought me daughter would be posting as you have about me, firstly I'd be so proud of her then tell her to put me in a home.
Thank you for posting. K