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Something that might help

Whisperer

Registered User
Mar 27, 2017
257
0
Southern England
Dear All

I can only hope I get the balance right here. Members of this site helped me over several years, care for my mum in relation to her developing Dementia. Reading threads raised by others helped to guide me as well. Just being part of the forum helped to reduce the isolation of living with and caring for my mum, who was drifting away from me, particularly during lockdowns.

I stress my comments will not help in the initial days after you have lost your loved one. Mum died on 2nd February 2021. For several weeks I was beside myself with emotional grief, could not really eat, my days were empty with the caring role now over. Lockdown meant I remained physically isolated. Mum’s funeral did not happen until 1st March, due to delays caused by COVID-19 restrictions and the number of deaths. Mum’s funeral service was odd, but all that lockdown rules would allow.

I am not saying I am over mum’s death. The caring role, the upset of mum’s sudden heart failure, a few days sitting with mum undergoing hospital palliative care, etc, are going to be with me the rest of my life. However their ability to reduce me to uncontrollable emotional grief is easing. Several factors have helped me start to get over mum’s death. I list them below in no particular order. I hope they might ease the emotional upset of others suffering from the loss of a loved one who had Dementia. The loss in those circumstances involves a strange mix of emotions not found with non Dementia death.

1) The funeral service was very upsetting for the family but it has helped the process of recovery. Knowing mum has physically left the earth made her death very real. I cannot explain how but it allowed me to accept her loss, as before I could not. After the service that afternoon I walked down the back alley me and mum walked down regularly during lockdowns. The sun was out and for the first time since her death I remembered the spring and summer walks of 2020, after we entered the first lockdown. I recognised how over the months mum had not been able to go so far, needed more rests, etc. In reality her physical strength was declining, but I did not get upset, just acknowledged having even shorter walks helped her. The alley conversations we had about her youth came back to me. The white cat who use to escort us of “his patch” made an appearance. I had recaptured the alley as a positive thing I shared with mum, not a negative measure of her decline.

2) At mum’s funeral service the “Dash poem” was read out. If you have not heard it before like me, then please search under google. The little dash between the dates of birth and death is the most important thing. Mum almost got to 90yo, recent years were increasingly shaped by her developing Dementia, but that was not all of her dash. Mum did a great deal, helped others, older pre Dementia memories are coming back to me. I will never forget the problems of her illness in recent years, but very gradually they are becoming only a small part of when I think about mum. I have started an exercise book in which I note down things I remember about mum from over the years. Slowly I am getting a better sense of balance. Full time caring for mum was getting progressively harder, it had come to define my life and very significantly my relationship with mum. Now I can increasingly remember her as a son, not her carer. I hope that makes some sense.

3) Now for a confession which might help others. I tried to talk to someone at CRUSE bereavement services, but they were to busy and suggested I contact the Samaritans. Initially my reaction was no to doing so. I did not feel suicidal and I thought that was the purpose of that organisation. I sent an email to them outlining my recent loss, upset, continued isolation, etc. The reply stressed that it was perfectly okay to ring them to discuss matters so I did. Spoke to a lovely lady for about an hour, covered a lot of matters, got a few suggestions. Not sure I would have done this without the ongoing isolation of lockdown, but it did a lot of good. As mum would say “you live and learn”. The Samaritans do more than what my understanding of their service was.

4) Talking to my sister on the phone shortly after mum’s death she advised mum would want us to go forward positively with our lives, not have an extended period of grief. Remember her, cherish the memories, but let go of the grief. I was to upset to start with. I heard the words but did not take them in, until a walk in the sunshine down me and mum’s alley the afternoon after her funeral. For the first time in weeks I smiled, saw things a little more positively, a fuzzy non caring future briefly emerged, whereas before I could not think of the future.

Okay a long post. Helped me doing so. I have managed it without great emotional upset. I am now going for a walk again in the sunshine, starting off up the alley. I hope my words can help just one other person. I owe this site and it’s membership a great deal. I need to get mum’s affairs settled, decide on a future location, try and get back into employment, grow myself again. Part of that future will include the world of Dementia. Mum would quote her dad who said “nothing is wasted”. Before mum got ill I knew nothing about Dementia, the isolation of Carers, the failings of Adult Social Care, etc. I stumbled into it with mum, but perhaps that was fate playing a role not only for mum, but for me as well. I intend to get settled then do voluntary work in the Dementia area. I needed help, advice, guidance and got it from the voluntary sector and this forum. On Monday no doubt several people up and down the country will get a Dementia diagnosis. Their partners and family will also get it, but not perhaps realise its full significance to them, at that point in time. They to will need help. Sometime in the future I will help where I can as a volunteer.
 

Sarasa

Volunteer Host
Apr 13, 2018
2,809
0
Thank you @Whisperer, that was a very helpful post. I am glad that you are finding a way forward. I find walks very helpful too, and the fact that at times I can feel spring coming helps too. Your mother sounds a wonderful woman, and I'm glad you are starting to remember the times pre-dementia. The information about The Samaritans is really useful as well.
My dad didn't have dementia, but he had a serious heart condition which meant he was unlikely to live to a great old age. He knew that and packed as much as he could into his last ten years. He always said he didn't want us to mourn as he'd had a life doing exactly what he wanted to do. As that included spending six months of the year on his narrow boat I don't think he could have coped with the infirmities that very old age would have bought. I found it hard to follow his instructions, but as the years have gone by I'm very grateful to him for the way he approached death and the memories he left behind.
 

Chaplin

Registered User
May 24, 2015
113
0
Bristol
Dear All

I can only hope I get the balance right here. Members of this site helped me over several years, care for my mum in relation to her developing Dementia. Reading threads raised by others helped to guide me as well. Just being part of the forum helped to reduce the isolation of living with and caring for my mum, who was drifting away from me, particularly during lockdowns.

I stress my comments will not help in the initial days after you have lost your loved one. Mum died on 2nd February 2021. For several weeks I was beside myself with emotional grief, could not really eat, my days were empty with the caring role now over. Lockdown meant I remained physically isolated. Mum’s funeral did not happen until 1st March, due to delays caused by COVID-19 restrictions and the number of deaths. Mum’s funeral service was odd, but all that lockdown rules would allow.

I am not saying I am over mum’s death. The caring role, the upset of mum’s sudden heart failure, a few days sitting with mum undergoing hospital palliative care, etc, are going to be with me the rest of my life. However their ability to reduce me to uncontrollable emotional grief is easing. Several factors have helped me start to get over mum’s death. I list them below in no particular order. I hope they might ease the emotional upset of others suffering from the loss of a loved one who had Dementia. The loss in those circumstances involves a strange mix of emotions not found with non Dementia death.

1) The funeral service was very upsetting for the family but it has helped the process of recovery. Knowing mum has physically left the earth made her death very real. I cannot explain how but it allowed me to accept her loss, as before I could not. After the service that afternoon I walked down the back alley me and mum walked down regularly during lockdowns. The sun was out and for the first time since her death I remembered the spring and summer walks of 2020, after we entered the first lockdown. I recognised how over the months mum had not been able to go so far, needed more rests, etc. In reality her physical strength was declining, but I did not get upset, just acknowledged having even shorter walks helped her. The alley conversations we had about her youth came back to me. The white cat who use to escort us of “his patch” made an appearance. I had recaptured the alley as a positive thing I shared with mum, not a negative measure of her decline.

2) At mum’s funeral service the “Dash poem” was read out. If you have not heard it before like me, then please search under google. The little dash between the dates of birth and death is the most important thing. Mum almost got to 90yo, recent years were increasingly shaped by her developing Dementia, but that was not all of her dash. Mum did a great deal, helped others, older pre Dementia memories are coming back to me. I will never forget the problems of her illness in recent years, but very gradually they are becoming only a small part of when I think about mum. I have started an exercise book in which I note down things I remember about mum from over the years. Slowly I am getting a better sense of balance. Full time caring for mum was getting progressively harder, it had come to define my life and very significantly my relationship with mum. Now I can increasingly remember her as a son, not her carer. I hope that makes some sense.

3) Now for a confession which might help others. I tried to talk to someone at CRUSE bereavement services, but they were to busy and suggested I contact the Samaritans. Initially my reaction was no to doing so. I did not feel suicidal and I thought that was the purpose of that organisation. I sent an email to them outlining my recent loss, upset, continued isolation, etc. The reply stressed that it was perfectly okay to ring them to discuss matters so I did. Spoke to a lovely lady for about an hour, covered a lot of matters, got a few suggestions. Not sure I would have done this without the ongoing isolation of lockdown, but it did a lot of good. As mum would say “you live and learn”. The Samaritans do more than what my understanding of their service was.

4) Talking to my sister on the phone shortly after mum’s death she advised mum would want us to go forward positively with our lives, not have an extended period of grief. Remember her, cherish the memories, but let go of the grief. I was to upset to start with. I heard the words but did not take them in, until a walk in the sunshine down me and mum’s alley the afternoon after her funeral. For the first time in weeks I smiled, saw things a little more positively, a fuzzy non caring future briefly emerged, whereas before I could not think of the future.

Okay a long post. Helped me doing so. I have managed it without great emotional upset. I am now going for a walk again in the sunshine, starting off up the alley. I hope my words can help just one other person. I owe this site and it’s membership a great deal. I need to get mum’s affairs settled, decide on a future location, try and get back into employment, grow myself again. Part of that future will include the world of Dementia. Mum would quote her dad who said “nothing is wasted”. Before mum got ill I knew nothing about Dementia, the isolation of Carers, the failings of Adult Social Care, etc. I stumbled into it with mum, but perhaps that was fate playing a role not only for mum, but for me as well. I intend to get settled then do voluntary work in the Dementia area. I needed help, advice, guidance and got it from the voluntary sector and this forum. On Monday no doubt several people up and down the country will get a Dementia diagnosis. Their partners and family will also get it, but not perhaps realise its full significance to them, at that point in time. They to will need help. Sometime in the future I will help where I can as a volunteer.
I’m sorry for your loss @Whisperer i think your thoughts will strike a cord with many here on the forum so thank you for sharing. I think you’re right, when our loved one receives the diagnosis of dementia, none of us really know how it will play out in the person and how it will affect the lives of those who care for them. Your mum was right as mum’s often are, you live and learn. Pleased you can smile and remember happier times as you walk in the sunshine, I hope you have many more too. Take care,
 

RosettaT

Registered User
Sep 9, 2018
561
0
Mid Lincs
Thank you Whisperer. I've read on here before that when you lose your PWD the memories of how they used to be slowly come back. I hope that is true as I can hardly remember what our life was like only a few short years ago.
I'm sorry for your loss and pleased you feel you want to help others in future, I'm sure those in waiting will appreciate your kindness.
 

Suze99

Registered User
Nov 8, 2020
32
0
Thank you so much for sharing with everyone. I hadn't heard of the poem so just googled it. I lost my mum on 4th January of this year and was really struggling to cope, all I could think of was the end and the bad things. It is so important to remember that there are good memories to look back on that will in time bring comfort.
 

LynneMcV

Volunteer Moderator
May 9, 2012
4,053
0
south-east London
Thank you for such an inspiring post @Whisperer - I am sure it will help many who have found themselves at this same point.

I followed a similar line of thought when my husband passed away in 2018 - especially the need to put what I had learnt over a 6 year period of caring for him to some use. I was much of the mind that there must have been some reason to learning and experiencing what I had during those years and that it would be a waste not to put it to positive use, once I felt ready to do so. I eventually did so, and I haven't regretted that decision.

I wish you continued strength and healing, and when the time is right, may you find the opportunities you are looking for.
 

lollyc

Registered User
Sep 9, 2020
207
0
Dear All

I can only hope I get the balance right here. Members of this site helped me over several years, care for my mum in relation to her developing Dementia. Reading threads raised by others helped to guide me as well. Just being part of the forum helped to reduce the isolation of living with and caring for my mum, who was drifting away from me, particularly during lockdowns.

I stress my comments will not help in the initial days after you have lost your loved one. Mum died on 2nd February 2021. For several weeks I was beside myself with emotional grief, could not really eat, my days were empty with the caring role now over. Lockdown meant I remained physically isolated. Mum’s funeral did not happen until 1st March, due to delays caused by COVID-19 restrictions and the number of deaths. Mum’s funeral service was odd, but all that lockdown rules would allow.

I am not saying I am over mum’s death. The caring role, the upset of mum’s sudden heart failure, a few days sitting with mum undergoing hospital palliative care, etc, are going to be with me the rest of my life. However their ability to reduce me to uncontrollable emotional grief is easing. Several factors have helped me start to get over mum’s death. I list them below in no particular order. I hope they might ease the emotional upset of others suffering from the loss of a loved one who had Dementia. The loss in those circumstances involves a strange mix of emotions not found with non Dementia death.

1) The funeral service was very upsetting for the family but it has helped the process of recovery. Knowing mum has physically left the earth made her death very real. I cannot explain how but it allowed me to accept her loss, as before I could not. After the service that afternoon I walked down the back alley me and mum walked down regularly during lockdowns. The sun was out and for the first time since her death I remembered the spring and summer walks of 2020, after we entered the first lockdown. I recognised how over the months mum had not been able to go so far, needed more rests, etc. In reality her physical strength was declining, but I did not get upset, just acknowledged having even shorter walks helped her. The alley conversations we had about her youth came back to me. The white cat who use to escort us of “his patch” made an appearance. I had recaptured the alley as a positive thing I shared with mum, not a negative measure of her decline.

2) At mum’s funeral service the “Dash poem” was read out. If you have not heard it before like me, then please search under google. The little dash between the dates of birth and death is the most important thing. Mum almost got to 90yo, recent years were increasingly shaped by her developing Dementia, but that was not all of her dash. Mum did a great deal, helped others, older pre Dementia memories are coming back to me. I will never forget the problems of her illness in recent years, but very gradually they are becoming only a small part of when I think about mum. I have started an exercise book in which I note down things I remember about mum from over the years. Slowly I am getting a better sense of balance. Full time caring for mum was getting progressively harder, it had come to define my life and very significantly my relationship with mum. Now I can increasingly remember her as a son, not her carer. I hope that makes some sense.

3) Now for a confession which might help others. I tried to talk to someone at CRUSE bereavement services, but they were to busy and suggested I contact the Samaritans. Initially my reaction was no to doing so. I did not feel suicidal and I thought that was the purpose of that organisation. I sent an email to them outlining my recent loss, upset, continued isolation, etc. The reply stressed that it was perfectly okay to ring them to discuss matters so I did. Spoke to a lovely lady for about an hour, covered a lot of matters, got a few suggestions. Not sure I would have done this without the ongoing isolation of lockdown, but it did a lot of good. As mum would say “you live and learn”. The Samaritans do more than what my understanding of their service was.

4) Talking to my sister on the phone shortly after mum’s death she advised mum would want us to go forward positively with our lives, not have an extended period of grief. Remember her, cherish the memories, but let go of the grief. I was to upset to start with. I heard the words but did not take them in, until a walk in the sunshine down me and mum’s alley the afternoon after her funeral. For the first time in weeks I smiled, saw things a little more positively, a fuzzy non caring future briefly emerged, whereas before I could not think of the future.

Okay a long post. Helped me doing so. I have managed it without great emotional upset. I am now going for a walk again in the sunshine, starting off up the alley. I hope my words can help just one other person. I owe this site and it’s membership a great deal. I need to get mum’s affairs settled, decide on a future location, try and get back into employment, grow myself again. Part of that future will include the world of Dementia. Mum would quote her dad who said “nothing is wasted”. Before mum got ill I knew nothing about Dementia, the isolation of Carers, the failings of Adult Social Care, etc. I stumbled into it with mum, but perhaps that was fate playing a role not only for mum, but for me as well. I intend to get settled then do voluntary work in the Dementia area. I needed help, advice, guidance and got it from the voluntary sector and this forum. On Monday no doubt several people up and down the country will get a Dementia diagnosis. Their partners and family will also get it, but not perhaps realise its full significance to them, at that point in time. They to will need help. Sometime in the future I will help where I can as a volunteer.
Thank you for taking the time to write this.
Our situation seems very similar to yours - I gave up work to care for my Mum - and at the moment I cannot see a future, for either of us. Dementia just seems to swamp every aspect of our lives. I can no longer remember the person Mum once was,and fear I never will.
I'm heartened that, when this ends, I may eventually revive happier, pre-dementia memories.
 

Whisperer

Registered User
Mar 27, 2017
257
0
Southern England
Thank you Whisperer. I've read on here before that when you lose your PWD the memories of how they used to be slowly come back. I hope that is true as I can hardly remember what our life was like only a few short years ago.
I'm sorry for your loss and pleased you feel you want to help others in future, I'm sure those in waiting will appreciate your kindness.
Dear @RosettaT I can appreciate your current circumstances. In the caring role you are so busy dealing with matters day to day, trying to anticipate what might arise next, you just get into a world of grey. The last few months mum got false signals she needed to use the toilet and trotted off maybe ten times a night. Not great but it reduced me to exhaustion when mum could no longer get herself off the toilet, so I had to “sleep” with her and join her on each trip. Her memory was so poor trying to convince her she had only unsuccessfully gone 30 minutes ago was doomed to fail.

Can I make a suggestion. Are there any ornaments in the house you bought together in the past. Try to remember doing so and when you next look at it, remember when and where it was bought. Mum bought an ornament of two rabbits playing a piano from a charity shop, just before Xmas in 2010 on a day trip to Wimborne. We did not get out on such trips for several years, but remembering that day I remembered the Xmas lunch we had and a little girl mum talked to in the restaurant at the next table. She offered her doll for mum to cuddle. Mum asked for the doll’s name and pretended to have a chat with her. An ornament brought back that memory. Alternatively perhaps a place you no longer visit might bring back a pleasant past memory.

I am not in any way underestimating the problems you are experiencing. You kindly replied to my thread and my words are aimed at offering you support. Very best wishes for the future.
 

Whisperer

Registered User
Mar 27, 2017
257
0
Southern England
Thank you for taking the time to write this.
Our situation seems very similar to yours - I gave up work to care for my Mum - and at the moment I cannot see a future, for either of us. Dementia just seems to swamp every aspect of our lives. I can no longer remember the person Mum once was,and fear I never will.
I'm heartened that, when this ends, I may eventually revive happier, pre-dementia memories.
Dear @lollyc I can only offer my internet support to you. Your words about lives being swamped in every respect by Dementia, will be understood by any carer who has helped a loved one with that illness. The illness just keeps taking, never giving back. I think as part of the caring role you have to focus increasingly on growing physical, emotional and mental demands. The individual can only cope by ever narrower focus and the past can become a distant and forgotten past. My mum memory wise eventually lived in the years prior to 1950, before I was born, but placed me in them at times. I did not realise how much the caring role had come to shape and define me, until mum died and I was left with an empty day. One morning just after she died the alarm went (I had set it by habit) and went down to prepare her pills. Only half way through did I realise I was on autopilot and promptly burst into tears.

All the above said please at least hold onto who you are. One day the caring role will end, not said to cause upset but a reality. I and others can confirm you will recapture older and happier memories, once the pressures of the caring role end. Please try and stay strong in the present time.
 

nick97

Registered User
Feb 16, 2020
58
0
I love this post @Whisperer. My mum's funeral is in two weeks, over 4 weeks after her death, and the wait is horrendous.

I know mum's funeral service will be odd, what with no singing and limits on amount of people who can turn up.

Is there anything one can do to try to make it less odd? Or just embrace the oddness 🙃
 

Whisperer

Registered User
Mar 27, 2017
257
0
Southern England
I love this post @Whisperer. My mum's funeral is in two weeks, over 4 weeks after her death, and the wait is horrendous.

I know mum's funeral service will be odd, what with no singing and limits on amount of people who can turn up.

Is there anything one can do to try to make it less odd? Or just embrace the oddness 🙃
Hello @nick97

I guess you have no choice but to embrace the oddness but soften the edges. I had a chance to write mum‘s eulogy. Everyone at the funeral knew about mum’s Dementia, that illness was not mum, so I just ignored that part of her life. I went back to better times, developed themes which were constants in her life eg a passion for knitting and sewing, the sea, etc. It told adult grandchildren a little more about their granny. Make yourself a promise to do something fun to celebrate your mum’s life when lockdown is over eg a family get together in the garden, etc. The COVID-19 funeral in everyone’s mind becomes a holding operation, not the last say on the matter. Hope that helps.
 

nick97

Registered User
Feb 16, 2020
58
0
Thanks @Whisperer. I've written a eulogy, and I had written a little bit about mum's illness at the end, but I guess I'll take that out. The focus was on her love of gardening and crosswords anyway, so maybe I'll just keep it that. Thanks.
 

Pepp3r

Registered User
May 22, 2020
74
0
Hi @Whisperer and @nick97 , we embraced the oddness of a covid funeral during the first lockdown. Although there was no singing the piece of music we chose already had a choir singing it. Looking back ... mum got a pitch perfect rendition of her favourite hymn.
 

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