Does everyone know what to expect?

[Splashing About]

I feel like my life has existed around the PWD for years. I struggle to remember a time before this disease. Mum has never been formally diagnosed (how do they do this? who does it?) Everyone says she has dementia or Alzheimer’s but there was never a day when someone sat us down and told us what to expect.

She stopped eating 3 weeks ago but has just started again...small things. She’s in hospital following a chest infection. I’m struggling with how I feel about this. Obviously I want her to eat but witnessing her distress, confusion, anger, lack of cooperation with toiletting, inevitable mess and the difficulty in keeping her happy doesn’t make me want to prolong this. If we could make her happy and comfortable at least it would be rewarding spending so much time with her.
I’m an outdoors person and am struggling with the lack of exercise and being cooped up indoors. I feel guilty for wanting a life. I have no idea how much longer this will last for....weeks, months, years? Every option is distressing. I can’t bear the thought of losing her but I can’t bear the thought of many more months in this horrible situation. Not knowing what the future holds makes it hard to prepare yourself mentally.
Sorry...first post and a right old self indulgent whine

 

[canary]

Hello @Splashing About and welcome to DTP

That doesnt sound like a self-indulgent moan - that sounds like the sort of life many of us lead..
Am I right in thinking that you have been caring for all those years without help? If so, I take my hat off to you.

Unfortunately it is impossible to predict the future, and not knowing what sort of dementia you are dealing with makes it doubly so. The way to get a diagnosis is to ask the GP for a referal to the memory clinic and they make a formal diagnosis. However, in order to decide what sort of dementia she has will require a scan and from the sound of it she might not be able to do this. Ultimately, you might not get any firmer diagnosis than you have already. Even if you do find out exactly what sort of dementia she has, this might not get you any further.

Perhaps now is the time to try and get more help? The way to do this is to contact Social Services for a needs assessment for your mum and a separate carers assessment for you. Things you can get are carers to help with personal care, day care to offer her more stimulation (and a break for you), a sitting service to allow you to go out sometimes, respite in a care home, or, ultimately, a move to a care/nursing home. Think about what you might find helpful

It is easy to lose yourself in the caring role. I have found this forum a life-line and I can "talk" to people on here, even if I dont see anyone else during the day in real life.

 

[Rosalind297]

I know exactly how you’re feeling. Mum was diagnosed with vascular dementia 12 years ago following a stroke. 7 years ago I bought a tiny house next to her to help support her, packed up my London flat which still has most of my belongings in it and costs me £6k a year to keep going. 5 years ago I gave up work 7 years before retirement age to care for her properly. Each year that has passed I have thought “this time next year I’ll be back home in the flat”. Each year I’m still here. I do everything for her.

This year, she had an annual blood test to check thyroid etc. My brother and I were called in to see the doctor. Uh oh, this is it, I thought. “Just watch her diet, she is on the edge of type 2 diabetes. Other than that she is strong fit and healthy and could go on another 5 years”. WHAT? She might be able to but I can’t.

Today is my 64th birthday and I want this situation to end. I want to go home to the life I had before I wake up one day with a serious health issue myself. For my brother and I the only option is a care home for her but it will be so difficult. She isn’t angry, nasty or aggressive. She is timid, anxious, frightened of everything, apologetic and visibly shakes at the slightest challenge or fright. She says she isn’t good enough to be my Mum. How does one subject their little old Mum to a situation in which she feels she’s been abandoned presumably because she isn’t good enough? I still feel it’s her happiness or mine and hers trumps mine.

It really sucks doesn’t it? I have no answers but just sending you some strength.

 

[Splashing About]

I know exactly how you’re feeling. Mum was diagnosed with vascular dementia 12 years ago following a stroke. 7 years ago I bought a tiny house next to her to help support her, packed up my London flat which still has most of my belongings in it and costs me £6k a year to keep going. 5 years ago I gave up work 7 years before retirement age to care for her properly. Each year that has passed I have thought “this time next year I’ll be back home in the flat”. Each year I’m still here. I do everything for her.

This year, she had an annual blood test to check thyroid etc. My brother and I were called in to see the doctor. Uh oh, this is it, I thought. “Just watch her diet, she is on the edge of type 2 diabetes. Other than that she is strong fit and healthy and could go on another 5 years”. WHAT? She might be able to but I can’t.

Today is my 64th birthday and I want this situation to end. I want to go home to the life I had before I wake up one day with a serious health issue myself. For my brother and I the only option is a care home for her but it will be so difficult. She isn’t angry, nasty or aggressive. She is timid, anxious, frightened of everything, apologetic and visibly shakes at the slightest challenge or fright. She says she isn’t good enough to be my Mum. How does one subject their little old Mum to a situation in which she feels she’s been abandoned presumably because she isn’t good enough? I still feel it’s her happiness or mine and hers trumps mine.

It really sucks doesn’t it? I have no answers but just sending you some strength.

Yes it does suck. This horrible balance between loving and caring but resenting the loss of your own life. Dementia robs.

 

[Splashing About]

I’m not the main carer no! I work full time and just support my father in the evenings and weekends.

We will never get her to a memory clinic now. She’s hospitalised and next stop is a nursing home. I’ve just left the hospital after helping to change her soaked bedding. She was distressed at being moved around. I did mouth care...blistered lips from lack of fluids. Tried to get her to drink and a sip went in. I can’t see that any minute of her life is pleasurable.

I don’t know how long she is in hospital for, I don’t know when they will move her to a community bed, I don’t know where she will go next, what sort of say we will have in it, in terms of liking it, suitable location, cost to family. I don’t know if she will be alive in a month or another three years. I don’t know if she’ll start eating and drinking properly again. I don’t know how I’ll juggle being at work for 40 hours a week, viewing nursing homes, meeting discharge coordinator, occupational therapists, supporting a grieving dad...or ever stop this ranting self indulgent howl. Its cathartic

 

[Crystaltipsy]

Hey I know how you feel with regards to juggling work and care/research etc. Firstly, if care homes are an option, the hospitalisation should trigger a social services link and if not ask for it. I don't have a lot of time for social but they will tell you what is available in terms of local funding for your parents care needs relative to your parents finances and a quick heads up on the homes in your area. You can look on the cqc website at homes in your area and filter on dementia and cqc rating. But if you see one you like Google it and check other review sites first to build up a full picture. When you find one you like look of, call them but with a list of questions prepared including their position on sedatives. You completely have a say in where she goes. Do your research though so that you know where you would want her to go.

 

[canary]

Hey @Splashing About , Im sorry I misunderstood about your caring role.
I guessed that you probably wouldnt get her to the memory clinic now, but, as I said, Im not sure that you would gain very much from it now anyway.

I did mouth care...blistered lips from lack of fluids. Tried to get her to drink and a sip went in.

TBH, this does sound to me as though she is near the end of her life, although that doesnt necessarily mean that she will pass away imminently. Have you managed to talk to the doctors at the hospital about where they feel she is at? Have they mentioned about "keeping her comfortable" or talked about palliative care?

 

[Fullticket]

Hi Splashing About
I didn't post very often any more as mum died in 2018 but I still read posts. I gave up work, etc etc to care for mum and I too found it all consuming. And the worst thing for me was I didn't know how long it was going to last. I found that the slow deterioration was manageable and the little changes needed to keep things on an even keel became pretty much a routine I adapted to. Mum had always been manipulative and as the dementia progressed I really found that the bad words, the blame she heaped on me and the sulking, temper tantrums and outright rudeness really didn't bother me that much and I dealt with a lot of it with some very, very black humour - it kept me going.
There were repeated and increasing spells when she was in hospital, not eating, not drinking, and slowly mum lost herself. Looking back I think I was going slowly round the bend with the enforced 'staying in,' hardly any social life and a feeling of total stagnation.
Hindsight, which always has 20:20 vision and I can see that I did the best I could and if I did resent it, I don't think I let it show (to her anyway). But it was the not knowing how long it was going to last was the thing that really got to me. In the end it was a quick physical illness and she was gone in two weeks. Could I have coped for much longer? Probably yes, because when it comes down to it, we just do. Nothing of much use to add but you have my sympathy.

 

[Splashing About]

Hey @Splashing About , TBH, this does sound to me as though she is near the end of her life, although that doesnt necessarily mean that she will pass away imminently. Have you managed to talk to the doctors at the hospital about where they feel she is at? Have they mentioned about "keeping her comfortable" or talked about palliative care?

We have only had one talk with Drs and none of those phrases came up. I think we are working with an expectation that once she gets over her infection related delirium she will start to eat again.
It feels traumatic to think that might happen only to return to this situation in a few weeks or months. A sort of water torture …except no water imbibed!

 

[Splashing About]

Looking back I think I was going slowly round the bend with the enforced 'staying in,' hardly any social life and a feeling of total stagnation.
Hindsight, which always has 20:20 vision and I can see that I did the best I could and if I did resent it, I don't think I let it show (to her anyway). But it was the not knowing how long it was going to last was the thing that really got to me. In the end it was a quick physical illness and she was gone in two weeks. Could I have coped for much longer? Probably yes, because when it comes down to it, we just do. Nothing of much use to add but you have my sympathy.

Your post is really helpful It’s nice to know that your emotions are normal and feel validated.

 

[Duggies-girl]

Oh @Splashing About yes I know it's the not knowing how long that is the worst. Dad has cancer too and we expected 6 months but here he is still after 18 months and it goes on. Yes I have had all of those emotions too. Scared and incredibly upset when I thought he was dying and guilty because it hasn't happened. Up and down all the time and in a state of panic half the time and yes mentally going round the bend or at least it feels that way.

I feel like I have been hijacked unwittingly like those poor men who used to get bonked over the head only to wake up on some ship far from shore and forced to work for their passage home and that could take years if they survived the voyage. I have googled it 'shanghaied' but I think there was another word too. I got it 'press ganged'

You are absolutely normal to feel this way,

I still feel it’s her happiness or mine and hers trumps mine. @Rosalind297 Yes I am 63 this week and that says it all. Dad's a sweetie and I don't know if I can do it. At the moment I can't but things may change or then again they may not.

 

[Splashing About]

I’m really glad I posted. It’s stopped the downward spiral I was in.

@Duggies-girl you describe it so well and the permanent state of panic.

I look at friends Facebook pictures taken all over the place. Loads of them seem to be having extended world tours enjoying ‘cafe culture’ and ‘today we travelled down to...’ and wonder if I’m in a parallel universe to them.

 

[Rosalind297]

@Duggies-girl Shanghai-ed is a good analogy. How the hell did we get here? Is there any way back? This isn’t what I wanted. How dare anyone put me in this position? Followed by a sense of hopelessness and a grudging acceptance of this is how it is. The thing is, I had a bit more to do with it. I almost feel that Mum was lost in a maze and I rushed into to find her but after taking various twists and turns, instead of making our escape, we find ourselves right in the middle of this intricate labyrinth with no way out. I wish you well in continuing to do your best for your lovely Dad.

 

[canary]

I look at friends Facebook pictures taken all over the place. Loads of them seem to be having extended world tours enjoying ‘cafe culture’ and ‘today we travelled down to...’ and wonder if I’m in a parallel universe to them.

Oh yes, I know that one.
Reading about what all your friends are doing and the wonderful time they are having really rubs salt into the wounds.
I dont do facebook anymore

 

[Woo2]

Snap, have deleted all social media . I know very well that life is continuing for others, don’t need to see it thank you .

 

[myss]

I’m really glad I posted. It’s stopped the downward spiral I was in.

@Duggies-girl you describe it so well and the permanent state of panic.

I look at friends Facebook pictures taken all over the place. Loads of them seem to be having extended world tours enjoying ‘cafe culture’ and ‘today we travelled down to...’ and wonder if I’m in a parallel universe to them.

Hi @Splashing About Welcome to the forum. I'm glad to see that you're already feeling better after your first post. It definitely wasn't a self-indulgent whine, it's honest and it's real. I have to say that I bet most if not all forum members reading this thread can empathise and/or know that they've felt the same at least one point in their caring role.

I can recall being in the midst of my degree and feeling a bit overwhelmed as I was also working at the same time, fallen ill and a parent but at least there was an end date to it and then I got the degree to go on to other things. Caring can have a similar feeling - but there's no end date, there certainly isn't any deserved pat on the back or reparation for the range of things we never thought we would have to do, and, if your mum is anything like my dad, just when you've sorted out one issue, another new one or a previous old one recurs just to keep you on your toes!

I did all if not most the paperwork for my dad as he got more ill as I'm not the main carer for him and I should be grateful that other are involved as I know of people doing it on their own or with less help, but the sadness of it all is just as heavy as he's just a shell of the dad that I love and grew up with, and know he would hate to be living the way he is now. As you sort-of put it, dementia sucks.

 

[Splashing About]

I had a little meltdown in hospital today. No one seems able to tell us what is the prognosis. She’s still not eating and drinking much. I haven’t seen her eat anything for ages but I know she has had tiny amounts. They say she is strong and capable of enduring this period of not eating and they think she will start again soon...and if she does she’s physically quite fit. Mentally she’s angry, cross, distressed, uncooperative, struggling, not sleeping, crying.

We visited care homes. That’s not great is it. Has anyone ever walked into one and said “Yes! Yes this is the one! She will be so happy here”

I have red wine tonight

 

[canary]

We visited care homes. That’s not great is it. Has anyone ever walked into one and said “Yes! Yes this is the one! She will be so happy here”

No, I dont think anyone does. They take a bit of getting used to. My mum actually was happy in hers and it was the right one for her, but the first time I saw it when I was looking around I mentally crossed it off the list as it was so shabby.

Red wine is good
xx

 

[Duggies-girl]

@Splashing About sitting here with a glass of red myself. I am glad that you are glad you posted on here although it's not a club that we want to join.

You don't say how old your mum is although that doesn't really help with a prognosis. Dad is nearly 90 but his brother lived until he was almost 95 so that doesn't help me much. Dad should be in a home but being as he is such a happy man and still continent (very important) I just can't do it. I suppose I am waiting to be where you are and something will happen to take it out of my hands. He nearly went into a care home after his pneumonia last March but he rallied and came home.

I visited homes and just came away depressed but it sounds like your mum is ready for one, there comes a time when it just becomes too much for family to cope with and there are many on here who have found good care homes. I just think that my dad is not quite ready. Ideally it is best if they can go to a care home straight from hospital .

As for face book I have blocked certain members of family who have umpteen holidays a year and like to post pictures of their fat dinners and fat faces all over the place. Who wants to see that, they are now hidden from me.

Enjoy your glass of red.

 

[kindred]

I had a little meltdown in hospital today. No one seems able to tell us what is the prognosis. She’s still not eating and drinking much. I haven’t seen her eat anything for ages but I know she has had tiny amounts. They say she is strong and capable of enduring this period of not eating and they think she will start again soon...and if she does she’s physically quite fit. Mentally she’s angry, cross, distressed, uncooperative, struggling, not sleeping, crying.

We visited care homes. That’s not great is it. Has anyone ever walked into one and said “Yes! Yes this is the one! She will be so happy here”

I have red wine tonight

Yes,I did. In fact, only the second home I visited,whichwas found for me by the hospital socialworker even though we were self funding. I immediately sensed staff loving care and I was right. My husband, until he got to end of life, was so happy there. It is possible.
All support to you. Kindred.