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Not sure how to get through this

Rosalind297

Registered User
Oct 14, 2017
108
0
Mum has been in a care home for 17 months, settled well and enjoyed the social aspect immensely.

8 weeks ago her tummy became very distended and hard due to constipation. The doctor prescribed senna and Laxido to no effect. The district nurse was concerned so it was decided that she should go to A&E for tests which ended up meaning that she was admitted for five days of painful and frightening tests and procedures like enemas because they couldn’t remove the blockage in A&E.

She went in on a Friday, nothing much seemed to happen over the weekend, and we collected her and took her back to the care home on the the Tuesday evening after I had pleaded and begged them to let her go back to specialist care. They had finally decided it was a fecal blockage which could only be dealt with by oral laxatives which could be administered at the home. Why that took five days to determine I don’t know. When we picked her up we could see that she was a completely changed person. She took to her room, stopped eating and drinking and wouldn’t trust anyone. She had just retreated into herself.

Five weeks later here we are at EOL. She is just skin and bones, muscles are all atrophied so she can’t even swallow and is in and out of sleep all of the time. The care home let us visit her in her room and thankfully there is no pressure to leave.

I watched a video they sent us of Mum from early March in which she was singing and dancing and bouncing a ball and can’t believe how this has happened so quickly.

Alas I felt that the stay in hospital had broken her spirit. Two of the carers said yesterday that they felt so guilty for sending her to A&E and that this is the cause of the sudden downturn. I don’t know if any of this is attributable to the stay in hospital in which it was clear from the many phone calls I had with the hospital during that period, that they were treating the physical issue with no real underlying understanding of the dementia aspect. Maybe it would have happened this quickly anyway.

All I can say is that I am devastated at where we find ourselves. She hasn’t had any water for 72 hours so it isn’t sustainable. Having read through this section of the forum I shall continue to talk to her and hold her hand but I am so full of sadness that it is difficult to do without sobbing which isn’t going to help anyone.

Apologies for long and rambling post. I just needed to download.
 
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Duggies-girl

Registered User
Sep 6, 2017
2,496
0
I am so very sorry @Rosalind297 that your mum and you are at this very distressing stage. I agree the hospital stay probably did not help your mum but you still may have ended up where you are now whatever else happened. In my opinion hospital staff are not very understanding of people with dementia and A&E is the last place you want your parent to end up. My dad was sent back to A&E 3 times while in hospital only to be re-admitted at the end of each traumatic day that we spent there.

It does sound like your mum is at EOL but this sometimes takes longer than you expect and it is awful for us to have to watch but holding her hand and talking to her is very important because she may hear you. My dad didn't eat for17 days and he took very little fluid during this time but he eventually died very peacefully with me with him.

I found the physical changes the hardest to watch, dad was skin and bone and in the end I just wanted him to go, you may feel like this and it is perfectly normal to feel this way. Just be kind to yourself because it is an extremely traumatic time for you and you will have emotions all over the place and even though you know how it is going to end it will be a huge shock when it does.

Wishing you strength to get through and peace for your mum.
 

Izzy

Volunteer Moderator
Aug 31, 2003
64,384
0
70
Dundee
I’m so sorry to read your news. Not rambling at all @Rosalind297. I hope that downloading here has helped a little. You know there will always be someone here to listen and support.

Thinking of you and wishing you strength.
 

canary

Registered User
Feb 25, 2014
14,983
0
South coast
Im so sorry to hear that your mum has reached End of Life @Rosalind297
The physical changes can be shocking if you are not expecting them and, as @Duggies-girl said, it can go on a long time. My mum also went 17 days with no food or fluid at all.

When someone dies from dementia the body closes down very slowly over days, weeks, or sometimes even months. The admission to hospital wont have helped your mum one little bit, but I am wondering whether the extreme constipation was, in fact, a symptom of the body starting to close down
 

Hazara8

Registered User
Apr 6, 2015
617
0
Mum has been in a care home for 17 months, settled well and enjoyed the social aspect immensely.

8 weeks ago her tummy became very distended and hard due to constipation. The doctor prescribed senna and Laxido to no effect. The district nurse was concerned so it was decided that she should go to A&E for tests which ended up meaning that she was admitted for five days of painful and frightening tests and procedures like enemas because they couldn’t remove the blockage in A&E.

She went in on a Friday, nothing much seemed to happen over the weekend, and we collected her and took her back to the care home on the the Tuesday evening after I had pleaded and begged them to let her go back to specialise care. They had finally decided it was a fecal blockage which could only be dealt with by oral laxatives which could be administered home. Why that took five days to determine I don’t know. When we picked her up we could see that she was a completely changed person. She took to her room, stopped eating and drinking and wouldn’t trust anyone. She had just retreated into herself.

Five weeks later here we are at EOL. She is just skin and bones, muscles are all atrophied so she can’t even swallow and is in and out of sleep all of the time. The care home let us visit her in her room and thankfully there is no pressure to leave.

I watched a video they sent us of Mum from early March in which she was singing and dancing and bouncing a ball and can’t believe how this has happened so quickly.

Alas I felt that the stay in hospital had broken her spirit. Two of the carers said yesterday that they felt so guilty for sending her to A&E and that this is the cause of the sudden downturn. I don’t know if any of this is attributable to the stay in hospital in which it was clear from the many phone calls I had with the hospital during that period, that they were treating the physical issue with no real underlying understanding of the dementia aspect. Maybe it would have happened this quickly anyway.

All I can say is that I am devastated at where we find ourselves. She hasn’t had any water for 72 hours so it isn’t sustainable. Having read through this section of the forum I shall continue to talk to her and hold her hand but I am so full of sadness that it is difficult to do without sobbing which is I going to help anyone.

Apologies for long and rambling post. I just needed to download.
You have no need to offer apologies whatsoever for outlining your situation, which is unfortunately not unfamiliar
 

Hazara8

Registered User
Apr 6, 2015
617
0
You have no need to offer apologies whatsoever for outlining your situation, which is unfortunately not unfamiliar. Hospital admission and relevant procedures in respect of a patient with dementia can be detrimental. The main problem is that the one living with dementia cannot relate to these necessary procedures as we would normally holding capacity . Anxiety, fear, confusion and so on can exacerbate the already debilitating nature of dementia. When my late mother was admitted to hospital l decided to remain with her in order to enable the least amount of stress when procedures were taking place. I talked to her and held her during these times and it was beneficial. The nursing staff confirmed that my presence helped them considerably with carrying out the procedures. Of course Covid did not exist then and l greatly appreciate how very hard it has been for everyone of late with this interminable disease playing havoc with lives already compromised. When in hospital l witnessed dementia patients who were left alone without the essential ongoing attention which dementia requires simply because nursing and medical staff were preoccupied with priority cases and urgent needs. Sometimes there are dementia or "butterfly" groups active on wards which can certainly help in these matters. It is a very difficult time when dementia reaches a stage which renders the one living with it immobile or subject to various physical ailments brought about by the progress of the disease. Towards the close of her life, l held my mother's hand and simply waited, in fact for one month. Every moment of which was profoundly revealing and shone a very significant light on the nature of dementia and the fundamental meaning of love.
 

Rosalind297

Registered User
Oct 14, 2017
108
0
Thank you to everyone who has replied. I have just come back from a four hour visit. When I got there I really thought that the end was nigh but after an hour she woke up and whilst she can’t really understand anything that is said and answers a very blurry muttered “I hope so” to everything, she said several times that there was nothing to do and things weren’t the same anymore so I suspect that we are going to have a long and painful journey to the end. She has always been so social that I HATE leaving her in her room on her own.

Thank you @Duggies-girl it is good to hear from someone who has been through something similar although I’m very sorry that you have had to go through it. When we were called by the care home on Sunday to say her breathing has changed, you better come in, I naively assumed that she would die that afternoon. I now know that it is likely to be far more drawn out - and am absolutely dreading the next few weeks.

yes @canary I do think we would probably have ended up here without the hospital stay as the constipation and fecal blockage (now gone) was probably due to her systems closing down. I do feel though that the fight in her was diminished by the experience. It’s difficult to know for sure. Thank you for your kind reply.
 

StanRobby

New member
Apr 13, 2021
5
0
I was in a very similar position with my dad. He was at home with me and although he was unwell physically and suffering from severe bouts of confusion over many months, we seemed to be doing ok. For the most part he was comfortable & settled although we did encounter some difficulty on occasion. I was managing to get him upstairs to bed each night and I began to notice he wasn't as restless as usual in bed, sleeping quite normally, often getting up quite late the following day. There was however a change in his food and drink intake which started to become less frequent and I began to get very worried. It got to a point where he didn't want any food and drank very little. We have had some traumatic family problems with CoVid and a doctor insisted that dad was tested. It was a shock to discover when the result came back as positive. I honestly didn't see any change in dad but his food intake became worse than it already was. All the doctors/nurses we then had contact with claimed it was the CoVid destroying his appetite. On the other hand I was convinced his dementia was the real problem. He eventually stopped eating altogether telling me clearly that he didn't want anything to eat. In desperation I called 111 in the hope someone could help us. Dad went into hospital but I was unable to visit. With every phone call the emphasis was always on the agitation/anxiety he was experiencing. He was never like that at home, I always managed to keep him calm. I kept telling them he will be frightened and his dementia will obviously be causing his anxiety. All they kept saying was it's the Covid. I'm no medical professional by any stretch but I was completely of the mind that it really wasn't that at all.
My dad was moved after some days and I could then go to visit him. His appearance was shocking and again he was very agitated with a nurse when I entered the room. I managed to calm him down within a few minutes and he became relaxed. He was always settled when at home with me. I truly don't believe for a second either hospital took his dementia into account. This situation continued for a further week until my dad tragically passed away. I am now heart broken after the loss of a man who I idolised.
 

Duggies-girl

Registered User
Sep 6, 2017
2,496
0
Thank you @Duggies-girl it is good to hear from someone who has been through something similar although I’m very sorry that you have had to go through it. When we were called by the care home on Sunday to say her breathing has changed, you better come in, I naively assumed that she would die that afternoon. I now know that it is likely to be far more drawn out - and am absolutely dreading the next few weeks.
@Rosalind297 We had that very same phone call when dad was in hospital, we went straight there and dad was gasping, I was absolutely sure that he was going to die that night but an hour later he came round and was so agitated that they had to sedate him. The sedation didn't last long and they sedated him a second time which lasted a bit longer. I spent the night sitting by his bed and he only went back to sleep in the morning. He wasn't EOL then but he had pneumonia. He also had a heart attack and a stroke while in hospital and also 3 falls while trying to get out of bed. It was horrendous but he came home and spent another year at home with me with him all the the time.

Your mum sounds like she is further down the line than my dad was at the time but the ups and downs of this disease are awful. Take care of yourself and I hope you have a better day tomorrow.
 

Rosalind297

Registered User
Oct 14, 2017
108
0
I was in a very similar position with my dad. He was at home with me and although he was unwell physically and suffering from severe bouts of confusion over many months, we seemed to be doing ok. For the most part he was comfortable & settled although we did encounter some difficulty on occasion. I was managing to get him upstairs to bed each night and I began to notice he wasn't as restless as usual in bed, sleeping quite normally, often getting up quite late the following day. There was however a change in his food and drink intake which started to become less frequent and I began to get very worried. It got to a point where he didn't want any food and drank very little. We have had some traumatic family problems with CoVid and a doctor insisted that dad was tested. It was a shock to discover when the result came back as positive. I honestly didn't see any change in dad but his food intake became worse than it already was. All the doctors/nurses we then had contact with claimed it was the CoVid destroying his appetite. On the other hand I was convinced his dementia was the real problem. He eventually stopped eating altogether telling me clearly that he didn't want anything to eat. In desperation I called 111 in the hope someone could help us. Dad went into hospital but I was unable to visit. With every phone call the emphasis was always on the agitation/anxiety he was experiencing. He was never like that at home, I always managed to keep him calm. I kept telling them he will be frightened and his dementia will obviously be causing his anxiety. All they kept saying was it's the Covid. I'm no medical professional by any stretch but I was completely of the mind that it really wasn't that at all.
My dad was moved after some days and I could then go to visit him. His appearance was shocking and again he was very agitated with a nurse when I entered the room. I managed to calm him down within a few minutes and he became relaxed. He was always settled when at home with me. I truly don't believe for a second either hospital took his dementia into account. This situation continued for a further week until my dad tragically passed away. I am now heart broken after the loss of a man who I idolised.
Oh @StanRobby I am SO sorry to hear your story.

when it was decided that Mum should go to A&E to be scanned for the type of blockage (it could have been a tumour for example), as no carer could accompany her, it was arranged with the hospital that I could meet her there for safeguarding purposes. We really thought it would be a quick scan and home. I met her off the ambulance and she was cheerful and trusting and, when she saw me, cried out “You look like me, you look like me!” which was her way of saying she recognized me (I look nothing like her, being a dead spit of my Dad - just my luck!). I hadn’t seen her since August. Anyway I won’t recount all that happened that day but things like a cannula being placed in her arm which she kept trying to pull out because it hurt, an enema that had to be stopped because she screamed the place down, an injection given to her in her abdomen to prevent blood clots which hurt her so much that she called the nurse cruel and said bitterly to me “ why didn’t you stop her?” By the time they had decided to admit her at 6pm on Friday and I was asked to leave, she had already begun the process of withdrawal.

I hardly slept or ate for the next five days in the pursuit of getting her out of there and back to her care home, who were desperate to have her back. I kept imagining what she was going through in those five days and was tormented by the emotional trauma she must be experiencing as she needs constant reassurance about everything. The hospital had already said they wouldn’t do any surgery due to her age (94) but they didn’t want to discharge her until she had cleared the blockage. I was constantly on the phone speaking to nurses who knew nothing really but could tell me that the blockage hadn’t been cleared. By the Monday afternoon I was considering discharging her myself but eventually managed to speak to a doctor on the phone to calmly explain to her the need for specialist care. This seemed to do the trick but she still wasn’t finally discharged until 6pm on the Tuesday. The damage had been done.

So we are where we are. It might have reached here anyway but I can’t help thinking what might have been if she had gone home with the high dosage senna on the Friday rather than the Tuesday. I can’t help thinking about the things they did to treat the blockage which, to her, would have seemed like unnecessary and deliberate cruelty. I think about the jolly lady who I met off the ambulance and the decrepit, tortured person I see now.

So I do understand how you feel @StanRobby. For me it is more frustration and anger that her dementia was not considered during the whole ordeal in the hospital and a constant “what if ...“ scenario playing in my head.

We are at the beginning of the end and don’t know how long Mum has to suffer this bewildering thing happening to her (she asked me yesterday “am I better?” which of course she will never be) and how long we have to watch it.

For what it’s worth, I send you my commiserations on the loss of your dear dad and hope that you can find some way to come to terms with the way it happened. There are far more experienced and eloquent people on this forum and “out there” than I and I hope that you can find someone to talk it all out with until you find some peace.
 

StanRobby

New member
Apr 13, 2021
5
0
Rosalind, it saddens me enormously to hear what your dear mum has had to endure. She must have been terrified. Although I'm not trying to point a finger, I have to say again that my dad's extreme agitation was never present when he was at home with me. I spent hours trying to calm his confusion which led him off in all sorts of directions. It was very difficult but we always arrived at a satisfactory conclusion without dad experiencing any high degree of stress or discomfort.
He had to wear a catheter full time following an operation18 months ago. The only occasions where he may have been extremely anxious was during the last two periods of having a blocked catheter replaced. Blocking was a constant problem for dad, having to get his catheter changed on average every 3 weeks or so.
I know he was terrified of going to hospital but I just didn't know what else to do. Towards the end I was even getting a little angry as I felt like I was failing my dad. I even believe I over did the encouragement and coaxing without realising how poorly he truly was.
It is so difficult to come to terms with his loss and I know this is going to be a very long haul before I can return to any kind of normality.
I really feel for you and your mum's situation. I really don't have anything to say that could be of any help other than to send you my very best wishes.
 

Suze99

Registered User
Nov 8, 2020
36
0
Rosalind I am so very sorry for the awful situation you find yourself in. I can understand how distressed and upset you feel about your dear mum's hospital stay. I've experienced something similar so can appreciate your frustration. Sadly it seems many hospital staff are not geared up to treating dementia sufferers or indeed the elderly in general.
I hope your mum's passing comes quickly and peacefully. Please be kind to yourself. You couldn't have done more. Take care xx
 

Rosalind297

Registered User
Oct 14, 2017
108
0
My beloved mother passed away at 8.15 am on Monday. I was with her and had been for the four previous days even though she had a cocktail of morphine and sedative through a syringe driver on all four and a half days I was there so I doubt very much if she had any sense that I was with her. I know that hearing is the last sense to go but, as well as the morphine element, she was very deaf and obviously had advanced dementia, so whilst I talked to her often, I doubt whether she heard me.

Morphine makes the person shake when it enters the body so she often looked like she was having a fit. It also keeps the eyes open which was extremely disconcerting and she could only gasp for breath through an open moth causing the throat to be red-raw and ulcerated for her final few days. I saw her die and was told that it was peaceful even though it didn’t look like that to me.

She died exactly a month to the day that she was pointlessly admitted to hospital, a date that will go down in infamy in my heart forever. I believe that she had most likely begun the final stage of her life at that point, had we but known it, but the process was hastened by the experience.

One of these days I hope to be able to move past that final month and remember the better times, of which there were many. There is no feeling of relief for me just crushing sadness. My thoughts go out to everyone who continue to be living with this dreadful disease.
 

Sarasa

Volunteer Host
Apr 13, 2018
2,887
0
I'm so sorry to her of your loss @Rosalind297 and that your mother's last month was such a tough one. It was good that you were able to be with her, and I'm sure that she sensed your presence.
Be kind to yourself now.
 

lemonbalm

Registered User
May 21, 2018
1,409
0
I'm so sorry to read your sad story @Rosalind297 . I hope you can find some comfort knowing that there will be many of us here thinking of you and sending you the strength to recover from the last few weeks.
 

Snuffette

Registered User
Jan 11, 2021
25
0
With many condolences - take time now to remember the good times you had with your mum.