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So sad

sleepless

Registered User
Feb 19, 2010
3,223
The Sweet North
Heather, You are a good daughter, your mum has lost so much, but she is so fortunate to have you, and I hope that somehow she knows this, even if she can't communicate it.
Sleep well, and God bless you too. x
 

Wendy C

Registered User
Jan 29, 2012
121
West Midlands
It is so sad to learn so many of us are going through this with our loved ones. On Monday I went to see my mom. She actually said a few words. I had to prompt her and kept repeating the words. She said my name, which I found very emotional. She was quite smiley and did manage to stay awake for most of the visit. Came away on a bit of a high. Deep down I know these good days will be rare. Will be going tomorrow and am hoping it will be another good visit. She did stare at me a lot, it was as though she was trying to think who I was. The carers are wonderful and are very good with mom. It's an awful disease and so cruel to watch thr person you love just disappear before your eyes. I love my mom to the moon and back and would miss her so much, but .......... I am sure you know what I am trying to say. Love to all, we are not on our own on here. Xx
 

Wendy C

Registered User
Jan 29, 2012
121
West Midlands
Today's visit was a definite down visit. Mom is full of a cold and has an awful cough. She has conjunctivitis. The doctor has been out and her Chest is clear. I have been asked to buy some bibs for my mom as she is dribbling a lot. That is something I thought I would never have to do for my mom. I tried to get her to blow her nose as she is so bunged up. She could not understand what I was asking of her. Feel just a bit low this afternoon. :(
 

catbells

Registered User
Jun 14, 2010
384
Cambridgeshire
Hi WendyC
"I love (her name) to the moon and back" is something I sing to my Mum several times when I`m visiting. I have a small ornament with the words on it. I have done this for about 6 months now and she would normally smile and look at me recognising her name, but now today I fear might have been last time I sang it to her - today laboured breathing to tired to hold my hand, move her own hands etc. Her worst day so far.
Enjoy your time with your Mum. All too soon there are more bad days than good, hang onto the good days. I will always remember the happy cuddles and kisses, smiles, holding hands we have had even though no words were spoken. We have enjoyed mutual comfort cuddles. Now its just my smile, me holding her hand and stroking her head with just a whimper and a little look at me, hardly able to hold her eyelids open. I assure her she is safe and doing very well, nothing to worry about, just go to sleep and rest.
Heather xxxx
 

Ash148

Registered User
Jan 1, 2014
274
Dublin, Ireland
Wendy, I'm so sorry you're feeling low. Sometimes I describe the dementia journey as a roller coaster, but on reflection there are far more downs than ups along the way. Try to be kind to yourself.
 

Wendy C

Registered User
Jan 29, 2012
121
West Midlands
I have been to see mom today with my two daughters. We got there at lunch time, so I said I would feed mom. She managed her soup quite well, but then her puréed fish dish she had trouble swallowing it. What is sad is my eldest daughter is getting married in June and mom does not know. If she was not ill she would be the most excited lady in the world, in fact she would be organizing us all. We talked to her about it, but that lost look in her eyes, heart breaking. She seems to be losing weight, both my girls commented on it. It's a roller coaster ride as Ash148 says and it is far more downs at the moment than ups. My poor poor mom. Xx
 

Danni

Registered User
Oct 4, 2014
12
Wendy, It seems to me that there is no pattern to end stages. We were told that our mum was in her last days/ weeks back in October as she had not eaten for 5 weeks and was only sipping water. She miraculously rallied round and started to eat puréed food and drink lots of fluids. She is totally immobile, just stays in bed ( nursing home) doubly incontinent and very frail. However she chats incessantly! She still recognises me and says my name when she talks to me, but gets anyone else visiting her mixed up, for example she thinks my granddaughter is my daughter and so on. She talks as if she is a 20 year old. I.e that her mum and dad and sisters came to see her earlier.. ( she's 90). She had a bad chest infection in January and I really thought it was the end, but once again she rallied round. It's so true that this nasty disease is a roller coaster and just when you think they will be at peace at last, the torture continues. I have asked the home questions about her and to be fair to them they don't have the answer. They have told me that her major organs are strong and as long as she continues to eat and drink it could be a very long road.
 

rhapsody

Registered User
Aug 14, 2012
6
Firle near Lewes
Hi Wendy. I worked in an E.M.I. home and can tell you we had a lady in a very similar situation as your mother. In the 2 years i was there her condition didnt change. This lady really surprised me several times. Where she didnt speak,and didnt seem able to understand if spoken to,very occasionally she did say the odd word. Once was when i had taken some perfume in and offered her some after her personal care.She told me 'Yes!!' then gave me a huge smile. She had the richest and most beautiful voice. This happened several times and always when i asked her a question.Her remark was always in context with the question asked. At the end of the day 'love' is all that is needed. Even if you feel they are not understanding, chatting to them ,talking about the past , including them as the person they are, all is not lost. Even though you may feel they are lost ,sometimes you can get through! It is a different stage in their lives,that is all.They are still your 'mother', 'father', 'brother' or 'sister' and you are doing the best you can for them.:)
 

rhapsody

Registered User
Aug 14, 2012
6
Firle near Lewes
Hi Wendy. I worked in an E.M.I. home and can tell you we had a lady in a very similar situation as your mother. In the 2 years i was there her condition didnt change. This lady really surprised me several times. Where she didnt speak,and didnt seem able to understand if spoken to,very occasionally she did say the odd word. Once was when i had taken some perfume in and offered her some after her personal care.She told me 'Yes!!' then gave me a huge smile. She had the richest and most beautiful voice. This happened several times and always when i asked her a question.Her remark was always in context with the question asked. At the end of the day 'love' is all that is needed. Even if you feel they are not understanding, chatting to them ,talking about the past , including them as the person they are, all is not lost. Even though you may feel they are lost ,sometimes you can get through! It is a different stage in their lives,that is all.They are still your 'mother', 'father', 'brother' or 'sister' and you are doing the best you can for them.:)
 

Wendy C

Registered User
Jan 29, 2012
121
West Midlands
.

Hi all, and thank you for all your support and replies.
The home rang me this morning. Moms has oral thrush again. Apparently because mom is not chewing her food, her tongue has become infected. They are getting the speach and language team in to see if they can do anything about her swallowing. They are going to start giving her liquid drinks instead of pureed food as that is the problem. She is losing weight. Also they are thinking of taking her off her medication as they don't think it is having any impact any more. They also said mom has deteriorated in the last few weeks. Trouble is she can't tell us if she in pain, ie her tongue must be sore.
What a horrible position my poor mom is in. Just wish I could get her to speak to me and tell me how she feels. X
 

Ash148

Registered User
Jan 1, 2014
274
Dublin, Ireland
Like Rhapsody says, my mum sometimes manages a yes or no to a specific question and there is an occasional "nonsense" sentence which I always respond to as if it made perfect sense. Perhaps two visits out of three, mum says my name. I treasure this but am always a bit low the days it doesn't happen. I daren't ask my siblings if mum says their names as would feel for them if she doesn't. She doesn't say my dad's name when he visits with me, which he finds very hard, but she said it yesterday when I was there on my own, which I'm looking forward to telling him tomorrow.

Mum has had two "near death" episodes in the last four weeks but bounced back both times. We know she is end stage but have no idea how long we have.
 

Wendy C

Registered User
Jan 29, 2012
121
West Midlands
I hate this bloody disease

Please excuse my language, but not in a good place. Have been to see mom today. She was actually like a vegetable today. No life what so ever. She was in her wheelchair as they had just taken her to the toilet. She can hardly walk now. We wheeled her down to her room where she just either stared at me, quite spooky, with no expression, or shut her eyes and was sort of dreaming. We had no smiles, and did not even hold my hand. I don't even think she knew we were there. This is the worst I have seen mom and it's just horrible. I try to get on with my normal life when I get home, but all I can see is the vacant, lost and troubled look on my poor moms face. Bloody heartbreaking. Xx
 

tryingtosmile

New member
Mar 13, 2018
6
Stages of Alzheimers

Hi Wendy C. I know how horrendous this is for you. I too am experiencing this long goodbye and my mom cud be in your mom's position soon as this wicked disease continues to run its course. My siblings and I had to make the heartrending decision to put our elderly Mom (84) into the Elderly Mentally Infirm (EMI) Unit of a Nursing Care Home in Jan2014 because Alzheimers had ravaged her brain to the extent that she was too vulnerable living alone. (Dad passed away more than 10 years ago). She was doing so many oddities caused by this disease, eg she hadn't a clue about dressing appropriately for the weather, going out in only short sleeves and summer clothes in winter weather, leaving her door open, pushing her breakfast trolley with unfinished breakfast on it heading to the shops, rescued and returned by caring neighbors or her own carers if they happened to be driving past as they did their rounds in the area. Mom had had a care package in place for over 2 years, they called 4 times a day at meal times and some long visits "sits" in between, and we 4 siblings visited as often as possible on a rota basis to fill the gaps of mom's loneliness in between that but even then Mom cud never remember that anyone had been to see her. So the move to a Home was the best and worst thing ever. Best for Mom, worst for us coz it was the ultimate acknowledgement that this illness had progressed so far and there's no stopping it. For weeks we told ourselves it was for respite and she wud get back to her own home soon but of course that was just wishful thinking. It's been over a year now and it really has taken me that time to fully accept how advanced Mom is. She was assessed as being in Stage 5 within the first 6 weeks of moving into the Home and is now in Stage 7, the final stage. Yet each stage covers such a broad spectrum but I'm glad ("glad" is not really the right word for it, "satisfied" perhaps) that I know what to expect, what's ahead for Mom coz she may plod on for months or years, no one knows. The Care Home staff are brilliant and have always answered our questions honestly and know our mom so well. There's so many activities laid on for all residents to take part in no matter what their ability. Chairbound vacant minds take part in singing and tea dances etc too. My mom still walks and talks and knows us vaguely but is so frail and falls more often now. Falls will increase until eventually she will be wheelchair bound coz her brain will stop telling her to get up and walk and collect things. I'm sorry you are in a similar, even worse, predicament as me, your mom is more advanced. From what I've seen of people who are chairbound, vacant looking and unable to communicate, they still respond to the kindness and love of a human touch and tap their feet (if able) to music and singing. It brings tears to my eyes thinking about what's ahead for mom and that we will lose her further. All any one of us can do is visit occasionally and offer that human touch knowing hopefully that those carers offer it as well when we are not there. I really am grateful that there are so many wonderful people in the world who feel drawn into genuinely caring for dementia sufferers and certainly I witness it in the Home my Mom's in which is very reassuring. I visited my mom 3 or 4 times a week for many months when she first went into the Care Home until it got to the stage where it was affecting me so deeply with sadness that I had to reduce my visits and now I visit once a week or even fortnightly. Mom's in a different world, an Alzheimers world, and visiting such a place can be deeply disturbing but it doesn't mean we love our moms less just coz we visit less. I wud say just cherish the special memories you hold about your mom and do ask for advice from your mom's Care Home Manager about how she is and what to expect. So many people can exist in this chairbound vacant state for years. There's one resident in mom's Care Home who turned 100 years old last year and has been chairbound, bedbound and vacant for more than 10 years in the same Home. It has helped me greatly to know and hear about what stage my mom is at in this progressive disease and what to expect along the way. It doesn't remove the grief but lessens it a good bit and enables me to let her go and let me get on with my life, so I do hope all this may help you in some small way as it has helped me so much reading about yours and so many other people's circumstances as we carry on living on the outside of the Alzheimers mind. Thank you for "listening" & sharing.