losing my mum

[deb beckett]

Hello everyone
I joined talking point at the end of december and talked about the awful illness this is and the fact that my mother has suffered with this for 10 years. I am now very sad to say that she has passed away 2 weeks ago and i can honestly say myself or my family did not envisage the type of death she encountered. My mother died of Kidney failure secondary to dehydration and dementia which has become apparent in the nursing home she was staying in. The problem is we are struggling to understand why she was so dehydrated before being admitted to hospital and the fact the the nursing home did not advise us of this at all. We requested that a doctor be called to see her as we had noticed a distinct deterioration in her and we actually stated she looked very dehydrated and that when we tried to give her a drink she would not swallow this. we fully understand the final stages of dementia: and the fact that the swallow goes it is very difficult to give them any food or liquids.
We are struggling to cope with the loss of her and are all devasted she has gone from us due to this horrible illness. Nor were we aware of the fact that she could die in such a way as to see her in pain for a number of days before pathway was finally introduced. I am wondering if anyone else has experienced this if this is a common end to alzeimer sufferers. At present we are still trying to come to terms with losing her and the way in which she died but worst of all is how we try to lead some sort of normal life without her due to the fact all our focus was on visiting, supporting and caring for her during the last 10 years. It has left a huge hole in my life and i don't know what to do......

 

[Rachel T]

Hello Deb,
I am so sorry to hear the sad news of your mum's passing. At least she is not suffering any more.

I know just how you feel my mum died in a simular way on New Years Eve.

My mum also had cancer. She was eating and drinking, but had difficulty in swollowing right up until Boxing day. That evening she was put to bed and slipped into a coma and passed away 5 days later without ever drinking or waking again. She did seem to be at peace and as far as we could tell she had no pain. I can only imagine what it must be like for you, that would have been unbearable to watch.

I also feel lost, I was visiting everyday and as I don't have a job at the moment the days seem long and empty. I try to go for a long walk at the time of day I would have been seing her. I also go to visit her grave every other day. I suppose we will get used to this new way of life in time.

I do hope with time the pain will ease for you and your family. 10 years is a long time to care for someone with Demetia.

I just think to myself that her passing was for the best, she would have hated to live the way she was.

Sending you all my very best. Rachel xxx

 

[ringo]

Hi Deb,

Sorry to hear of your mums passing, especially in this way. It is quite common from what I have been told from other peoples experiences of dementia apparently it isnt the dementia that finally takes a sufferer it is the complications from it, like renal failure, chest infections, pneumonia the body just shuts down. Keeping hydrated is especially difficult especially when the gag reflexes go.

You need to give yourself time its all part of the grieving process it is all still so raw. I know it is of no comfort but she wasn't probably aware of what was happening to her.

 

[sleepless]

Hello, Deb.
I am so sorry about your mum, and I can understand how you are feeling. I do hope that in time your pain will lessen and you will find peace, and comfort from knowing there will be no more illness for her to bear.
I wish my mum had just slipped away in her sleep, but there were complications, and she died from those, we were not expecting her to die, and no family were there, just two nurses. It is difficult to come to terms with, but it is very true that time heals -- I now think of her as she was in happier times, and am comforted. I wish you the same, and I'm sure it will be so, in time. Meanwhile let yourself grieve, but try to look forward too.
kindest regards,
sleepless

 

[traceysean]

Hi Deb

Im sorry to hear of your mum passing, my mum died in August last year, very similar to the way your mum passed, my mum had stopped eating and drinking for a number of months leading up to her death, she also had a UTI, my mum passing has left a massive hole in my life, I saw mum everyday all of my life (im 37), she was in a care home for the last year of her life, seeing your loved one's waste away with this illness is heartbreaking isnt it, the night before my mum died i visited her and was "making " her drink her drink and trying to get her to eat, I was getting quite frustrated with her not eating or drinking and it still haunts me that last night with her, she looked so lost, so confused, so scared and there was me making her drink something she didnt want to drink , will never forget how she was, i have only just found this forum so will be looking and offering support to help me through this pain. Its lovely to read about others who understand xxxxxxxxxxxx

 

[together]

Hi, So sorry to hear about your Mum, it's a cruel cruel disease I know. Mum passed away last week in a nursing home of an UTI suddenly, also not eating or drinking for the last 3 days, funeral yesterday , what sadness. Have just managed to add an album to my profile with a few photos, some memories are there forever, just wanted to share. Thinking of you Love Katherine xx

 

[turbo]

Hello Deb, I am sorry to hear your sad news about your mum.


Turbo

 

[Pads71]

I'm sorry you have loss your mum in this way.

My mum passed away 29th December, aged 60 she too refused to eat and drink, christmas eve she didn't look right but still up and about, Boxing Day doctor called and we put her into her bed. She had a living will (thank god) which meant she didn't want any medical intervention or go to hospital and family and care staff could not get her to eat or drink and she passed away four day later in a semi coma.

by reading the threads it seems quite common, we didn't expect to lose her and it's like you grieve for them twice once when they are not the person you knew and then when they actually pass away.

Thougths are with you. xx

 

[Christian159]

I share a similar story. My mum suffered a massive stroke while she was in a so call "care home". To this day we aren't sure what exactly happened nor do we think that it was preventable. She was rushed to hospital and spent the next 4 moths there. She managed to regain consciousness but were still very poorly but while at the hospital she also contracted MRSA and had bed sores. They discharged my mum and moved her into a new care home in february 2010. But they never really told us that she is still quite poorly though theres nothing more they can do to improve her condition.

Some day she looks like she is getting better and some day she doesn't. The new care home seems to be a much better place with regular checks carried out and fluid/food intake recorded. But sadly my mum never really got any better and she passed away at the home on good friday 2010. Till this day Im not sure if we did the right thing in sending her to that first care home. Superficially it looks ok but I think they did contribute in some way to my mum being so ill. We spoke to a nurse who was working at the ward and she asked which home she was at and when we told her she said that she used to work there but it was such a bad care home she left after 2 months. Even the ambulance driver who took my mum to the new care home knew it was a bad place as they have to constantly attend emergency there. We keep thinking would she have lived much longer if she went to a better care home in the first place.


Its almost a year now since my mum have passed away. We all miss her very much even though it was such a painful and difficult times for us all. It has left a huge hole in our lives but at least she is no longer in pain.

 

[Youngest54]

Hello Deb - I'm sorry to hear about your Mum - I lost my mum a month ago and am still feeling just like you in fact I posted on this forum whether I was normal - glad to know that I'm not alone and loads of others feel just like us.

Like you I was always visiting my mum and I used to hate going to visit her in her "care home" I can't begin to tell you the rows I have had with them over the years but now I miss the visits! I thought when my Mum died I would feel a sort of relief that she wasn't in the "care home" anymore that she was in a better place but I don't I just miss her. A fellow user posted to me that I am missing the mum that I grew up with before the awful illness took her and that made sense to me. I hope you start to feel better soon - Take care of yourself

 

[DeborahBlythe]

Dear Deb, I'm just posting to send you condolences on the loss of your mother and to say that I understand why you now feel that there is a huge hole in your life.

You gave so much to your mother over the last ten years. I hope you manage to rebuild your life and to find comfort in positive memories of your mother.

Without wanting to sound like a commercial, you owe it to yourself to find a new life, as I am sure your mother would have wanted you to do.

I am sorry that this message is so belated, but hopefully, if you see it, you will still know that you are thought about and wished well.
Kind regards

 

[kerrykettle]

sorry

hi Deb, im so very sorry to hear about your mom, it is a very devastating illness to have to watch a loved one go through, i also lost my mom to dementia she was very young passing away at 42, i cared for her every day an when she finally left me, i was devastated turning my whole world upside down, i felt lonely, angry, losing my best friend, WHY ME? but all i can say to you is keep her memories close in your heart, it gets easier to deal with in time, but theres not a day that goes by when i dont think of her. we then found out that it was genetic, me and one of my brothers had the test an was told we was both carrying the gene, my brother now at 37 is in a care home dying of this terrible disease, it has devastated me all over again, we were so close, i am now waiting on results to see if there is any shrinkage to my brain, my partner is devastated by it, i tryed pushing him away time and time again as i know how hard it is, but he is absolutely a one in a million, couldnt ask for a better man, sorry this is late but only found the website yesterday, hope things get better for you over time, but dont hold it all in let yourself grieve, thinking of you, take care xxx

 

[lynda ford]

your story sounds so familiar

I have just read your story about your Mum. This is exactly what happened to my Mum, who I adored. My Brother and I cared for my Mum at home for 8 years, after diagnosis with vascular alzheimers, in which I gave up my career as a business manager within the pharmaceutical industry. Mum had a fall in the lounge of her house, broke two small bones in her back,Mum went from being very mobile to being unable to walk. We were devastated at the loss of Mum being taken in to a clinical setting, where things went from bad to worse, from falls off the loo UTI's to being so sleepy we were unable to wake her when we visited. I have three Brothers and I am the only Daughter, I felt that I was losing Mum so rapidly, her disease was at stage 4. Mum was in Hospital for 14 months, when her condition deteriorated to her being bedridden, then yes, you have guessed it, unable to feed, drink etc., the pain of the family being called to administer a morphine pump was unbearable, that was on the Monday, we lost Mum on the Thursday, 6th March 2008. The pain is still with us, Mum meant so much to us, as our Father died when I was 4 years old, as I am the youngest, Mum dedicated her life to her four children, the least we could do was give her the love help and support she deserved. Love you always Mum. Please believe that you know that you did all you could for your Mother, as this is a very cruel disease to watch someone you love slip away from you. I am now working as a private Nurse caring for a Lady with 7th stage Alzheimers, and every day is tough, very tough...As all I want is my Mum back to give her the love that I am giving to someone else's Mother.Very sad......

 

[tania]

my lovely mum

My mum died 24th march she had this cruel illness vascular dementia for the last three years not as bad as the doctors said in fact in the last three months of her life she was quite clear she started going down hill in november not eating and drinking she went into hospital end nov came out 20th dec went back in xmas day they said he had dysphagia that she had to have her watered thickened it was like wallpaper paste her food had to be pureed it was dreadful stuff the doctors in dec thought she would only have a few days suggested that she should go in a home ,mum had always lived with me and my husband so she came home and was bedridden still speaking right up until the last few days I loved my mum so much and miss her everyday she was so strong to have lasted right up until end of march in the last five days she did not eat or drink anything my heart was breaking seeing her like this mum never talked about death even at the end she said dont let me die and I promised her I would not let her go anywhere I cannot bear the thought of not seeing her again . I personally think that she was on so much different medication for the dementia as she went through lots of different stages with this that the combination of drugs made her worse not saying it would be for everyone ,as the last three months nearly all her meds stopped and as I say she was a lot clearer she knew everyone and could still answer her crosswords that she done every day of her life ,if anyone needs any help with different stages of the illness please feel free to ask .
my heart goes out to anyone who is a carer for there parents. One thing I am really troubled about is all the people who are alone with no family and see a carer for half an hour a couple of times a day they do there job and they are off people need to have someone call on them just for some company .
kind regards

Tania

 

[helen6205]

I HAVE LOST IT - sorry, thought Tania's was the first post!!

Tania, so sorry to hear about your Mum, you must miss her immensely. My post is not to undermine your feelings/situation at all, please understand this, as all of us are following the same road.

What I am about to say may sound cruel, but be happy that your Mum was still able to do her crosswords, etc. and was for the main part lucid virtually up to the end. You still had a big part of your "Mum". I mean no disrespect here.

I have been terrified of posting in fear of upsetting people with my thoughts. Mum was diagnosed in 2004 but started symptoms about three years prior to that. She has been bedridden now for eighteen months, has NO quality of life at all. She sleeps 90% in a 24 hour cycle. She weighed 37 kgs in January, is blind in one eye, the other one is not good at all. Pieces of sponge have been placed in her crippled, arthritic hands so that her nails don't puncture her skin. She has already gone through all of the stages that members have been posting, jerks, talking to people who are not there, swearing, hallucinating not eating, drinking, stiffness, bed sores, you name it.

She is in her early eighties now. At the care home, I have been told that she can carry on like this indefinitely but I don't know, for selfish reasons, that I want this, or that Mum would want this. Mum was (I use this in the past tense as she is no longer the Mum I know) such a proud person, a true lady, and to see her like a little bird, breaks our hearts. Dad visits Mum three times a week, he is not well either, and I sit in South Africa with a family of my own. I make trips three times a year never knowing whether it will be the last time I see her again. My last trip in December was an absolute shocker. In the six visits I made to the home, Mum was only partially awake once.

In a way I have made peace with it but I know it will still come as a devastating shock to our family and friends.

I do need to talk, but it is difficult because I am terrified of expressing thoughts out of respect to members just embarking on this dreaded journey.

I had to make a start, and Tania, again, my intention was not to use your situation as a springboard. I will soon be wearing your shoes.

 

[tre]

My mum died on 5 feb 2011. She had a provisional diagnosis of vascular dementia which is all you ever get in this area. Apparently they never give a confirmed diagnosis here. Not that it matters now but I think they had that wrong and my mum had fronto temporal dementia. I only found out about this recently and cannot tell you with what trepidation I clicked on treatments and how oddly relieved I was when it said none.
My mum lost all her language before she died but by the sounds she was able to make you could tell when she was distressed. After Christmas she would not take her tablete. She would pretend to swaalow them and then spit them out onto the floor later. Then she refused food and eventually drink. WE tried everything to tempt her as did the care home but I did wonder in her condition how else was she to say she had suffered enough. She was really distressed if you tried to make her drink and quite aggressive at pushing stuff away, even when she had very little strength left. I do not know if this was right but we had a doctor come to assess her in the care home and he said did we want her to go into hospital to be tube fed. My mum had been to the hospital for non invasive stuff and was terrified so dad and I said no.He asked if we wanted to talk somewhere on our own but I said no . I wanted mum to be there so she had the chance to react if she could. The doctor explained even doing the tube feeding was only likely to give her six months at most and what quality of life. He said she was not in pain- I hope that was true. So for the last week dad and I sat with her, held her hand, played her favourite music, moistened her lips which she allowed and told her how much we loved her. When she died she just lay there peacefully not breathing. I do not know whether I am fooling myself but I do think it was her only way of saying she had suffered enough.
Today is my birthday and I have put flowers on mum mum's memorial as without her there would be no me. This disease is terrible and we can only do our best but at least your mum and mine are not suffering any more.
with love,
Tre

 

[music]

I really miss my lovely Mum

My precious, wonderful, darling Mum died from Alzheimer's on 15th May this year, two days after my 46th birthday. Mum had been bedridden since January this year and then in April she got septacaemia caused by infected bedsores. She had been fighting this cruel, evil disease for eight and a half terrible years, and it was absolutely horrendous watching her desintigrate right in in front of our eyes. Fortunately she had excellent nursing home care so we were very lucky although she had to be moved away from the first one because it was in Catherham and too far away for us to visit. She was moved to a nursing home in Sevenoaks and the care she received was very good, and I was able to visit her regularly and easily, as they were very flexible about visiting hours. I miss her absolutely dreadfully, seven months later; I simply do not know how I will ever get over this devastating loss. So often I wake in the morning after having dreamed about her, crying and wanting to hold her hand, to see her smiling and tell her again how I love her but of course she is gone. To make matters worse, in November we had the reading of her will, and during that meeting, my father calmly announced his plans for his future life without Mum, and told us that he was seeing another woman who he apparently met at the nursing home and plans to move her into the flat which he had shared with my Mum! He has obviously been seeing this woman for some time, long before Mum died, and I see this as a complete utter betrayal of us all. I have now ended my relationship with my father, and I will never speak to him again because of this. His actions have been so cruel, selfish and damaging. My priority now has simply got to be my marriage as this situation has been so difficult for my husband to cope with too. Also I am expected to welcome this new person into my life as a replacement for Mum, and I simply cannot do this. Why the hell should I? Mum deserved so much better than to be treated in such a despicable way by her husband who claimed to love her so much. She gave him so much of herself for 49 years as a devoted wife. As you can see I am still extremely hurt and angry. It is so hard because a fundamental part of being a Christian is having the ability to forgive, but my estranged father is a disgrace, and I have had to walk away. I hope people will understand me and not judge me harshly for the decision I have made. Anyway, life has to go on now, and I am fighting to try to have a positive 2012, and I pray for everyone else here on this forum who is suffering right because of their parent's serious illness, somehow that you will all feel the love, peace and comfort of the Lord Jesus.

Love to everyone here on this forum from Carolynxx

 

[nicoise]

Dear Carolyn,

I'm sorry to hear of your sad loss of your mum, and that not surprisingly you are still grieving for her.

It also sounds as though your dad had probably done his grieving somewhat earlier than you, and has moved on quickly. These differing responses to bereavement and grieving are not unusual and can cause conflict; sadly he seems to have perhaps been somewhat insensitive to your feelings of loss and probably hasn't handled the whole issue of a new relationship very well.

You just need to give yourself time to grieve, and perhaps consider counselling to help you along the path? Everyone is different, it may be that for you concentrating on your relationship with your husband and your faith may be the way for you to heal yourself.

I join you in your thoughts for a more positive 2012, whatever anyone's story may be.

Best wishes

 

[music]

I really miss my lovely Mum

Dear Nicoise, thank you so much for your thoughtful, kind and sensitive response to my post. I do appreciate what you are saying, and I do feel that my estranged father (Malcolm) behaved appallingly, not just to my Mum but also to me and my siblings. For this reason I have permanently cut ties with him. It is sadly best that we lead separate lives. I personally feel that if he had waited a couple of years to start a new relationship after Mum had died that would be bearable, but for him to be seeing another woman when my Mum was fighting for her life is an act of betrayal. Malcolm has clearly broken the wedding vows he made to Mum, and he is behaving as if he could do exactly as he pleased, and surely if he really loved her he would not have strayed. I would have been happy for him to have platonic friendships with women, but he has gone further and all when the rest of us are still grieving. Every time I think of Mum, I now find that I cannot put out of my head what Malcolm has done, I cannot separate the two issues, and this really hurts. I just cannot let go of the anger I feel and I cannot forgive him either.

It really helps me now to be able to talk about my feelings on this forum when I am hurting so badly, it's kind of cathartic to share with others who have lost parents through dementia. I have been bottling the grief up for months! Like I said before I have to look to the future, and a new year will soon start, so my husband and I are trying hard to be brave and find positive things to focus on in order to make 2012 a happier time. We have wonderfully supportive friends in our church, and I am so grateful to them for their love and support. So we are grabbing on to each other, and our faith really tight surrounded by loving friends, and that is what we will continue to do. This is the best way forward. It is so important that we live a happy fulfilled life together for the sake of my Mum to respect and honour her memory.

But thank you Nicoise for your kindness and support, sharing your thoughts with me and advice. I feel comforted to know that there is someone out there who I can talk to during this difficult time, and your support is extremely valuable. Thank you hugely, and I wish you a happy new year.

love from Carolynxxx

 

[Charizomai]

Terrified...

Deb, I think of you and your loss. I believe you will find Peace in time.

I will be honest, I read this thread and I am terrified by the prospects for my mom. I do not fear death - at least not my own. But I do fear the way my mom has to go. I pray for a miracle that will bring her back to me, but know it will be exactly that - a miracle. More likely is that she will also slip away now that she does not want to eat any more...

I am not ready. I have to let her go. As a deeply spiritual person I know she would want to be in Green Pastures soon...