What are the signs

[clare]

Hi everyone.
I've tried to post this a few times and haven’t because I don’t wish to refresh painful memories in anyone yet I like to know some other peoples experiences.

My mum is now in hospital, after spending the last year in a care home. She has vas dem and I would say is in stage 7. My question is this, how do you know when the end is near? Mum has gone down hill dreadfully in the last month. (Unable to walk, feed herself, incontinent, also has some trouble swallowing.no appitite) She is on a soft diet. She went into hospital with an infection; she has a catheter and is on a drip as she is dehydrated. She just sits in a chair all day.

Sometimes I leave thinking she is going to die soon, and other times that this is just another awful stage she has got to, and it could go on for years.

I would appreciate any of your thoughts.

love claire

 

[nicetotalk]

Hi Claire

So sorry to hear about your mum, have you had a word with her doctor at the hospital,i think you should. Has anyone told you anthing about what is happening with your mum? When my mum was addmited we had to ask all the questions because no would tell us. Its such a difficult time right know ive been there. I dont want to tell you the end is near but i strongly advise as soon as possible to talk to the doctor.

Take care kathy.x

 

[perfectpatience]

Hi Claire. Of all the experiences I read on T/P yours is the most similiar to mine. My mum too has vas dementia....and like your mum ...has gone downhill so much since she went into the c/home in January. She not only has lost alot of weight...but gets infection after infection...then dehydrated...and has been in hospital now 5 times all in all since she went into the care home 9 months ago. I too am so struggling to come to terms with all of this....as last week she had yet another fall...and was leaning over so much in her chair I thought she was going to die last week. She too is incontinent...and finds it hard to swallow...and hates drinking anything (its like we are asking her to take poison)
All I can say to you Claire is things can change as quick as lightening...and you could find she might even pick up again. My mum has picked up this week...she is not 'leaning' over hardly at all...and though its a battle....we are getting fluids in her without resorting to the drip. She also tried to stand up by herself yesterday (she has not walked properly for 7 weeks) but whether thats a good thing because shes more prone to falling....I dont know. Last week I was told my mum might be 'giving up' and I thought this was going to be the end. This week Ive got a bit more hope...but I can honestly say....it most probably will change again...so I wont be too ecstatic....because I get so disappointed. I know how hard it is for you Claire.....I hope sharing with you some of my experiences has helped a little knowing you are not alone with this. God bless you and your mum.....hope we can post some more....a trouble shared...you know the rest. Best of luck Claire. PP x x

 

[rummy]

Hi claire,
My Mom is also is coming to the end of this journey. We asked hospice to elvaluate her and the blood work came back with her prealbumin level at 11 when it should have been over 20. That basically is an indicator that she is not absorbing any nutrition. She is loosing weight even if she does eat or drink which isn't often. They are telling me that her system is beginning to break down, she is very very frail and her skin is showing signs of breakdown, a strong indicator.
I just read yesterday that the dying elderly refusing to eat or drink is very natural. Their organs can't really process the nutrition or fluids so the brain tells the system it doesn't want it. In this process, it also releases endorphins that help them. I have decided to not wart her to eat or drink if she doesn't want to and to just spend as much time with her as I can as it seems we are coming to the end.
I am so sorry that we all have to come to this stage with AD. I can only be ok with it knowing that she will leave this sad disease behind and be whole again.
Take care and just know many of us are there too and know what you are going through.
Debbie
ps, have you contacted hospice?

 

[clare]

Hi Rummy

Thanks for sharing your experience. By skin breaking down do you mean pressure sores (bed sores)????? As for the blood tests I’m just told the bloods show abnormalities.

As for the hospice, I’m not sure what the situation is in England. I was under the impression that they were mainly for cancer sufferers, but maybe not. Maybe someone else has experience of this and can let us know.

Clare

 

[rummy]

Hi Clare,
In my Mom's case, her skin has gotten like parchment paper and is so thin you can almost see the bones underneath. She has no muscle hardly at all left. Her ears are flattening (floppy) which I understand is part of it. Bed sores will result and they have put a blow up cushion on her bed to help prevent them. You might ask for the prealbumin levels on her blood test and if it wasn't performed, ask for it.
Hospice here is for any person with a life expectancy of less than six months. I think cancer is what everyone thinks of because it is pretty predictable. Alzheimer's is more difficult but it is considered a terminal illness and here, they are more lenient in accepting Ad cases. My Mom though wasn't incapacitated enough for them to take her on AD, but they did the blood test and did take her on "failure to thrive".
I hope this helps. I will tell you that Hospice has been wonderful with the extra help from social services to nursing care. I hope your systems is the same.
Take care,
Debbie

 

[noelphobic]

Hi Rummy

Thanks for sharing your experience. By skin breaking down do you mean pressure sores (bed sores)????? As for the blood tests I’m just told the bloods show abnormalities.

As for the hospice, I’m not sure what the situation is in England. I was under the impression that they were mainly for cancer sufferers, but maybe not. Maybe someone else has experience of this and can let us know.

Clare

Hi Clare

From what I understand, the UK meaning of 'hospice' is completely different than the US meaning, and this can cause confusion. In the UK we use the term 'hospice' to mean a place that someone goes to live out their last days, or sometimes for respite, but either way it is an actual building. In the US I believe it refers to the care that someone receives so could possibly be compared to Macmillan nurses visiting the home (although I know they are for cancer patients).

I don't know whether the blood tests that Rummy refers to are routinely carried out in the UK, although I could be wrong and there is no harm in asking.

I subscribe to a US Lewy Body carers email support group and I don't think I have ever actually posted a question or replied to a post as the 2 countries systems are so different that it can get very confusing at times!

 

[Áine]

Hi Clare

Sorry you're going through all this ....... it's such a difficult time. I second what Kathy says, talk to the doctor. My experience is that if you don't ask they assume you don't want to know. So if you DO want to know, ask ........ and when you have an answer and realise there are more questions and you don't understand, ask again ...... and then ask some more if you need to. Make a nuisance of yourself if you need to. You only have one mother ....... make sure you get what you need to help her (and you) through this.

hugs
Áine

 

[perfectpatience]

is this a sign?

Went into care home to visit mum today...and couldn't believe how she was 'breathing' in the chair. She sounded like she had so much congestion on her chest. Yesterday she was a little better I thought...cant believe shes taken this turn for the worse. Anyway an ambulance was called and she was rushed to the hospital....and Ive never see her breathing like this ..ever. I cant help thinking ...is this going to be the end? Her breathing is like a 'rattling noise...she is now on the drip...and has an oxygen mask. There was talk of her 'asperating' I think that is the word...would anyone know what this means.? Something to do with fluid going into the lung. Ive been at the hospital all day...just got home and wanted to post this as I feel so down...(again) I will be going back early in the morning...though I wont sleep tonight. While I was there a consultant came up to ask me if I would agree to 'resusation' if mum was to have a cardiac arrest...but advised me against it as she is very frail and weak at the moment. Would be grateful for some advice. PP x

 

[rummy]

Dear perfectP
I am so sorry. It is very difficult to let them go. We signed a "do not resuscitate" when Mom went into the nursing home. There is no way she would want her life prolonged and we knew this was what she would want. It hasn't happened yet, but when it does, I will let her go. Hold her hand, sing to her, tell her I love her, and I will let her go.
There are things we could do to prolong Mom's life but why? She would be in more pain, become incoherent, and bedridden. I will be at total peace in letting her go.
You have to decide if your are ready for that or not. Is there hope for a meaningfull recovery? Is it what she would want vs. what you would want? I know all of my reasons for keeping Mom here are for me and selfish. I totally admit that and have moments where I would do anything to keep her here but I know it isn't right.
God bless you and help you through this difficult time.
Love, Debbie

 

[perfectpatience]

is this a sign

Hi Debbie. Thankyou for your kind words and advice. Its what I really need right now. I guess I have taken things out of context maybe and thought the 'worst' when the consultant asked me about my decision to 'resusitate' or not....as Ive never been asked that before in the hospital or care home. I keep thinking my mum is not going to pull through this time...I hope Iam wrong...but I hate to see her suffering like this. Take care Debbie...Thankyou...and godbless...PP xx

 

[jenniferpa]

Perfectp
aspiration refers either the removal of a sample of fluid with a needle OR a situation where someone had breathed food or fluid in to the lungs. It's sounds like they think that has happened to your mother.

The problem is that once fluid gets into the lungs, it can be very difficult for a frail person to remove it (e.g. coughing) Also, it makes it much more likely that an infection could set in.

I am so sorry this has happened, and I would like to echo what Rummy said.

Jennifer

 

[perfectpatience]

is this a sign

Yes Jennifer I think you are right about the food being 'breathed ' in the lung. Do you think this might have happened in the care home whilst she was being fed today? I ask this as I know they have been trying desperately to get her to drink and eat. It came on so quickly (after lunch) as well....no sign beforehand whatsoever. Yes Jennifer my mum is so frail now...she is finding it so hard to 'cough' I hope they can make her more comfortable. I might go back to the hospital tonight as Iam so worried. I know there has to be an 'end' but I really didnt want mum to go like this....surely something can be done to relieve this discomfort...which is so awful to watch. Thanks again Jennifer. PP xx

 

[nicetotalk]

Hi Perfectpatience

So sorry to hear about your mum, its such a difficult time i know, when my mum was taken to hospital she was haveing difficulty swollowing they were worried that she would choke. They put her on a drip to and depending how long a person remains on a drip sometimes they can get a build up of fluied in the lungs. Iam not saying this will happen to your mum but i can only go of my experience. In my mums case it did her no good, after antibiotics were given and they did not help we as a family said no more. Its hard i know but in our case it was just prolonging her life. The rattling noise you hear is not distressing her but it is distressing for loved ones to hear. If the doctor asked us did my mum want resuscitating we would of said no it must of been so awful for you to hear that. Speak to the doctor tomorow and ask his personal opinion what he thinks the situation is with your mum.

Take care
kathyx

 

[perfectpatience]

is this a sign

Thanks Kathy. I will find out either tomorrow or if I go back tonight. I really didnt want to leave her earlier...this is probably the worst Ive felt....ever....I just hate watching her suffer. I will post again tomorrow. Goodnight godbless PPxx

 

[Áine]

Thinking about you today PP.
hugs
Áine

 

[jenniferpa]

Dear PP
While it could have happened when she was being fed, it's just as likely that what she has aspirated is saliva. Sometimes the swallowing reflex is impaired, so the saliva buidds up and then gets breathed in. Thinking about both you and Clare today.

Jennifer

 

[Skye]

PP,

Thinking about you. When my mum died (following a stroke) she had similar symptoms. It's awful listening to them battling for every breath. I said 'do not resuscitate' too My mum did not want to survive as an invalid. But it's a hard decision to make.

Love

Hazel

 

[clare]

Hi All

Thanks for your replies. We have had a chat with the consultant and he says mum is nearing the end. Theres no more to be done. her body is shutting down.
I requested that her life was not prelonged any more and he said that the drips would be taken down.
He said it might take several days for the end to come. Now i sit and wait for the phone call. we have been called in twice but she rallied again. I dont know what to do, we could camp out at the hospital but might be there a week and i have a family to consider also. some half term this has turned out to be for my kids.(they understand, just another bit of guilt)

When we saw her last she looked peaceful and im scared that when or if i visited again things might be worse and our last memory of her will be worse.

Am i just a coward?? also have to look after my father he feels the same as me in that mum doesnt know us and we can do no good. My heads all over the place.

Sorry for such a down posting

Love clare

 

[rummy]

Dear Clare,
I am so sorry. I know how difficult this must be for you and I am only a short time behind your experience with my Mom. She is failing weekly and will eventually be bedridden and pass away. They are saying within weeks.
There is a book called "Final Gifts" written by a hospice nurse about end of life experiences she had with her patients. It is so comfortind and inspiring. You might get alot of comfort from reading it, even if it is after the fact.
I have a friend who was present when her father passes away after a long illness. She told me it was the most spiritual experience she ever had as when he passed she felt presence of his soul as it left his body. It brought her great comfort and a feeling that he was in a place that she too will be someday. The end is not the end.
I think it is different for everyone and probably just depends on your beliefs as to whether you are tuned in to that final moment in that way. But I have to believe there is more after this life. That will be the only way I can tell my Mom goodby.
I too hope I can be there but realize I can't be there 24 hours a day. I have just put it in God's hands as it is one of those uncontrollalbe things. I have never seen anyone die before and it might just be too much for me. So if I'm not there, I will view it as much as a blessing as I will if I am.
Take care of yourself and your own family and just do the best you can. Your Mom knows your efforts, and that your love is with her.
Debbie