Self rescue after a crisis of loss

[Grahamstown]

Today is exactly a week since my daughter had found her Dad had died peacefully between 3 and 6 beside her, when she awoke. We were mourning together the loss of our beautiful boy even though he had changed beyond all recognition in all the ways that Alzheimer’s changes a person, memory, functioning, behaviour but most of all physically because of the savage ‘not wanting to eat’ symptoms. He never did have serious psychiatric behaviour problems just the usual things. I have got cracking with all the necessary paperwork and yesterday put the finishing touches to the funeral which I planned and my daughter and son collaborated with. I would taken him to respite care yesterday and set off on my own respite break but I feel a great sense of relief that I didn’t have to do that. As a result I didn’t have to cancel my trip and I am going for a week of rest, sunshine and reflection before the funeral after I get back. How do I feel one week on? Still overwhelmed by emotions at times, numb, fractured images of my husband both as he used to be and how he became, a sense of unreality as if the past few years were a dream or nightmare, a sense of having been deposited back where I began 57 years ago, single, employed and independent. I do have a strong image of him from that time from a series of photographs I took so that I could have one by my bedside. They are somewhere in the stuff that hadn’t been unpacked since we moved two years ago but I am dreading the pre-digital photos. I find comfort in TP and still like to visit but I am very upset by the posts by people who are going through this terrible disease either themselves or with a family member. Small steps as my friend, whose father has dementia, says.

 

[Grannie G]

Your emotions will fluctuate for now @Grahamstown Small steps indeed.

 

[Izzy]

Can’t agree more - small steps. I know it’s a cliche but I do find the description ‘rollercoaster’ is accurate. I’m glad you find comfort in TP.

 

[DesperateofDevon]

I cried this morning reading a post, but the grief I felt for another is compassion a quality my family & friends love me for. It’s a defining characteristic that my husband once said to me after I was distraught about care issues & others lack of response & humanity to these issues
“Please don’t ever change, I wouldn’t want you to be like those women!”

Dip in & out my lovely as & when, we are here now to support you as you supported us on our dementia journeys.
(((((((((Hugs))))))))
I shall be lighting my candles & thinking of your loved one , family & you!
xxx

 

[Grahamstown]

Two weeks since he died and I found myself reading The Selfish Pig’s Guide to Caring and he pointed us in the direction of Virginia Ironside’s book ’You’ll Get Over It’, which I decided to get on my device. So far I can recommend it because she talks a lot of sense, or as much sense as you can get from reading. At the moment I cannot believe that I shall never ‘see’ him again. I say ‘see’ because what I would see is not something I would want to see, as he was over the past weeks and months. I have recommended it to my son and daughter who are distraught. It might help them in time. So I am mentioning it again here in case someone else needs something.

 

[CWR]

Two weeks since he died and I found myself reading The Selfish Pig’s Guide to Caring and he pointed us in the direction of Virginia Ironside’s book ’You’ll Get Over It’, which I decided to get on my device. So far I can recommend it because she talks a lot of sense, or as much sense as you can get from reading. At the moment I cannot believe that I shall never ‘see’ him again. I say ‘see’ because what I would see is not something I would want to see, as he was over the past weeks and months. I have recommended it to my son and daughter who are distraught. It might help them in time. So I am mentioning it again here in case someone else needs something.

I am reading Megan Devine's It ok that you are Ok:Meeting grief and loss in a culture that doesn't understand. It has helped me. All the talk of closure that you are supposed to get after the funeral, I dont really recognise that. In some ways, after 3 months, I still can't believe that I will never see mum again. It's the " never " that really gets me. Yes, I looked at my diary for this time last year,, and yes, there were difficult times vis-a vis toiletting and endless questions, but she still knew me and loved me , and told me so. The main point that Devine makes is that the pain doesnt go away; in time you hopefully find ways of living with it.

 

[Grahamstown]

I am reading Megan Devine's It ok that you are Ok:Meeting grief and loss in a culture that doesn't understand. It has helped me. All the talk of closure that you are supposed to get after the funeral, I dont really recognise that. In some ways, after 3 months, I still can't believe that I will never see mum again. It's the " never " that really gets me. Yes, I looked at my diary for this time last year,, and yes, there were difficult times vis-a vis toiletting and endless questions, but she still knew me and loved me , and told me so. The main point that Devine makes is that the pain doesnt go away; in time you hopefully find ways of living with it.

I can relate to what you say more or less completely. I too look back which can raise the guilt monster. He was always so gentle and sweet even though he was self centred as people with the disease have to be. I was frequently exasperated cross or bossy depending on what had to be done. He never stopped loving me and said so a lot so I won’t hear that again. He used to say how well I looked after him so he did know in the midst of his confusion. Horrible horrible disease to take a person before they die and still we have to mourn. No I won’t ‘get over’ it or ‘move on’ or whatever it is because I don’t want to. You are quite right, the funeral is another necessary and very important event and I hope it is both mourning and remembering the man. At least I shall know that he is dead and I shall never see him again which at the moment I can’t quite believe. But it won’t change anything.

 

[Duggies-girl]

@Grahamstown I was apparently bossy. I remember dad saying that I would probably make him get up and dressed and walk to his own funeral. I miss the wit and I wonder now how he managed to keep it up but he did right to the end almost. He had an answer for everything and never failed to make me laugh but I do remember times when I was cross and exasperated too and that is not surprising really considering the stress of the past few years.

I remember sleeping with dad just like your daughter did but it was a year ago when dad came out of hospital and did not know where he was anymore. I moved in with dad then and I admit that I was absolutely worn down by dad constantly calling out 'is there anybody there' and other questions so I just got in his bed with him so that I could answer straight away as it was easier. He recovered remarkably well from that episode although never back to his previous self except for the wit, he managed to keep that somehow.

Dad got a letter yesterday from Australia to tell him that his oldest friend and shipmate had died. It's strange to think that I sent the very same letter to them a couple of weeks ago and our letters must have passed each other somewhere along the way. Dad's friend died 4 days after dad. I like to think they are having a good laugh together and causing some mischief somewhere like they used to.

Dad has been gone for over 3 weeks now and it will be a week tomorrow that we will say goodbye for the last time. I have chosen the music and the photo's for his service and it seems that I am executor too so that has kept me busy but what then. Self rescue sounds good but where to start. I suppose some kind of holiday or perhaps I should clean my own house because that has certainly suffered over the past few years and as for the garden, well that can wait.

Yes it is hard to believe that I won't see him again but I am glad that he was my dad. I am glad that you have good family @Grahamstown because that helps a lot.

 

[Grannie G]

I am glad that he was my dad

Such a lovely legacy.

 

[DesperateofDevon]

Two weeks since he died and I found myself reading The Selfish Pig’s Guide to Caring and he pointed us in the direction of Virginia Ironside’s book ’You’ll Get Over It’, which I decided to get on my device. So far I can recommend it because she talks a lot of sense, or as much sense as you can get from reading. At the moment I cannot believe that I shall never ‘see’ him again. I say ‘see’ because what I would see is not something I would want to see, as he was over the past weeks and months. I have recommended it to my son and daughter who are distraught. It might help them in time. So I am mentioning it again here in case someone else needs something.

thank you i will look out this as it's almost 3 months since Dad passed & im struggling with it all.
((((hugs))))

 

[Grahamstown]

thank you i will look out this as it's almost 3 months since Dad passed & im struggling with it all.
((((hugs))))

I am so sorry to learn that you are struggling which is horrible. There are things in the book that might be helpful but it’s a tough call getting over this profound loss. I think I am coming to terms with it and then I am not. I think the baby steps advice is helpful. Do try it.

 

[Grahamstown]

@Grahamstown I was apparently bossy. I remember dad saying that I would probably make him get up and dressed and walk to his own funeral. I miss the wit and I wonder now how he managed to keep it up but he did right to the end almost. He had an answer for everything and never failed to make me laugh but I do remember times when I was cross and exasperated too and that is not surprising really considering the stress of the past few years.

I remember sleeping with dad just like your daughter did but it was a year ago when dad came out of hospital and did not know where he was anymore. I moved in with dad then and I admit that I was absolutely worn down by dad constantly calling out 'is there anybody there' and other questions so I just got in his bed with him so that I could answer straight away as it was easier. He recovered remarkably well from that episode although never back to his previous self except for the wit, he managed to keep that somehow.

Dad got a letter yesterday from Australia to tell him that his oldest friend and shipmate had died. It's strange to think that I sent the very same letter to them a couple of weeks ago and our letters must have passed each other somewhere along the way. Dad's friend died 4 days after dad. I like to think they are having a good laugh together and causing some mischief somewhere like they used to.

Dad has been gone for over 3 weeks now and it will be a week tomorrow that we will say goodbye for the last time. I have chosen the music and the photo's for his service and it seems that I am executor too so that has kept me busy but what then. Self rescue sounds good but where to start. I suppose some kind of holiday or perhaps I should clean my own house because that has certainly suffered over the past few years and as for the garden, well that can wait.

Yes it is hard to believe that I won't see him again but I am glad that he was my dad. I am glad that you have good family @Grahamstown because that helps a lot.

I have now said goodbye. It was a very uplifting funeral which I planned with the music readings and the addresses because I had three, my son, a close friend and then a friend who could relate about his work. They all spoke well and it was a beautiful service. Now I do feel bereft as I now face a lot of bureaucracy. I am thinking of you and I definitely will be as your dad’s funeral approaches. I hope you do not dread it, I didn’t and tried to have a transition from sober mourning to celebration of his life. His friend described it as a life well lived.

 

[CWR]

I am so sorry to learn that you are struggling which is horrible. There are things in the book that might be helpful but it’s a tough call getting over this profound loss. I think I am coming to terms with it and then I am not. I think the baby steps advice is helpful. Do try it.

I agree with you; one day I think I'm ok, then the next night I'm sobbing like a child.Logically, I know that had she lived, she would only have got worse, and it would have been awful for both of us, but this isn't about logic, is it? By and large, tho', it's not been so much the case of me being distraught all or even most of the time. I just feel lost, unsure where my life goes now, what do I do now with this freedom from the burdens of caring? Even to type that seems wrong. It was a burden, but mum was still lovable, even with her dementia. Only yesterday, listening to a cd of carols ( don't ask! I'm just weird!), when they sang Away in a manger, I thought of mum as she used to sing that. I often felt that she had the soul of a child, I miss that simplicity in the complex, unsettling world that we live in.

 

[Duggies-girl]

I am so glad that it was uplifting @Grahamstown I am planning dad's funeral and it will be some kind of celebration. I have chosen the music which I know that dad would be pleased to listen to. My son is going to play a melody of tunes for dad on his guitar which dad would have loved and it will all be very personal to dad.

A well lived life, yes that is what dad had, he was a sailor and travelled all over the world, he was a husband and father and did well for us all, he was kind of special really and will be missed. I suppose that is more than many of us could hope for, to have been loved and remembered and to have made some kind of impression on our loved ones. Well dad did it all.

Not looking forward to the bureaucracy though.

 

[Whisperer]

Hello
i am still caring for my mum and cannot know how you are feeling as I got to 60 years old and not yet faced the death of a loved one. That said perhaps I can add one comment which may help you in the days to come. Like everyone on this forum caring has enclosed your world. Everything was seen through the need to protect your loved one, ensure their needs were met as best as Dementia would allow. Now suddenly there is time to reflect, as you say a new chapter is starting in your life.

To start with it will most likely be filled with mixed emotions. Remembering older memories before Dementia came into your lives, the period of caring, now the new chapter only just starting. Emotions are wonderful things but at times like this they can be a bit of a roller coaster. May I suggest the solution is in your own words. Dogs are a great source of company. They like other animals take us out of ourselves. In these early days perhaps you could use the world around you to do the same. Spring is coming. Look for the leaves on the trees, a sign of a new beginning. Winter clouds will lessen so look for the sunsets, many beautiful, all different in their colour. See the new born birds hopping around the garden or park, curious about just about everything. As time passes could you consider a dog for company? A new friendship, a source of love and companionship, a developing relationship to treasure.

Take the time to heal inside. Some days will be worse than others. I once heard the pain of loss is the price we must pay for having loved someone. A person spared that pain is someone who has never known the true joy of love in all of its many different faces. I wish you well in the new chapter of your life. Take the time to reflect. Each person is unique, meaning their reaction to events in life is also unique. Heal at your own pace in your own way. Any way I just wanted to say something which might help you. This forum after three years still takes getting some use to. I have never met any of the people who post on it, yet in an odd way it feels like a family. There are always good bits of advice to read and tuck away, but more importantly people reach out to try and support others in trying moments. Hope I have done some good, at least no harm in my comments.

 

[Grahamstown]

Hello
i am still caring for my mum and cannot know how you are feeling as I got to 60 years old and not yet faced the death of a loved one. That said perhaps I can add one comment which may help you in the days to come. Like everyone on this forum caring has enclosed your world. Everything was seen through the need to protect your loved one, ensure their needs were met as best as Dementia would allow. Now suddenly there is time to reflect, as you say a new chapter is starting in your life.

To start with it will most likely be filled with mixed emotions. Remembering older memories before Dementia came into your lives, the period of caring, now the new chapter only just starting. Emotions are wonderful things but at times like this they can be a bit of a roller coaster. May I suggest the solution is in your own words. Dogs are a great source of company. They like other animals take us out of ourselves. In these early days perhaps you could use the world around you to do the same. Spring is coming. Look for the leaves on the trees, a sign of a new beginning. Winter clouds will lessen so look for the sunsets, many beautiful, all different in their colour. See the new born birds hopping around the garden or park, curious about just about everything. As time passes could you consider a dog for company? A new friendship, a source of love and companionship, a developing relationship to treasure.

Take the time to heal inside. Some days will be worse than others. I once heard the pain of loss is the price we must pay for having loved someone. A person spared that pain is someone who has never known the true joy of love in all of its many different faces. I wish you well in the new chapter of your life. Take the time to reflect. Each person is unique, meaning their reaction to events in life is also unique. Heal at your own pace in your own way. Any way I just wanted to say something which might help you. This forum after three years still takes getting some use to. I have never met any of the people who post on it, yet in an odd way it feels like a family. There are always good bits of advice to read and tuck away, but more importantly people reach out to try and support others in trying moments. Hope I have done some good, at least no harm in my comments.

All you say is wise and true, especially your observations on the nature of this website. I still have comfort from The Selfish Pig’s Guide to Caring. Baby steps, I keep trying to say to myself. Today is far worse than the day of the funeral yesterday, set off by the most amazing email from one of his colleagues. I find myself facilitating other people’s grief at his death, which I reflect may be a positive thing to do. Thank you.

 

[DesperateofDevon]

@Duggies-girl @Grahamstown as for the paperwork it's not as daunting as trying to sort out care for our PWD! bits seem daunting but in reality a simpler system with defined processes & some helpful people who are sympathetic to it all.
just can feel too much on top of everything
xxx

 

[Grahamstown]

Today is three weeks since his death and also the date of our 55th wedding anniversary. I feel like I am back in time to before I met him, a single person, and it’s not easy but baby steps are the best way forward. I am thinking of you @Duggies-girl as we tread the road. of bereavement. My brother has departed en route back to Australia with a few days in London. I am going to London myself on Saturday to meet my friends of 62 years standing who all came to the funeral. Wonderful friends.

 

[Grahamstown]

Hello
i am still caring for my mum and cannot know how you are feeling as I got to 60 years old and not yet faced the death of a loved one. That said perhaps I can add one comment which may help you in the days to come. Like everyone on this forum caring has enclosed your world. Everything was seen through the need to protect your loved one, ensure their needs were met as best as Dementia would allow. Now suddenly there is time to reflect, as you say a new chapter is starting in your life.

To start with it will most likely be filled with mixed emotions. Remembering older memories before Dementia came into your lives, the period of caring, now the new chapter only just starting. Emotions are wonderful things but at times like this they can be a bit of a roller coaster. May I suggest the solution is in your own words. Dogs are a great source of company. They like other animals take us out of ourselves. In these early days perhaps you could use the world around you to do the same. Spring is coming. Look for the leaves on the trees, a sign of a new beginning. Winter clouds will lessen so look for the sunsets, many beautiful, all different in their colour. See the new born birds hopping around the garden or park, curious about just about everything. As time passes could you consider a dog for company? A new friendship, a source of love and companionship, a developing relationship to treasure.

Take the time to heal inside. Some days will be worse than others. I once heard the pain of loss is the price we must pay for having loved someone. A person spared that pain is someone who has never known the true joy of love in all of its many different faces. I wish you well in the new chapter of your life. Take the time to reflect. Each person is unique, meaning their reaction to events in life is also unique. Heal at your own pace in your own way. Any way I just wanted to say something which might help you. This forum after three years still takes getting some use to. I have never met any of the people who post on it, yet in an odd way it feels like a family. There are always good bits of advice to read and tuck away, but more importantly people reach out to try and support others in trying moments. Hope I have done some good, at least no harm in my comments.

Your words are so good and helpful. I try to find three things to be grateful for each day which is sometimes a challenge. Reading your words again is one of them today. Thank you!

 

[Duggies-girl]

Today is three weeks since his death and also the date of our 55th wedding anniversary. I feel like I am back in time to before I met him, a single person, and it’s not easy but baby steps are the best way forward. I am thinking of you @Duggies-girl as we tread the road. of bereavement. My brother has departed en route back to Australia with a few days in London. I am going to London myself on Saturday to meet my friends of 62 years standing who all came to the funeral. Wonderful friends.

Thank you for thinking of me @Grahamstown it was 4 weeks yesterday that dad died and his funeral is on Monday. We could not get an appointment until 5 days after to register his death and then the system was down and we had to wait another 5 days for death certificates and then the coroner raised a query over dad not having been seen for more than so many days so everything got delayed so it is Monday. Those 4 weeks have gone so quickly, it seems like yesterday but I know it wasn't.

I have cousins and friends and my 91 year old aunt coming to the funeral and dad's few remaining friends (most are dead) so it should be a good turnout. I hope it is and I hope the weather is nice. I am glad that your brother from Australia came over to support you @Grahamstown We had news that dad's oldest friend who lived in Australia died 4 days after dad which was sad as we have good memories of him. Some very good memories in fact.

I went to see dad yesterday because I know he would have liked that, he looked okay, just a bit smaller but that is what I would expect of someone who was so ill. I popped a couple of family photo's in his pocket and a short note. It made me feel a bit better so it was worth going.

I am executor and my brother is happy for me to do it all (as usual) so I don't have hurry which is good. I need to get away for a while and for once nothing is stopping me except the corona virus (typical I suppose) but I will worry about that next week. I could really do with some time on my own for some self-rescue.