Is this the beginning of the end

[catbells]

I posted a few days ago, Mum declining. She has cardio-vascular mixed dementia. The last few days refused lunch, sleeps in chair a lot when I`m there, just holding each others hand. Ankles swollen. Seems very distance when looking at me, effort to talk. Still mobile, but only just holding on to me or carers. Its been a marked decline over the last last. Heartbroken of course, but been stronger yesterday and today. Stress if getting to me, cystitis (had this off and on for a year to two). Sarted again this morning - why - I`m dreading THAT phone call and I subconsciously expect this call anyday now. Not sure why carers not hinting and telling me to prepare myself. I`m not wishing my Mum`s life away, but can`t help wondering WHEN - trying to prepare myself. I know you can`t prepare for the finality but I`m only human. There might be a few years ot this to go yet, but with blockages in the heart stopping the ozygen getting to the brain, I feel it won`t be that long. Just needed to share this. My lovely husabnd is so good and listens to the daily update when I return hom, but I`m trying not to overkill him with my thoughts too. Son and Grandson too. All very supportive, but I can`t poor it all out to them.
So, I`ve stocked up on cystitis powders and have a fridge full of cranberry juice, here at my home and at Mum`s too.
Stop the world I want to off!!!
Heather x

 

[Jo1958]

Heather, hi
Oh dear cystitis is so awful and having it continuously is terrible, my heart goes out to you as if this is added to all your worry you can't be getting any rest. Keep drinking, I remember having it at college and we only had outside toilets, it was winter and the toilets kept freezing, I certainly melted a lot of ice that winter!

I hope that you can talk to one of your mum's carers and let them know how worried you are and make sure that they are sharing all the information possible, if you know that you are being kept informed then it might take away a bit of your stress, I do hope so.

Take good care of yourself, with best wishes from Jo

 

[creativesarah]

lots of support sarah so glad we've got TP

 

[florence43]

Hi Heather,

I can very much relate to how you're feeling. I wondered the same this morning about the carers at mum's NH. I was concerned about her cough, and when I asked a carer, I was told it had started yesterday. Her little feet are in protective booties, and my common sense tells me why, but it's another change.

Mum is in the final stages, but that "end stage" is just a phonecall away. This stage has been ongoing, certainly for 6 months, possibly a year, but I know it differs from person to person. But the carers don't seem worried. Is it because they don't know the phases in dementia? I do suspect so, because they are amazing at caring, and mum is looked after so well, but they're not experts in dementia. In fact, one of them who is from Romania, told me that in his country, dementia is not as prominent as it seems in the UK. Don't know much about that, but from a nursing point of view (he is the senior nurse, and wonderful in his care for my mum), he had not had much practical experience of it. I do, however, trust and know that he and his team are on top of any change in mum.

But the day to day carers wouldn't necessarily spot the signs. They feed, wash and give great care, but is this why she didn't look concerned, or am I just on high alert...like you?

That phone rings and you wonder, as you walk towards it, whether it's the call you're dreading. Then it's just a tele-marketer.

I know how you feel, and it's tough, isn't it? xxxxx

 

[cragmaid]

Heather, you are not wishing your mother's life away, just her suffering. It is unfortunately a sad fact that the two are irrevocably mixed. In a way it is a reflection of the good care we get and give these days,which causes us to live a lot longer than we would have lived otherwise. We have pills and potions for almost every ailment, to treat or heal or cure. But there is one ailment we cannot cure, there is no pill or potion to beat time. All we can hope to do is to make that passing as comfortable, pain free and fear free as we can. It will come to us all eventually, and God Willing, there will be someone to care for us as you and Annie too, care for your Mothers.
As they say in church...Peace be with you.x.x.

 

[shauna]

Hi Heather

I too can relate to how your feeling
My mum is in final stages of dementia
I expect to get that dreaded phone call soon
Isn't life hard trying to deal with so much heartache

Sendings you hugs

 

[thatwoman]

Hi Heather,

I'm in the same boat too. Dad had a stroke 3 weeks ago and went into a coma. The nursing home and GP put him on the Liverpool Care Pathway (LCP), which is a plan for end of life care. Against all the odds, he came back from that and was taken off the LCP again after 24 hours. He has had a number of mini strokes since then, and I believe it will not be long. My GP said that he could not have believed that Dad would still be alive now, so it's obviously not an exact science. Once the home felt that Dad would not recover, they told me I should think about phoning other family members, and they set up extra chairs in Dad's room and brought us flasks of tea and coffee and trays of sandwiches. They really were very understanding, and the way they treated Dad was wonderful. We felt so grateful that when he came out of the coma, all the staff on both floors came to see him, and they shared our joy. I've been told at least 4 times in the past 18 months that he wouldn't survive the night, and it does leave you in a state of high alert all the time. In the home, they call him Harry Houdini because of the number of times he has cheated death! He had another mini stroke yesterday and was very hard to rouse, so we don't think it will be long now, though with his record, nobody is willing to say.

Could you speak to your Mum's doctor and see what they think? My GP was able to reassure me before Christmas that he didn't see any reason for us to think he was dying. He also said he couldn't ever rule out a stroke or heart attack coming suddenly, but that it would be the same for anyone of Dad's age. I hope you've seen your GP about the cystitis. My daughter kept getting it for over a year, and it turned out to be a symptom of a blockage in her kidney. She had to have an operation to remove it, but has been well ever since, and says she would never want to return to that misery. You need to look after yourself because this is a very difficult time, physically and emotionally for us as carers.

Sending you love and hugs,

Sue xxx

 

[kasglass]

I know how you all feel we have been told many times to be prepared to loose mum she has vd, diabeties and has survived both hospital bugs,we await daily for the phone call and have been for the last five years. i know when that call comes it will be a shock to us but it will end my lovely mums suffering. Big Hugs to ever one in this horrible position

 

[catbells]

Thank you

Thank you all for responding, It is comforting to receive so many replies sent with warmth and empathy. Mum brighter today but I`m feeling very uneasy about her tonight. Not sure if Iam being paranoid or what.
Interesting that some of you have been "on call" for some time, expecting THAT call anytime. Maybe this will happen to me also. I suppose it becomes a way of life. But it underlines the importance of spending as much time with our loved ones even though they may not be aware of us.
Cystitis - no its definitely stress. I experienced this last year before I had the courage to pick up the phone to social services. Within 5 mins of visiting Mum the cystitis started chronically, then about 1 hr after leaving her the symptons disappeared completly. This happened quite a lot within a 2 week period. Doctor agreed this was stress advised to keep taking powders, drink plenty and seek help with Mum. Once I had made the awful phone call to social services, the episode left me. The same chronic cystitis started yesterday. Stress manifests itself in many different ways, hitting the weak areas and guess what - yes I pulled out the short straw with this uncomfortable condition.
Thank you all. God bless
Big thank you hugs from me to you.
Take care of yourselves
Heather x

 

[cragmaid]

Cranberry juice for the waterworks, I make Mum drink it whenever I can. Stress does that, with me it tends to be tonsillitis, I guess it lowers the old immune system. Bah
I don't think you are being paranoid, I think we do have a subconcious awareness about subtle changes in breathing or conciousness levels.
It's the one true certainty of life that one day it ceases.
Peace be with you tonight, Maureen.x.

 

[catbells]

Update on Mum

Hi everyone. Not been on TP for a while so absorbed with Mum. Mum continues to decline. Her ankles and legs not so swollen now but has blood blotches under the skin of her calves, carers think it may be because skin stretching. I`m not convinced but I don`t want to bother the doctor. She doesn`t seem to be in pain and there are no blisters or open wounds. She is still just about mobile but very quiet. Not so smiley. Today very pale and her skin icy cold.
Feeling sad today and worn out, so tense, waiting and expecting the phone call.
I`m trying to relax as this could go on for some time yet, but can`t seem to "chill out" from the moment I wake until I drop off to sleep she is uppermost in my thoughts and I get jittery about 9am in the morning,lunch time and when I visit. How can I deal with this?
Heather x

 

[Libby]

Hi Catbells

I know exactly how you feel - mum has been slowly declining for well over a year now and on Sunday, when her drink went down the wrong way she started coughing and choking - well .... my stomach just started churning.

There have been many times, when I've thought ... this is it, she's never been like this before... but she seems to pull herself round and become a bit cheerier. I've just tried to accept, that it's going to happen some day, but to steer away from thinking too deeply about it. It's hard though.

Take care

Libs

 

[sistermillicent]

What works for feeling jittery varies from one person to another. For me, I can't stop it completely but I can make it better - I make a cup of tea, suppose it should be herbal but I don't like that stuff. I sit down and warm my hands on the tea cup and just do nothing for a while. I focus on what really needs doing which is generally very little, and try to get that done over the course of the day. Treat yourself very kindly as if you were unwell, don't expect a lot of yourself.

Remember that TP is here, there are loads of people on here who understand what you are going through.

with love Pippa xx

 

[mistyhollows]

Heather I know exactly how you feel. Mum rang not long ago and told me dad was refusing foods today and they are looking at the magnolia room (where the residents get placed once the morpheine drip is in). I don't know if I can ever look at those flowers the same again. I felt last Friday that I needed to visit him and then this week I have a chest infection so haven't been able to go up since Monday. Somehow, you know.

 

[catbells]

Thank you

Thank you so much for your lovely comforting messages. This rollercoaster ride is odd. Some days heartbroken, then I feel strong and calm, happier, then BANG another decline another heartache. On Mum`s bad days - I think, this is it , then she has a few good days - what I am thinking? I look after myself with monthly body/indian head massages and reflexology and I swear these are helping me keep well and cope plus Kalms which I swear by, but the tears still come releasing the pressure. I have the support of my wonderful family who can read my moods and give me space and forgive me when I`m a bit paranoid/sharp. Like most of you I put on this act at work and when I visit her - I`m ok and coping but inside it`s a different story. Heartbroken, crying inside all the time, it`s hard to smile/laugh. Mum has cario vascular mixed dementia. She appears not to be aware what is happening to her and she is not in pain and I draw comfort from this, but it doesn`t help does it.
Thanks for being there for me, no doubt I`ll be to and fro on TP for sometime yet.
Bye for now
Take care. Huge hugs to all of you.
Heather x

 

[Saffie]

Just want to say that I sympathise. All the worry about your mother is enough without the cystitis. I get it often too and always have those sachets handy. Drink masses of cranberry juice too. It's painful and really can get you down.

Good to hear you have Indian Head massages. i've had had various of these, some good some not so but have not had reflexology. Might try it. anything to help relax!!!
I hope you find you are able to do so at this worrying time. All the very best to you.

 

[cragmaid]

Heather, I just popped in to catch up a bit and saw your post and wanted to send you love and hugs...Maureen.x.