Hi @Whisperer I hope you can have some peace today maybe take that walk that mum liked. I visited my mum and dads grave again today thinking the Hydrangea my daughter and I cut from front garden last week may have died but actually looked very pretty. I popped the roses I took in the other memorial vase so grave looked nice the headstone not there as was taken away until end of year maybe January. I did not get on with my only sibling a sister we haven't spoken verbally since a few days before my dad passed so 7 months now. The last year or so of dads life blighted by the progression of his dementia and cruelty and abuse inflicted on me by my sister by her words spoken or otherwise. Dad was also our bond when mum passed but we had not spoken in over 20 years prior to the week of her passing. My dark moments did not have the support of my sibling and no kindness between us when he passed. I would have loved to have had a loving sister but there was so much conflict and I am glad in some ways that part is over. I wish for you and everyone to be safe so much kindness and support here.
Am feeling especially sad
- Thread starter Wildflowerlady
- Start date
Hi @MaNaAk nice to hear you had a lovely day. I have not spoken a word with my sister since a few days before dad passed in January and no emails etc since May when finalising dads affairs . It hurts that for all her berating of me and unkindness she has not visited my mum and dads grave. In one message she said her husband had removed her funeral flowers. Not one card not one flower on their grave not even on Fathers day. I cannot understand what goes on in her head for her to have had such spite towards me she is only 10 minutes walk from the cemetery so not like its far for her to go. My door is closed to her permanently I cannot let her into my life again.
Dear @Wildflowerlady,
Your sister's husband sounds a bit strange as well. After dad's death the care home asked me how my brother (not brothers) was and also I got a sympathy card from the relatives of another resident which said that dad was constantly talking about his daughter. My youngest brother saw dad once between Xmas and dad's death in June 2019 and said he felt forgotten!
MaNaAk
Perhaps I should explain? sisters husband removed the funeral flowers that sister and her daughter bought from the grave when the flowers had died which tbh wasn't long at all due to the snowy weather. This makes me think that since dad passed she has never actually returned to the grave there has only ever been flowers laid that I take or my daughter when she can visit. I just about managed to get there the day after I came out of hospital as the path to the cemetery was about as far as I could walk from my car ( two days after the funeral as wanted to visit the grave as soon as possible ). My flowers had obviously been lovely which my daughter helped to arrange with the florist for me from her home over 200 miles away. They had already started to turn as weather bad which florist warned me of so said for me to try see them asap she kindly sent video and photos so I could see them at their best on morning of dads funeral. On my next visit a few days later her flowers and her daughters were gone and a email said her husband had been there to take them off. Dads CH initially did not realise two daughters as I had taken dad and all his bits in so they did mix up a visit but fortunately when they realised they did sort it out.
@Wildflower lady, sorry that all these anniversaries are making you sad. Is there something you can do to celebrate your dad in a way that brings back happy memories? I was never a carer for my dad, who died suddenly aged only 70 but I like to have a drink in canal side pubs and remember his love of boats, water.
Dear @Wildflowerlady
Thank you for your reply. Unfortunately yesterday hit me like a sledge hammer. I thought I had been making some progress getting over mum dying but no that is not the case. What would have been her 90th birthday reduced me to tears and brought anger to the surface again.
Mum had a few days palliative care at the local hospital before dying of heart failure. it was the time when Covid deaths were at their height and hospital staff were run off their feet. I am not blaming anyone but the start of the promised palliative care was delayed, then it was intermittent until a driver was used. Mum had periods of anxiety and discomfort. I had to chase to get what had been promised. Mum deserved better. My siblings did not join me at the hospital, wishing to remember mum as they last saw her on Skype. I lied mum had a peaceful death which it was ultimately. I cannot ever tell them the truth of what happened, what would be the point of now hurting them. That does not take away the emotional hurt of confronting those last few days alone with mum in a side room at the hospital. Watching a precious loved one have an uncomfortable period of time in an institution that should have been able to prevent that from the off. Again I am not blaming staff run into the ground, on a ward having 4 staff when the normal quota would have been ten.
Exhausted I came home to sleep to be woken an hours later and told mum had died alone. I went back to the hospital and the staff gave me time to say goodbye before moving her body. I sat in the car in the hospital car park crying my eyes out and never felt so alone in all of my life. God knows how I drove the 20 odd miles home in torrential rain. A month to get an excuse of a Covid funeral arranged, all the time alone in the house which was now so quiet. I promised mum years ago if she ever was taken into hospital at the end I would be with her and not let her die alone. I tried my best but was exhausted by the caring role before she went into hospital. Totally irrational but I keep apologising to mum for letting her down at the end. I did all that I could but part of me feels that I failed her.
I am reduced to tears replying now. Just need a safe place to vent. I guess I am overrun by feelings of guilt. We were shielding for 11 months, in the last 3 I needed outside help but fear of Covid meant I like many other Carers just muddled on exhausted. What I want to know is when will the bulk of society acknowledge what Carers have to go through to try and protect loved ones with Dementia. It just feels like Dementia is something Society will not speak about.
Sorry for the rant but somehow I have to get this anger and resentment out of the system. In many ways I feel isolated from society even as lockdowns end. I have two siblings I have some contact with, but now must always be mindful what I say about mum’s last months and final days at the hospital. The lie must remain intact but that means I have no one to talk things over with. I am sorry your relationship with your sister has ended but from what you say perhaps better it has. Please take care and sorry again for the rant.
Hello @Whisperer apologies not needed this is always a good place to rant. I've just read your post and felt the need to reply. I often feel very sad when reading others posts and yours is one of them. I can relate to some of it. My dad only went into a CH in October last year carers at his home had been struggling as his dementia accelerated and he started to get aggressive they gave 28 days notice. We had no choice in the end but to allow dad to be admitted into a CH for Social Services to assess if he could remain in his home but we already knew or at least I did that dad would be best in 24 hour care which neither sister or I could offer him. Dad didn't do well and he was admitted to hospital as he wasn't eating much and CH were concerned, his appetite was getting poor at home prior to this often refusing his hot lunch. Everything accelerated the hospital found a ulcer which they treated and a scan revealed he had suffered a small stroke. I had thought his speech had been garbled in fact I even queried with the CH on a call to dad if it had been dad on the telephone as hadn't sounded like him. Restrictions because of Covid meant hospital visits were not allowed until doctor decided that dad was actually End Of Life about 13 days into his stay, we hadn't been allowed in CH much either. I visited dad in hospital over a three day period before he was transferred back to the CH he seemed quite bright on one visit but pretty much slept the other two times. I was told it was considered unsafe for dad to be given food or fluids which I did query because it just didn't feel right but hospital said they would offer and was up to dad then. Dad kept saying you can make a tea can't you so I said did he want one he said yes but when nurse asked he said no. Dad wasn't interested in food or drink although when he went back to CH apparently he asked for a cup of tea as he went through the doors from ambulance transport. My dad actually didn't eat or drink again the hospital said Nil by mouth on his discharge notes for CH although CH said they did query it because he asked for a tea. I was told by CH having spoken with their own GP that offer could be made but by now if there had been any inclination to want something he had lost it. I was able to visit dad as CH were very good about allowing my sister and I to visit because of dads End of life situation. Dad clung on for days almost two weeks it was a very upsetting time he was already a slim man but looked dreadful as the days went on. I visited and apart from one visit dad was never really able to speak or acknowledge I was there. I was being careful showered washed hair when got home every visit from hospital and CH but the day before dad passed I got a call around 40 minutes after I got home to say the routine test for covid taken the previous week from dad was back positive. I was told that I could still visit dad if I wanted but my visit now would be limited to just 10 minutes and a shield added to the PPE already given. I decided having discussed with my partner that I would still go into see dad how could I not he was my lovely dad. I had spent 3-4 hours sitting with dad over the last weekend both days hoping that dad would pass so that he could have a family member with him I did not want dad to die alone. I said I would come at anytime morning/night as could be there in around 15 minutes a short drive away and they promised they would call but did warn there may not be time for me to get there. As I could now only see dad a few minutes the chances of being with dad were very slim and sadly that was the case around four hours after my 10 minute visit I got a call to say dad passed. I was gutted as they told me he was alone ( I asked ) they said had checked in on him but when they checked again he was gone. I suspect the covid situation had made things more difficult. I was told I could go and say final goodbye before funeral company arrived but was told I would have to go quickly and be quick in the room etc. I went and said my goodbyes. When I got home I panicked as they had asked for me to pick clothes but I just couldn't think whilst there so called them and asked that they do find some of his new trousers etc to put on him they assured me he would have nice stuff on including socks shoes etc.. My sister chose not to visit dad again once she was told about covid, she had arrived at the CH after my visit the day they found out glanced in his room and left. I still have questions in my head about what medication did dad get if any. I know the CH said drugs were available per arrangement with hospital but sometimes they are not needed. I think by the time I thought about it was too late to ask but I don't believe a syringe driver was used ( mum did have one). Sadly I caught covid as was really unwell had to be hospitalised after 12 days with pneumonia and a blood clot in my lung for which I am still being treated for with thinners. I missed dads funeral by one day and I think not only do I feel guilty he died alone but also guilty for sitting in his room for hours hoping he would pass whilst I was there so as not to be alone. I feel terrible that I missed the funeral that I arranged but by the time I went into hospital I felt too late and unfair for others to change arrangements. I find myself saying sorry to dad for missing his funeral all the time but I try not to feel guilty that dad went into the CH as he clearly needed more care for quite a while he started to destroy things in frustration. Dad was really anxious at home but I still picture the day I took him reluctant to get out my car and needing some persuasion suitcase hidden in the boot. I do feel guilt for telling dad it was only for a day or two and knowing it was not. I had no idea we would lose dad so quickly 8 weeks and one day after going into CH but we were told dads dementia was more advanced than was originally thought. Dads passing was recorded as a cerebral event along with advanced dementia for whatever reason covid was not recorded at all. I can't offer much other than to say please take each day as it comes some will be much better than others. I should really take my own advice but its not easy. I for one am very sad and tearful at the moment because a lot is going on and I still have a issue I need to be resolved which is upsetting me. I know some of it will pass and I will have some better days mixed in. Its five years on the 23rd august since mum passed another day where I will feel the hurt more. Take Care as people always say here be kind to yourself and know we all know everyone has tried their best. ? A hug for you.
oh I'm so sorry I got your name wrong. I'm afraid that I do often get the wrong name - just ask my children! I do remember exactly what happened to you, though - everything about the problems with your sister and her telling you that you were not doing enough, your OH having Parkinson's and you not being able to do breakfast for your dad. I remember being angry on your behalf. And then the covid.....
Grief strikes at all times and it is still very early stages for you.
Dear @Wildflowerlady ,
Please keep posting so that we can help feel a little better. Caring for someone with dementia brings special memories and I am like you in that grief is compounded by invisibles.
I hope you're okay
MaNaAk
Please keep posting so that we can help feel a little better. Caring for someone with dementia brings special memories and I am like you in that grief is compounded by invisibles.
I hope you're okay
MaNaAk
Dear @Wildflowerlady
Thank you for your reply. Unfortunately yesterday hit me like a sledge hammer. I thought I had been making some progress getting over mum dying but no that is not the case. What would have been her 90th birthday reduced me to tears and brought anger to the surface again.
Mum had a few days palliative care at the local hospital before dying of heart failure. it was the time when Covid deaths were at their height and hospital staff were run off their feet. I am not blaming anyone but the start of the promised palliative care was delayed, then it was intermittent until a driver was used. Mum had periods of anxiety and discomfort. I had to chase to get what had been promised. Mum deserved better. My siblings did not join me at the hospital, wishing to remember mum as they last saw her on Skype. I lied mum had a peaceful death which it was ultimately. I cannot ever tell them the truth of what happened, what would be the point of now hurting them. That does not take away the emotional hurt of confronting those last few days alone with mum in a side room at the hospital. Watching a precious loved one have an uncomfortable period of time in an institution that should have been able to prevent that from the off. Again I am not blaming staff run into the ground, on a ward having 4 staff when the normal quota would have been ten.
Exhausted I came home to sleep to be woken an hours later and told mum had died alone. I went back to the hospital and the staff gave me time to say goodbye before moving her body. I sat in the car in the hospital car park crying my eyes out and never felt so alone in all of my life. God knows how I drove the 20 odd miles home in torrential rain. A month to get an excuse of a Covid funeral arranged, all the time alone in the house which was now so quiet. I promised mum years ago if she ever was taken into hospital at the end I would be with her and not let her die alone. I tried my best but was exhausted by the caring role before she went into hospital. Totally irrational but I keep apologising to mum for letting her down at the end. I did all that I could but part of me feels that I failed her.
I am reduced to tears replying now. Just need a safe place to vent. I guess I am overrun by feelings of guilt. We were shielding for 11 months, in the last 3 I needed outside help but fear of Covid meant I like many other Carers just muddled on exhausted. What I want to know is when will the bulk of society acknowledge what Carers have to go through to try and protect loved ones with Dementia. It just feels like Dementia is something Society will not speak about.
Sorry for the rant but somehow I have to get this anger and resentment out of the system. In many ways I feel isolated from society even as lockdowns end. I have two siblings I have some contact with, but now must always be mindful what I say about mum’s last months and final days at the hospital. The lie must remain intact but that means I have no one to talk things over with. I am sorry your relationship with your sister has ended but from what you say perhaps better it has. Please take care and sorry again for the rant.
Dear @Wildflowerlady
Thank you for your very personal reply. The painful events you have experienced reassure me that I am not alone in my current grief and emotional upset. I am not sure what that is worth but it helps. Mum meant everything to me just like your dad and watching a loved one torn a part by Dementia is a dreadful experience. Mum passing ended her suffering but it has left me in a very mixed up emotional state. I think the key word for me is that I feel totally “detached“ from life, I had a very real purpose which has now gone. I think I am depressed and been given ADs by the GP but until now I have been reluctant to take time. I think the time has come to bite that bullet.
I am truly sorry for the grief, sadness and heart break you have suffered. Dementia throws up many unique issues, but it seems one particularly hard one is how Carers feel after they have lost the loved one. Dreadful memories, the loss of the caring role as well as the person, trying to rebuild a life which has shrunk down to caring as the role demanded. Where the loved one ended up in a CH the caring family members are frequently racked by feelings of guilt as you outlined very clearly. Deep down I have a fear one day Dementia will come for me.
As you say take one day at a time. I will regard each as a blessing. I hope that time passing will help but others on this forum are clearly still deeply impacted years after the loss of the loved one. I wish you well for the future. You did your very best for your dad. I can relate to you apologising to your dad as I do to my mum. Illogical but then that is what emotions are. Thank you again for your very open and honest reply. We have never met but you strike me as being a very lovely person. Please take care on your journey through life.
