My time now

[Duggies-girl]

I have been reading a lot of posts on here from posters whose loved ones are going through the end stages of their dementia and some are rather harrowing and I have an awful dread of when it becomes my dads turn because it is getting closer now, I know that but I keep thinking of something that someone said to me some time ago and it makes me feel a bit better somehow so I am going to share it.

I belong to a hiking group (U3A) although I don't think I have been for about a year now because I am looking after dad and it has become impossible but I used to thoroughly enjoy our hikes through the countryside twice a month on a Friday morning whatever the weather. We were a very varied bunch, most of us were retired and in fact I was one of the youngest when I joined at age 55 and was still working part time. We would often do ten miles before lunch time. I am 61 now and things have changed and I have not been for nearly a year.

Anyway we would always do a different route and everyone chatted to everyone as we moved up and down the line but I often used to end up talking to a woman a few years older than myself as we were both caring for our elderly dads and we would share our stories and experiences of our dads and how we were caring for them. Her dad was over 90 and she lived with him and had been caring for him for a number of years but he didn't have dementia. She always used to try to make the hike because she enjoyed it the same as I did. Then there came a time when she did not turn up for quiet a long time and I wondered why and if it was because of her dad.

Then one Friday about a year and a half ago she suddenly turned up again and I was so pleased to see her.and of course I asked her how her dad was and she told me that he had died. I was genuinely concerned because I know how long she had been looking after him and I just said 'I am so sorry to hear that' and she smiled at me and 'No don't be sorry, I have done my bit and now it is my time' then she promptly went on to tell me that she had already booked her trip to India that she had waited so long to go on.

She gave me a kind of inspiration in that she had just got on with the job that had to be done because it was her dad but now he was gone that job was finished and now it was her time. She had obviously done her best and was left with no guilt and was just going to get on with the things she had always planned to do and I am hoping that I can be just like that when my dad dies as I feel I am doing quiet a good job even if I sometimes moan about it.

I think that sometimes we beat ourselves up about things that we have no control of even when we have done our utmost. I admired her attitude at the time and it keeps coming back to me and I think that she sort of got it right. Last time I saw her she was off to Peru and so looking forward to it. Personally I think she has earned her 'my time' and I wish her all the best. I want to be like that.

 

[Bunpoots]

@Duggies-girl
I hope that I too will be ready to enjoy "my time" when dad reaches the end of his journey. I feel slightly ashamed to admit that, but I'm not wishing him dead I'm just wishing for an end to the suffering.

I Understand the desperation of people who want to hang on to the last vestiges of existence but that isn't how I feel. I will be devastated if I get a call to say that dad has passed away in his sleep, but in my logical mind I know that this is the best outcome - for dad and for all of us.

Only then can we start to heal.

Thank you for sharing.

 

[father ted]

Duggies girl, that is a lovely story and you are absolutely right that your friend had entirely the best attitude.

When you said she suddenly stopped coming I feared that maybe something had happened to her or that she had died, another fear for all those caring- what happens if I can't do it anymore? This happened to a friend of mind who cared for his elderly mother and another family member. Plans were put on hold whilst everyone else's needs were put first and then he got ill with undiagnosed cancer and died mercifully very quickly.

I am glad your story has a happier outcome and shows that when one has done what one can there really should be no cause to feel guilt or regret. Thank you for sharing.

 

[Fullticket]

I can only speak for what I went through when mum died. Yes, in caring for her I had to forgo a lot of the things I loved doing (exercising properly for one, I had put on a stone) and sometimes - like all of us - I felt like I could not go on like that for much longer. Mum did not die from the dementia but from a physical problem that, had she not been so frail, an operation would have solved. However, the doctors were not happy to operate and we chose not to let her have to go through the op and, if she had survived, the life changing recovery process she would have needed and would likely not have understood. While in hospital she had a stroke and so she really did not know much about the last week of her life. Hugely distressing and not how it was anticipated but, nearly five months on and I am coming out the other side. I am not grieving for the relationship with my mother - she was a very difficult lady but I was surprised at how her death made me feel - sort of useless, directionless and insecure. What was I here for? and then guilty because it was 'all about me!'
I am so glad your friend has such a positive attitude now and is getting on with her life. In the last three weeks I have realised that I am now getting on with mine. Doing our best is all we can do and, considering the woeful amount of help out there to support us, I think we all deserve to enjoy ourselves once circumstances and the normal grieving process allows.

 

[kindred]

I can only speak for what I went through when mum died. Yes, in caring for her I had to forgo a lot of the things I loved doing (exercising properly for one, I had put on a stone) and sometimes - like all of us - I felt like I could not go on like that for much longer. Mum did not die from the dementia but from a physical problem that, had she not been so frail, an operation would have solved. However, the doctors were not happy to operate and we chose not to let her have to go through the op and, if she had survived, the life changing recovery process she would have needed and would likely not have understood. While in hospital she had a stroke and so she really did not know much about the last week of her life. Hugely distressing and not how it was anticipated but, nearly five months on and I am coming out the other side. I am not grieving for the relationship with my mother - she was a very difficult lady but I was surprised at how her death made me feel - sort of useless, directionless and insecure. What was I here for? and then guilty because it was 'all about me!'
I am so glad your friend has such a positive attitude now and is getting on with her life. In the last three weeks I have realised that I am now getting on with mine. Doing our best is all we can do and, considering the woeful amount of help out there to support us, I think we all deserve to enjoy ourselves once circumstances and the normal grieving process allows.

Oh these are wonderful, profound posts. My OH is now in a nursing home(four months) and I am struggling with what I call prisoner syndrome whereby if I go more than a mile or so from home, I feel ill and have to rush back ... but of course OH is not there any more ... and worse, if I try to do something creative or of my own I feel sick. I become absolutely overwhelmed if I try to do anything you might class as for me. Has anyone else felt like this? love and best, Geraldine aka kindred. I am so glad I can ask you this. xx

 

[Amethyst59]

Oh these are wonderful, profound posts. My OH is now in a nursing home(four months) and I am struggling with what I call prisoner syndrome whereby if I go more than a mile or so from home, I feel ill and have to rush back ... but of course OH is not there any more ... and worse, if I try to do something creative or of my own I feel sick. I become absolutely overwhelmed if I try to do anything you might class as for me. Has anyone else felt like this? love and best, Geraldine aka kindred. I am so glad I can ask you this. xx

I’m pretty well in the same position as you, and it is sort of helping me (if anything can help at the moment) to remember how I felt when my late husband died. I felt I was trapped in a dark tunnel, by myself....I can still ‘see’ it, and I kept thinking, if I see Norman I will feel better. And I would drive to his grave...and as soon as I got out of the car, before I had even walked to his grave, I thought, what am I doing her? He is not here. And I would drive home, and then it would happen, again and again. I stood by his grave sometimes and just wanted to be in there with him.
I am only telling you this in such detail, because I want to give you a taste of the despair I felt because I CAME THROUGH IT. I need to remind myself of this too.

 

[Marnie63]

That story is inspiring @Duggies-girl and I can relate to it. This hard slog with dementia, in all it's various forms that we go through as carers, is I think hard enough, that once it's over, we are more than entitled to have 'our time' back again. Sadly though, there must be many carers who are so badly affected by the caring experience, dementia or not, that they may not have the health, finances or strength left to resume their 'my time'. It's so sad, and perhaps if there was more support, it wouldn't happen so much, but that's another topic ...

The thought of what I will be able to do once mum has gone (VaD, nearly 3 years, now almost bed bound, I'm looking after her at home with some agency support) keeps me going. It's a terrible fact that I will only be able to enjoy my life again once hers is over, but that's how it is. It is a fact and there's nothing wrong with facing up to it. Once she has gone I will be able to travel again and enjoy my life, knowing that I did my absolute best to look after her, hard as it was (and it's still not over, so it could get harder yet!).

I can also relate to the walking experiences. There is something so refreshing about being outdoors, doing exercise that's very good for you, and chatting to a wide variety of people about anything and everything. I am a very keen walker and have had many, many deep conversations about all sorts of topics, including mum, while out walking with a group. I can highly recommend this activity to anyone. It's very therapeutic whether you have issues in life or not. I still try to get out for my walks, but it's very sporadic. I don't like hiking in the heat, but the programme for the Autumn walks is just out, and I have highlighted a load to see if I can get carer cover to go. I have also booked to join them for their Christmas walk and lunch!

I have a small circle of very close friends who I talk to and message regularly and who have helped me a lot. Most talk along the same lines as your walking friend - that this is not forever, one day it will be over, I will grieve, and then I will be able to get on with the rest of my life. I am already looking at air fares, but unfortunately can't book anything just yet!

Keep on hiking if you can Duggies'girl, it is such an excellent activity for both physical and mental health.

PS - I have already decided that one day I will do the three peaks in a year in honour of my lovely mum, I'm hoping that the hard slog will help me to purge all the awful things I have experienced with her because of the vile dementia. I've done Snowdon several times, but have never done Ben Nevis nor Scafell Pike. I WILL do it one day!

 

[kindred]

I’m pretty well in the same position as you, and it is sort of helping me (if anything can help at the moment) to remember how I felt when my late husband died. I felt I was trapped in a dark tunnel, by myself....I can still ‘see’ it, and I kept thinking, if I see Norman I will feel better. And I would drive to his grave...and as soon as I got out of the car, before I had even walked to his grave, I thought, what am I doing her? He is not here. And I would drive home, and then it would happen, again and again. I stood by his grave sometimes and just wanted to be in there with him.
I am only telling you this in such detail, because I want to give you a taste of the despair I felt because I CAME THROUGH IT. I need to remind myself of this too.

Oh darling, thank you with all my heart, thank you. Gxx

 

[Duggies-girl]

Yes @Marnie63 The three peaks, Wow that would be something, I am sure you will do it one day and I am sure that I will get back to my hiking sometime soon but to be honest I do prefer cool weather walking, in fact I love the crisp winter walks the best because I soon warm up. I love the lake district, and have done Hellvelyn and some others but I would like to do Striding Edge one day because it looks a bit scary and I feel like it would be an achievement for me. I would love to do the coast to coast walk too. We will do these things because we are made of the right stuff I am sure of that.

@Fullticket I can identify with the getting fat. Dad is ill and I always have to have a bit of what he has or he doesn't eat and he has to eat. That combined with the lack of excercise and for the first time in my life I am overweight by about two stone. I will shift it one day. Your judgement over your mums illness sounded right to me. Dad is not being treated either on the oncologists advice and I was actually glad when she told us this because I don't think treatment would help dad, it would probably make him worse.

I am trying to keep out of the dark places that us carers often find ourselves in because we deserve better. I have been feeling very down lately because of no other reason than that I am trapped. We must hold ourselves in higher esteem because we count and we do important jobs quiet unselfishly and if we allow it we can become overwhelmed with it all. @Amethyst59 your story was particularly harrowing, the despair you felt at the time must have been overwhelming to make you do what you were doing. I know it never truly leaves us but you have come through it and that is so good. You deserve to feel better and I think we all deserve some peace of mind instead of the continual gut churning and disappointment we feel each time our loved one's take a step down in this awful illness.

Thank you all for sharing your thoughts with me and as awful as I feel for saying it, I look forward to my time because I have earned it. I will not feel guilt or at least I will try not to and that may have to do.

 

[love.dad.but..]

I have been reading a lot of posts on here from posters whose loved ones are going through the end stages of their dementia and some are rather harrowing and I have an awful dread of when it becomes my dads turn because it is getting closer now, I know that but I keep thinking of something that someone said to me some time ago and it makes me feel a bit better somehow so I am going to share it.

I belong to a hiking group (U3A) although I don't think I have been for about a year now because I am looking after dad and it has become impossible but I used to thoroughly enjoy our hikes through the countryside twice a month on a Friday morning whatever the weather. We were a very varied bunch, most of us were retired and in fact I was one of the youngest when I joined at age 55 and was still working part time. We would often do ten miles before lunch time. I am 61 now and things have changed and I have not been for nearly a year.

Anyway we would always do a different route and everyone chatted to everyone as we moved up and down the line but I often used to end up talking to a woman a few years older than myself as we were both caring for our elderly dads and we would share our stories and experiences of our dads and how we were caring for them. Her dad was over 90 and she lived with him and had been caring for him for a number of years but he didn't have dementia. She always used to try to make the hike because she enjoyed it the same as I did. Then there came a time when she did not turn up for quiet a long time and I wondered why and if it was because of her dad.

Then one Friday about a year and a half ago she suddenly turned up again and I was so pleased to see her.and of course I asked her how her dad was and she told me that he had died. I was genuinely concerned because I know how long she had been looking after him and I just said 'I am so sorry to hear that' and she smiled at me and 'No don't be sorry, I have done my bit and now it is my time' then she promptly went on to tell me that she had already booked her trip to India that she had waited so long to go on.

She gave me a kind of inspiration in that she had just got on with the job that had to be done because it was her dad but now he was gone that job was finished and now it was her time. She had obviously done her best and was left with no guilt and was just going to get on with the things she had always planned to do and I am hoping that I can be just like that when my dad dies as I feel I am doing quiet a good job even if I sometimes moan about it.

I think that sometimes we beat ourselves up about things that we have no control of even when we have done our utmost. I admired her attitude at the time and it keeps coming back to me and I think that she sort of got it right. Last time I saw her she was off to Peru and so looking forward to it. Personally I think she has earned her 'my time' and I wish her all the best. I want to be like that.

When my dad died last year I felt sad but at peace because I know I did everything I could during his dementia years to care and fight battles for him. My feeling as well the day he died was I could not have possibly done any more I had done my very best at every turn taken some very difficult decisions with no regrets that whilst hard for me were the kindest for dad and in his best interests at the time...all decisions and actions I made and took were with the thoughts of when this is all over I can look at myself in the mirror knowing I did my very best for dad.....and finally on that day and with arrangements made as he would have wanted my task was done. You will feel the same as a caring devoted daughter. Dementia takes one life don't let it take 2... .pick it up again to its maximum when the job is done

 

[kindred]

When my dad died last year I felt sad but at peace because I know I did everything I could during his dementia years to care and fight battles for him. My feeling as well the day he died was I could not have possibly done any more I had done my very best at every turn taken some very difficult decisions with no regrets that whilst hard for me were the kindest for dad and in his best interests at the time...all decisions and actions I made and took were with the thoughts of when this is all over I can look at myself in the mirror knowing I did my very best for dad.....and finally my task was done. You will feel the same as a caring devoted daughter. Dementia takes one life don't let it take 2... .pick it up again to its maximum when the job is done

Oh what a wonderful, profound thing to say. Dementia takes one life, don't let it take two ... that is so inspiring, thank you with all heart. Geraldine aka kindred.

 

[love.dad.but..]

Oh these are wonderful, profound posts. My OH is now in a nursing home(four months) and I am struggling with what I call prisoner syndrome whereby if I go more than a mile or so from home, I feel ill and have to rush back ... but of course OH is not there any more ... and worse, if I try to do something creative or of my own I feel sick. I become absolutely overwhelmed if I try to do anything you might class as for me. Has anyone else felt like this? love and best, Geraldine aka kindred. I am so glad I can ask you this. xx

When dad was in his NH I visited every other day and had my mobile with me all the time...the instances when the NH popped onto the display as it rang always filled me with dread but I needed the NH to know they could contact me at any time if dad was having any serious problems...in a strange way it also gave me comfort for the many days if they didn't ring...if you see what I mean. The caring role is so intense lengthy and continuous that when through death it suddenly stops there is a huge void to be filled and it took me a few months to adjust and then oddly I started to miss even my dementia verbally aggressive dad but now over a year on my dementia memories include some lovely comical moments as well.

 

[Agzy]

I have a very similar outlook but, as my OH’s Alzheimer’s is in early stages and we are both in our mid 70s, my time is NOW! Sounds selfish? She doesn’t think so and now, after some debates, our respective families support me as well. At present care is not intensive nor is it critical as she can, more or less, look after herself. This is why I have been away in our caravan solo including 7 weeks in Spain, I have done a cultural tour of northern Cyprus and a wonderful coast to coast coach trip of Canada. I have a long weekend planned in the caravan and have booked another 7 week Spanish caravan trip to Benidorm from Beginning of October to late mid November. Pauline urges me to do all this as she knows how I love travelling and how we shared years of doing it together but, given my age (76), I may not have time for My TIME later as it will be taken up with the full time carers role while I am capable. Good luck with your time however, and it’s a blessing you are able to get to it.

 

[Jale]

Thank you for sharing - definitely food for thought as the saying goes

 

[KathrynAnne]

What a thought provoking post! I suppose it is more apt for those of us who look after parents as, in all probability, we will have many years for ‘our time’. I often find myself wondering what life will be like when Mum has gone as it really is a 24/7 commitment. It will certainly be strange to suddenly have time to myself and not have to think about Mum all the time. Mum is 84 and pretty well physically so she could live for quite a number of years. It really would be useful to know how much time is left and then I could plan more but of course no one has a crystal ball which actually works!

 

[MaNaAk]

I have been reading a lot of posts on here from posters whose loved ones are going through the end stages of their dementia and some are rather harrowing and I have an awful dread of when it becomes my dads turn because it is getting closer now, I know that but I keep thinking of something that someone said to me some time ago and it makes me feel a bit better somehow so I am going to share it.

I belong to a hiking group (U3A) although I don't think I have been for about a year now because I am looking after dad and it has become impossible but I used to thoroughly enjoy our hikes through the countryside twice a month on a Friday morning whatever the weather. We were a very varied bunch, most of us were retired and in fact I was one of the youngest when I joined at age 55 and was still working part time. We would often do ten miles before lunch time. I am 61 now and things have changed and I have not been for nearly a year.

Anyway we would always do a different route and everyone chatted to everyone as we moved up and down the line but I often used to end up talking to a woman a few years older than myself as we were both caring for our elderly dads and we would share our stories and experiences of our dads and how we were caring for them. Her dad was over 90 and she lived with him and had been caring for him for a number of years but he didn't have dementia. She always used to try to make the hike because she enjoyed it the same as I did. Then there came a time when she did not turn up for quiet a long time and I wondered why and if it was because of her dad.

Dear Duggies-girl,

You have certainly earned your you time. I now have better nights and I can go out without worrying about dad. I visited dad in the home yesterday and one of the other residents said
another resident was interested in him! He was very pleased to see me and although he kept asking about going home he seemed content. Interestingly enough one of the other residents said that my brother saw him the other day and that his visit was quick so therefore I don't have any guilty feelings about putting dad in that home.

Also I notice that it has been left to me to put labels on dad's clothes, notify the hospital, surgery,
chemist and banks and deal with dad's benefits. I can now definitely say that I am still a carer but I am caring from a far whilst going back to being dad's daughter.

MaNaAk
I asked her how her dad was and she told me that he had died. I was genuinely concerned because I know how long she had been looking after him and I just said 'I am so sorry to hear that' and she smiled at me and 'No don't be sorry, I have done my bit and now it is my time' then she promptly went on to tell me that she had already booked her trip to India that she had waited so long to go on.

She gave me a kind of inspiration in that she had just got on with the job that had to be done because it was her dad but now he was gone that job was finished and now it was her time. She had obviously done her best and was left with no guilt and was just going to get on with the things she had always planned to do and I am hoping that I can be just like that when my dad dies as I feel I am doing quiet a good job even if I sometimes moan about it.

I think that sometimes we beat ourselves up about things that we have no control of even when we have done our utmost. I admired her attitude at the time and it keeps coming back to me and I think that she sort of got it right. Last time I saw her she was off to Peru and so looking forward to it. Personally I think she has earned her 'my time' and I wish her all the best. I want to be like that.

 

[imsoblue]

@Amethyst59 and @kindred, I am right there with you! It's been almost 1 month for me to have OH in a CH. He is still in an apartment setting, but we have our first meeting to discuss his care July 19. My stress level is through the roof!
When I told my friends that OH had dementia, I asked them to promise me that they would not let me get sick too. TP is a godsend in that it lets me know how others handle this terrible lot in life.
I try to realize that my OH left me a long time ago...the man that lives in the CH is not the man I married. I will look in on him and when he needs me I am there. I don't go everyday as I still work full time, but I go a lot.
If someone invites me to go out of town, I will go. I will make myself begin this new chapter in my life although it was not the one I had wanted to write.
Thank you for being there for me.

 

[Cazzita]

Oh wow, such inspiring posts, all of them. Agzy, go for it!

 

[Duggies-girl]

I have a very similar outlook but, as my OH’s Alzheimer’s is in early stages and we are both in our mid 70s, my time is NOW! Sounds selfish? She doesn’t think so and now, after some debates, our respective families support me as well. At present care is not intensive nor is it critical as she can, more or less, look after herself. This is why I have been away in our caravan solo including 7 weeks in Spain, I have done a cultural tour of northern Cyprus and a wonderful coast to coast coach trip of Canada. I have a long weekend planned in the caravan and have booked another 7 week Spanish caravan trip to Benidorm from Beginning of October to late mid November. Pauline urges me to do all this as she knows how I love travelling and how we shared years of doing it together but, given my age (76), I may not have time for My TIME later as it will be taken up with the full time carers role while I am capable. Good luck with your time however, and it’s a blessing you are able to get to it.

You go @Agzy and make the most of your time while you can, sounds like an adventure to me.

 

[Fullticket]

Kindred - how you feel will/is passing. I 'allowed' myself to be in a bit of a dark place for a while but if I had not come out of it naturally, I would have started to challenge myself to do things again - gently but firmly (tough love for myself perhaps). Our lives go on and it would be foolish and wasteful to subjugate ourselves to a life of misery (golly, long words this morning, where did they come from?). Without being frivolous and making light of the thread, yesterday I decided to liberate mum's ashes from the funeral directors. I parked in the supermarket car park and, foolishly, I went straight to the funeral directors and was a bit ignorant of how they would be presented - in a big, heavy cardboard tube with pictures of sunflowers on. Nothing subtle about it so, as it looked like rain and I did not want a papier mache mum all over the town, I went back to Lidl's (other supermarkets are available!) and strapped her into the passenger seat. I met some friends in the supermarket and they all came back to the car to say hello... Mum's obsession towards the end was telling me when she saw a field (we live in the country so this was several times a day) that they reminded her of when the Americans were posted here in the war and they were amazed at how small our fields were because theirs were so big. She didn't mention it on the way home yesterday (!) but I felt I had allowed her one last go at it. It took a while to steel myself to go and get her ashes but now I feel a bit more 'complete.'