A story which might help

[Duggies-girl]

@Whisperer I am still here too almost 4 years after dad died on 7/2/20 just not quite as often. I still have immense sadness about the whole thing, I feel like it was unfair for dad to go like he did and it was not the ending that I hoped for although it was peaceful. I feel like it is unfinished, there should have been more and I have been let down somehow.

Like you it has taken me a long time to get where I am today. I used to be a bit of a whirlwind, always with some project in the house or garden but now it just seems like extra work. I have decorated three rooms in this house over the last two years but none of them are finished, that's not like me but I no longer have the get up and go, I just veer sideways all the time. I am not alone as I have a husband and a son but I no longer see my brother since I paid him his inheritance money and I have lost a circle of friends although I blame that on covid, I blame a lot on covid, it robbed me of what should have been a time of recovery after dad, instead I went from dad's sofa to my sofa and that was it, unfair.

I still do things that dad would have liked me to do which helps some. I send him birthday wishes and notes in my calendar on my phone sometimes to let him know what I have done which is crazy but it helps me to include him. I have travelled a bit these last two years mostly to see some of the places that dad saw when he was at sea and that gives me a lot of joy because I know he would be happy for me. I suppose it is still all about dad.

I hope that you can get out of the fog and come to terms with what happened and find some happiness in your life. I know that is what your mum would want because she was your mum and the most important thing to mums is that their children are happy. My mum told me that.

 

[Izzy]

Welcome back to the forum @Whisperer and thank you for sharing your thoughts.

I went back to read your original post. As a former carer I found this part in particular so powerful -

On a bad day remember it is okay to feel bad in the fog. It is disorientating, deeply unpleasant, gut wrenching at times. But that is the price we pay because we did care.

 

[LyndaR]

So emotional reading these posts. My OH died 5 months ago and I find it an emotional rollercoaster. Yesterday I was fine, today non stop tears.
I thought when my OH passed it would be easier to pick up my life again after 7 years of caring, but it isn’t. Even though caring was so very hard at least he was physically here.
No one prepares you for the horror of Alzheimer’s, but no one can prepare you for grief either. This forum is a massive support.

 

[Whisperer]

Dear All

For those who saw my rather long rant posted late yesterday my apologies. I have this morning removed it. This post is more positive, points the way forward for me and again it might be of help to others. Make of it as you will. Last night I found the keys to the car, writing this post represents me turning the car round and finally engaging first gear. Mum went through the wall I cannot, but she will always be around me spiritually, in my thoughts, memories, beliefs and chosen actions. Only I can mislay her, if I allow myself to be overwhelmed by negative emotions and feelings. To my mind mum is with me on the front passenger seat, so in reality I can never be fully on my own as I face the trials and tribulations of life. I need to keep hold of that simple thought, when grief next washes over me, as it will in the future at unpredictable moments, as well as anticipated ones like important anniversaries.

My mother’s struggles with Vascular Dementia and a failing physical body are now over. The third anniversary of her death is next week and I had been slipping into sadness, grief, anger and feelings of loneliness. They were the emotions causing me to post on this thread earlier in the week. They are not very positive drivers on reflection. The circumstances of mum’s death were very distressing. Mum did not deserve Dementia or COVID arriving in the last year of her life, to so distort normal day to day life. Nobody did. That said I will have to learn to live with those memories, painful as they are. From this point onwards they will be a private matter. Crucially I need to hold onto the simple truth that they do not define my mother’s life and deeds. So next Friday will be tough, but I will endeavour to remember pre Dementia mum and treasure those memories.

Late last night I sat quietly for several hours and really asked myself a few searching questions. I came to several answers which I now need to carry forward with me in my future years.

1) Grief is the price we pay for loving a person deeply and being lucky enough to have had them in our life. Did I love mum unconditionally - very much so. Did her presence in my life enrich it profoundly - again very much so. Okay this grief comes and goes in it’s intensity, it is deeply unpleasant, I wish it would leave me but I suspect it never will fully. Can I live with it - again yes I can. It is the ongoing price I will pay for having known, loved and shared precious time with a remarkable woman. I am willing to pay that price now and in the future. I would rather I did not have to, but it is a small price to pay for such a profoundly enriching experience in my life.
2) Would I want mum physically back on this world to go on suffering the indignities, ravages and cruelties of Dementia, a very definite no. Could that ever happen any way, is a definite no. To entertain the idea by wishing mum was still physically present in my life is giving me pain, both emotionally and mentally. Mum has departed the physical world, I remain in it for however long my own piece of string is. The best way I can thank her for being a wonderful mother, companion, soul mate, etc, is to live a good life, helping others where I can and honour her good name in my thoughts and deeds. Until now that felt a bit of a betrayal. To look towards the future felt like turning my back on the precious past. Last night sitting alone, asking myself questions, I realised I had been looking at the matter previously as an either or choice. Belatedly I now realise it is a daily practice, combining building a new future but incorporating links with the past into it. I will continue to talk to mum each day, when confronted with doubts on what to do simply ask myself what would her advice have been, based on how she lived her own life. Remember her sayings. Mum used to say ”let’s get off on an adventure” whenever we had a day out. Well I am now off physically on a new adventure. Mum you are welcome to drop by into my life anytime you want to.
3) Be clear in my own mind the Buddhist concept of impermanence in all things is true. Relationships end at some point, health will gradually fail, material things that today give pleasure will at a future time gather dust in the cupboard, etc. Emotional pain springs from an unwillingness to accept this status in our lives. When it comes to physically letting go of loved ones that is the hardest thing of all. However I now realise there is a solace to add to that teaching. Physically it might be true, the loved one has moved beyond us. However in our thoughts, memories and emotions they can still be remembered. The secret but hard part is to keep those things positive, loving, nurturing, guiding, etc, not wrap them only in negative feelings and thoughts and most of all longings. For me and I suspect most grievers, that will always remain, to a degree, work in progress. To hold onto simple truths when surfing deep flows of distressing emotions.

So sorry again for the deleted rant. The above seems more use hopefully to others trying to stumble through the fog of personal loss. I will remain a lurker on this site, at times trying to offer empathy, support and kindness to others. One small way I can remember mum positively and lovingly. Her illness and my related caring role brought me to this site. As my grandad used to say “nought in life is wasted“. TBH my life was very shallow pre 2014. The caring role changed me profoundly. My new template means I cannot fit back into my old way of living and last night, I realised on reflection that is no bad thing. I must now decide how best to use the experience, knowledge and skills that caring taught me. Most importantly it has changed what I think is important in life and what is background clutter.

I close in wishing you all well that have read this far. Hopefully my words can be of help to some of you, putting them down has helped me. Please be gentle with yourselves, move at a speed you are comfortable with and always remember just like the caring role, the process of dealing with grief is different for each of us. There are some common threads, but also some very uniquely individual ones. All the best.

 

[Whisperer]

@Whisperer I am still here too almost 4 years after dad died on 7/2/20 just not quite as often. I still have immense sadness about the whole thing, I feel like it was unfair for dad to go like he did and it was not the ending that I hoped for although it was peaceful. I feel like it is unfinished, there should have been more and I have been let down somehow.

Like you it has taken me a long time to get where I am today. I used to be a bit of a whirlwind, always with some project in the house or garden but now it just seems like extra work. I have decorated three rooms in this house over the last two years but none of them are finished, that's not like me but I no longer have the get up and go, I just veer sideways all the time. I am not alone as I have a husband and a son but I no longer see my brother since I paid him his inheritance money and I have lost a circle of friends although I blame that on covid, I blame a lot on covid, it robbed me of what should have been a time of recovery after dad, instead I went from dad's sofa to my sofa and that was it, unfair.

I still do things that dad would have liked me to do which helps some. I send him birthday wishes and notes in my calendar on my phone sometimes to let him know what I have done which is crazy but it helps me to include him. I have travelled a bit these last two years mostly to see some of the places that dad saw when he was at sea and that gives me a lot of joy because I know he would be happy for me. I suppose it is still all about dad.

I hope that you can get out of the fog and come to terms with what happened and find some happiness in your life. I know that is what your mum would want because she was your mum and the most important thing to mums is that their children are happy. My mum told me that.

Dear @Duggies-girl thank you for replying to my post. A lot of what you say makes sense to me. I have a photograph of mum enlarged above the mantel piece. I talk to her several times a day. It just helps me like your notes to your dad. Travelling to see places your dad had been to makes sense as well. I am in the process of reapplying for a passport, with a view to possibly visiting Switzerland. Mum went on a coach trip in the early 1990s and the mountains captivated her. I was thinking going there might be a good experience for me, a link with mum, a new experience, but TBH travelling alone I find a daunting prospect. Living alone has been one of the hardest parts of mum passing. Coming into an empty home, sitting alone even if reading, listening to music, etc, just things odd. I miss her pre Dementia banter and wise words.

I have an estranged brother and since mum died my relationship with my other siblings is not that close. They both have families, work, friends, etc, and I have to accept I am on the edge of their worlds. I knew these days would come, but knowing and living them is two different things. I am not sure why but this third anniversary of mum’s death is somewhat better than previous ones. My last post at the weekend I found very helpful just putting it down into words.

I am aware you have an anniversary pending so I will close wishing you well. Think of it this way. You have mostly decorated three rooms. Mum was very house proud and insisted she would do all of the decorating alone, whilst I was at work. The house needs doing too to bottom but I find it very daunting. I hope to start with the little bedroom this year. Problem is I live alone, no one visits, so I keep thinking maybe next year.

Thank you again for replying. My very best wishes.

 

[Whisperer]

So emotional reading these posts. My OH died 5 months ago and I find it an emotional rollercoaster. Yesterday I was fine, today non stop tears.
I thought when my OH passed it would be easier to pick up my life again after 7 years of caring, but it isn’t. Even though caring was so very hard at least he was physically here.
No one prepares you for the horror of Alzheimer’s, but no one can prepare you for grief either. This forum is a massive support.

Dear @LyndaR I think the best thing about this forum is that members understand certain things without the need for explanation. Non carers I think struggle to understand the deep sense of loss that carers experience. They think well so and so had Dementia they could hardly speak, Or well they had time to prepare for the loss, etc. The reality is the caring role and related stresses take up all of your focus. You not only lose your loved one but also the caring role. You get hit by grief and have more time to endure it.

The emotions from day to day you are experiencing are painful but natural. As you say it is an emotional rollercoaster. In the early stages of grief not much anyone can say will help. You have my empathy and understanding. I well remember the months which followed mum’s death, the Covid support bubble rules leaving me on my own at that time. Strangely adding to this thread has helped me this year. I deleted an initial rant and put something more meaningful in its place. Sitting for several hours I had a long mental chat with myself. I read a while ago an important point. No matter what you are experiencing good or bad, “this to will pass”. Nothing in this world is permanent. It means the dreadful pain of loss, but it also means that pain will not last forever, it will reduce, change, mellow, overtime. Please take the time to heal in away you are comfortable with. Each person grieves different and will find their own coping methods. My very best wishes for your future. Keep posting and reading threads here. I find it really helps. I got help and support here whilst caring for mum and strangely keeping in touch helps me in a different way now.

 

[LyndaR]

Thank you so much for your reply.
I will continue to use this forum as it really does help.
I have also continued going to the dementia cafe we used to attend weekly.
We had made friends there and I go and help make drinks and talk to the other carers.
It makes me feel as if I am still useful. Days can be lonely after so many years caring.

 

[Whisperer]

Dear All

I had intended to reply to those people who had recently replied to this thread individually, having started to do so yesterday.

I am not sure why but since returning to this thread recently I have experienced a real change in my outlook and emotions. A few nights ago I sat into the early hours of the morning having my first real conversation with myself in a long time. TBH I think I had avoided doing so as previously I found such deep soul searching upsetting. Any way I posted what I had arrived at decision wise, replacing a prior rant which was not very positive.

Today I had two experiences which seem to show I am making progress at this difficult time. I am under no illusions that my grief and emotions will at times in the future come back to upset me, However I think I will be better placed to remember the saying “this to will pass”.

1) Mum used to say let’s get off on an adventure. Well on the Friday anniversary of her death that is what I will do. I will take her much loved teddy bear Crawford with me to the Garden of Remembrance, where we will pay our respects and look again at the entry in the remembrance book. Then I will strap him into the front seat and we will burn some rubber. Off to Wimborne to have a look around the Minster, get some lunch, see “what is around that next corner as you never know what you will find”. One of mum’s old sayings.
2) I remembered something mum said once and burst out laughing. My dad was a violent and nasty person. My childhood witnessed violence and home life was miserable. Years later mum said she always ensured we had baked beans on nights he went to night school. She enjoyed imagining his discomfort in trying to be polite as the beans passed through the system. When I looked shocked as mum was such a gentle soul she said “well I was not going to let him have everything his way was I.”
Oh mum you old tinker bless you. I can now really laugh, remember pre Dementia mum fighting back against a violent bully in the only ways she could bless her.

I am not sure why but coming and posting on this thread has really lifted a shadow off me. I will miss mum more acutely on Friday, I will share it with her favourite teddy bear, but we will both have a day out to celebrate her life. I now really appreciate mum’s life cannot be defined by her Dementia experience. That was something we shared, I was privileged to care for her and learn from the experience. Strangely I now realise those years were dreadful at times, but they also brought us together and strengthened my love for her. I am lucky to have had a great mum and friend in my adult life, lucky to now have the memory of her. Whatever I achieve or do in my remaining years I will partly do to celebrate her life and contribution to making me who I am.

So wish me and Crawford luck on Friday. If a black Kia burns some rubber passing you in the New Forest, a teddy bear hanging out of the window and Beethoven playing in the background give us a wave. Yes mum I will respect the speed limit and Crawfie will wash behind the ears before we set off. All said in gest but it has been so long since I have done that.

Thanks to everyone who helpEd and supported me over the years. I will lurk in the shadows here and post if I think I can help or support someone still caring or now experiencing grief. I am going to leave it for a week then contact a relatively new local Dementia care group who meet weekly. Over my services as a volunteer making drinks, talking to carers and their loved ones, having a sing along, etc. My pain over mum has prevented me from wanting to get close to Dementia again, but now I realise there is a real need and it will do me some good.

My very best wishes to everyone who has read this far. Crawfie sends his regards as well LOL.

 

[Chizz]

Everyone always has to do it their own way.
Best wishes

 

[Whisperer]

Hello

Unfortunately my plans for the third anniversary of my mum’s death on Friday came to nothing.

The pain of the loss did not hit me fully this year until that morning. Whether that is progress or not I cannot tell. The day was just one of sad reflections.

I think I have to accept that Dementia care profoundly changes the carer. The CRUISE organisation locally still has no capacity to provide counselling. NHS Talking therapies assessed me as not being depressed but as suffering the effects of grief, aggravated by what happened at the hospital, the year of prior social isolation with mum, the poor funeral mum got, fear of Dementia entering my life. I was advised CTB is not effective in such cases and effectively told goodbye. I recognise many others are suffering as well, but when you wake up in the dark and your immediate thoughts and feelings are all sad, lonely or worse I can only focus on my own circumstances. Perhaps if I had a partner, adult children or friends to talk to face to face, I could make progress, but it is effectively just me, I, myself, etc.

I do recognise that fear of Dementia, reinforced by having no partner or adult children as a support mechanism to discuss it with. Like everything else I face that fear on my own.

One thing I can do is to presently stop visiting this site. TBH I feel like an imposter as my caring role is over. Reading about the struggles of others just brings back so many memories. I can offer advice and support but it seems so little. Likewise in my voluntary work I have decided to stick with telephone befriending with the elderly. Joining the new local Dementia care group would just be to hard at present.

Part of me says pull yourself together, but another softer and gentler voice says you have done your lot at present. That is the voice I have decided to finally listen to. I need somehow to try and heal, but there seems to be no support mechanisms I can get advice and guidance from. My emotions at key dates are all over the place and in between I exist not really enjoying life. This year I managed to delude myself I had made some real progress.

Please allow me to make a few closing observations.

1) For whatever reason society does not value the work done by carers. Likewise when that role is over, no matter how long or demanding the role was, they are largely left to recover on their own. Carers are their own support mechanism as demonstrated by this forum, but in all honesty it is not enough. Politicians and society at large really need to step up to the plate and contribute.
2) Dementia care is really tough, not just physically but also mentally and emotionally. I think my own cohort got double hit by the COVID situation making everything so much harder. I genuinely wish all present day and ex carers all the very best for the future. Please make of it as best as you can.

So I am signing off and going to try and repair myself as best I can by my own efforts. I suspect that will always be an incomplete task, a hobbled together solution. Maybe one day I will feel able to return or volunteer in the Dementia field in some way. Presently I just have to admit Dementia has beaten me, even after three years following mum’s death it’s shadow still falls over me. I really had hoped this year would be different but the feelings are just as raw.

 

[Chizz]

Thanks @Whisperer for your post and baring your thoughts.
You are, of course, entirely right - there is no real care for carers. You just have to do your own thing. I send best wishes for this.

You said you have started as volunteer telephone befriender for the elderly.
I do hope you can keep this up, it is v worthwhile and for lots of lonely people out there it is a lifeline friendship and greatly appreciated.
Best wishes.

 

[Whisperer]

Dear All

I just wanted to post an update. My previous ones last month were not my best.

since my last one I have joined a weekly care support group, helping to keep the loved ones safe and occupied, whilst their carers get a break for a few hours and advice with any problems they have. I have been attending for about six weeks now.

My fear of Dementia one day entering my life is still present, but my only regret is that I let that fear prevent me helping others, caught up in the Dementia whirlpool, earlier than I have.

Funny how life comes around on itself. Before Covid19 I used to attend a monthly carers group and was one of the carers getting help and advice, a chance to meet other carers and just talk.

Now I am in another room supervising Dominos, some able to play unaided, others requiring various levels of support, which I and other volunteers provide. Tea,coffee, cakes, some humour, some more challenging moments as we will all know about.

I guess as the grocery TV ad states every little helps.

I am not sure quite what has happened since the anniversary of mum’s death in early February. I thought I was doing well but then on the day I was just completely overwhelmed by sadness and that ongoing feeling of being incomplete, part of me having gone walkabout. Life lacking any colour or direction. Since then talking to a counsellor I now acknowledge part of my problem is survivor guilt. It makes no sense but as a survivor it makes sense to then act positively to help others. I seem to have made some better progress. I have become reconciled to forever having sad memories, a sense of loss, a re evaluation of what is important and not important in the world, as I re enter it after my caring experience. Not sure if it is resignation to those facts, a better ability to come to terms with them or something else. Dementia care just stirs up so many issues for carers. I guess a background persistent feeling of the above is now accepted, with the odd flare up caused by special dates, events, a piece of music, etc.

Any way I am now a volunteer at a well organised weekly Dementia care group, a telephone befriender for the elderly, work part time, read and listen to music in my spare time. I have no real social life but as you get older, no partner,etc, making new friends just seems very hard.

My very best wishes to everyone still caring for a loved one. Also to ex carers struggling to emerge from the caring role and the physical, emotional and mental demands it makes on them. I will remain a lurker on this site and offer any help or advice where I can. I can emphasise with both carers and ex carers. Dementia care is really tough, but so long as politicians and most of society decide to ignore it the full weight will have to be carried by family, friends and neighbours. Sad but true.

 

[Kevinl]

Hard one to get out of the carer bubble, even when caring ends and hard though caring is, I find moving on is even harder.
It's a bit like retiring, moan about having to go to work, miss it when it's gone. Have to go and tell myself to shut up. K

 

[Chizz]

Thanks @Whisperer for your update.
Yes, anniversaries of special dates bound to jump out at you.
You said you'll forever have sad memories, and I can understand that, but there were good and happy times too, and perhaps remembering some of those may help balance the past.
Helping others is a great thing to do. I hope in some way it'll help you too!

A friend of mine, when he retired from full time employment, took up driving for the day centre for seniors in the next town. He would drive their min-bus to collect people to go to and get from the centre at the start and end of the day centre day. Sometimes, he'd stay on and have cup of tea, etc and gradually got to know the other helpers at the centre. He thought he'd do this little "job" for a year or two until he thought of something else. Well, he's still doing that little "job" 22 years on! The day centre helpers, and the visitors have given him the focus in the community he didn't know he was seeking, but if asked, he'll tell you he's really pleased he found it (by chance)!

Best wishes. Volunteering is really appreciated, even if people don't always say so. So I thought I'd say it - thank you.