not been here for a while

[vdg]

Hello, I haven't been here for a while.My Mum is still in the care home and has been there over a year now. She keeps telling me she wants to die. It's a lovely home and she has no complaints with it, only with her state of health both mental and physical. Some days she seems ok, i.e.happyish, those are the days when the dementia is worse.Other days she is sad and wishes to die and asks what she did that was so awful that she should have to suffer in this way. She hates the indignity of soiling herself, hates being always in pain in spite of the medications, hates feeling tired and low all the time.
I am coming to the point where I dread visiting her as I don't know what to do or say. I still go twice a week and try to take her out on one of those days.She likes to go for a drive sometimes.
Food has become an issue too, she eats very little.If it wasn't for the fortisips she'd fade away but she doesn't like drinking them. She says nothing tastes nice and she isn't hungry anyway.The staff are very good with her but she gets fed up with being encouraged to eat and drink when she doesn't feel the need to.
I have no idea what meds she is on now or where she is at in the dementia stages.I lost track when she went into care.It has taken me a long while to relinquish those things having spent so long in charge of them.
Sorry if this seems like an incoherent ramble-it probably is, but I just needed to talk to people who have similar feelings and experiences or at least understand what my Mum is suffering.My lovely husband tries hard to be supportive but he doesn't understand really.
Viv

 

[Jo1958]

Viv, hi
My heart goes out to you, I am so sorry that your mum is suffering so much and therefore so are you.
Enjoy the better days and I hope visiting becomes easier soon.
Take care of yourself and keep in touch.
Kind regards, Jo

 

[Libby]

Hi Viv

I've had days like that with my mum, and it's so heartbreaking to hear them say that they just want to die.

Mum doesn't say much of anything these days though, and when she does say something, it doesn't make any sense - we just recognize the odd words, just all mixed up.

Do you not have someone to visit with, we tend to go in two's now, so at least there's some conversation, and occassionally, mum will join in with the laughter.

Take care

Liz

 

[vdg]

thank you for understanding and for your kind words.
Kassy it sounds like you did everything you could so please don't feel bad.

There is no one else I could visit with as my husband works long hours.He does come sometimes at a week end though, but he is very uncomfortable with her and she senses it I think.She used to get a visitor from her church but I think she has stopped now as it was so difficult for her to understand Mum and Mum didn't really know who she was any more.

I know what you mean about the "conversation".My Mum frequently makes no sense at all ,it's got worse in the past few months.

Today I heard that one of Mum's friends has died. I have decided not to tell her. It feels wrong, but I know she won't remember the lady and then she'll just get upset from trying to grasp who it was and knowing someone she should feel for has gone yet she cannot know who.I hate this wretched disease and what it does to people

 

[Willowgill]

Hi Viv

Its awful to hear them saying they wished they were gone. My dad used to say it all the time in the last year but as his 'catch phrase' for the last 10 years had been 'if I'm still here' to anything we planned I would make light of it and he used to laugh (he laughed all the time). Sadly he got his wish 4 weeks ago when he passed away after not eating for several weeks. I realised that over the last couple of years both he and my mum's tastes changed - they never ate much chocolate or sweets but gradually started to eat them all the time. At the end chocolate puddings were about the only thing we could get into him and then even that disappeared. I think the only thing you can do is try to change the subject when your mum says she wants to die - perhaps have photos handy in an album to distract her. My mum has also been in a care home for a year and some days are worse than others but as she is unable to talk and is totally deaf she can't communicate how she feels. I also think it's probably wiser not to tell your mum about her friend - we haven't told Mum about Dad - she's never asked and would just get distressed then forget. It seems disloyal but the kindest option.
Gill

 

[lin1]

Hi.
it must be awful for you.
am wondering if your mums taste has changed
you know, from savory to sweet, and thats
why she saying things dont taste nice.

my mums taste did change, she ended up having
dinners with lots of tomato ketchup and lots of
sweet things to eat at other times

 

[vdg]

Hi Lin 1,Yes Mum's tastes have changed a lot. She used to love chocolate but now never eats it.All the stuff she was given a while back is still stored in her drawer "just in case" but I don't know what it's in case of!lol!

Things she would never eat such as pasta, liver and mushrooms she now will eat without question. The home asked for likes and dislikes when she went in but the list I gave them is now irrelevant .Even things like tea and coffee where she had strong tea no sugar and milky coffee lots of sugar , have now changed totally! all very confusing when we go out to a cafe[not often though:-(] as I never know what to get!

Gill,thank you for the reassurance re not telling her about her friend.The photos are a good idea, I'll make up an album for her.

 

[piedwarbler]

Hi VDG

I know how you feel, I could have written some of what you put myself. My mum asked constantly to die for a number of years, strangely she has stopped in the last couple of months. She too hates the indignity of having to use a pad, she has been on the phone several times today not sure if she needs the loo or not, then she went and then phoned me back because she could not go. She was very distressed, it is hard to deal with, if I go over to the home there is little I can do to relieve her distress. She is getting worse all the time but by inches.

So I do understand your sadness and frustration, my mum also says all her food tastes disgusting, nothing is ever right, she has one carer she loves and one she detests, and I find it hard to manage her upset when the carer she hates is on. Do I move her somewhere else? Would things ever be right? I plague myself feeling guilty about it.

I cope some days better than others and on the bad days TP is always here with a friendly arm and a shoulder to lean on, so if I can do the same for you I gladly will. You are understood here and I am sending you a hug (((VDG))) - your initials must be an anagram of "very good daughter" !

x pied x

 

[vdg]

hi piedwarbler[ love your name!]
Mum isn't too bad when she remembers to wear a pad, and the home check regularly to see she has one on, but she often messes herself and takes it off then forgets to put a fresh one in so I often go in and find her trying to deal with mess on her own.The carers have about 40 to look after and many are far worse than Mum so I understand fully that they can't watch her all the time-and anyway she is good at being elusive when she wants to.The other day she was in a state in her room and hadn't told anyone so I told her to take her pants off while I got some clean ones and she promptly took everything off! She couldn't remember which was pants so she thought she'd play safe and have all off so that one thing was right! such is her "logic"!

My Mum is deteriorating gradually too. My husband visits less than I do as he works long hours and has been shocked by the changes he sees each time whereas for me it is a more gradual thing.
I look after my grandsons two days a week ,they are 3 and 1. I am watching Mum lose the skills as they gain them and it is awful to watch.At the moment on her bad days I can have a better conversation with the three year old than I can with her.I wonder how long til she is like the little one

Sometimes I think this can't go on much longer ,then I read about AZ and dementia and my heart sinks when I see that maybe it could be years. I don't know why she is still alive as she has severe COPD and late stage kidney failure too, yet still she survives when she really doesn't want to.

The other day she asked me what had she done in her life that was so wicked she should be punished in this way[ she was having a "good" thinking and talking day-they are worse sometimes I think] I didn't know what to reply.
Thank you for the hugs, very much appreciated