Watching my lovely mum slowly rotting away is destroying me.

[ArnieandBob]

My poor mum, my best friend is wasting away mentally and physically.

She is 81 but sadly looks so much older. She is bent over with osteoporosis and often in pain, she has glaucoma and cataracts, 6 years in to a Alzheimer's journey (horrible evil disease) and this year was diagnosed with breast cancer which is being treated with medication alone as we agreed with the consultant any other interventions are too much for a dementia patient. She is on lots of medication.

It is so so hard to see her (and my dad) struggling so very much. She is such a great mum, she was always so kind and caring and she was my go-to whenever I needed someone to talk to, we have always been close and always very much alike. Now I can only describe her as my third child, she is very much like a toddler now. The only good thing is she still knows who I am and most days is quite cherry when I am with her.

I go to mum and dad's about 4-5 times a week to help. Yesterday, I took her for her ct scan follow up to check on the bc progress. It was heartbreaking seeing this tiny fail little old lady, my mum, looking so bewildered and frightened whilst the (wonderful and lovely) nurses put her cannula in and all of us trying to explain everything to her knowing full well 5 minutes later she will have forgotten everything and was probably scared although she did so well and never moaned or groaned about anything they had to do to her. I was very proud of her.

But, the stress of it all is taking it's toll on me, I came home and had a terrible tummy later (I have stress induced IBS which has been awful the last 6 years), and felt exhausted. I am 51 and in perimenopuase and have a young adult children still at home and a job looking after a disabled person, my life is all about looking out for other people.

My dh doesn't understand and when I am weeping for my mum he says that it's life and nothing I can do about it. I know that's true but I am a highly sensitive person and an overthinker, he is pragmatic and stoic and when his poor mum passed away 4 years ago from cancer he just got on with things and says thinking about it is a waste of time. We are all different I know but I wish he could see that this is my mum and I had a great friendship with her all my life, I am very slowly and painfully losing not just a parent but a good friend as well.

How do you progress through such a difficult times in your life without it driving you crazy? I have tried some counselling but it wasn't helpful.

What a hard thing to live through OP, for all of you.

What do you think would help you get through this? If you are not able or willing to adopt a more stoic / pragmatic approach to death and suffering, then counselling isn’t going to help you as this is the basis of most of it. You can’t control this and banging your head against reality isn’t going to help.

i had a very close friend die a painful and protracted death due to cancer very recently. The way I look at it is: if I am freaking out about this, I can’t help anyone. If I am undone by my own grief and anger, I can’t actually help my friend, or her daughters, or her family. The way I help my friend best is to be calm, brave, helpful, constructive - and of service. That’s where I put my grief.

Really feel for you, and can sympathise. My mum was chronically ill for years, and eventually it changed her personality. She used to be a fun and loving person, but she became nasty and selfish, hurting people like she was hurting, it was awful.
It feels bad to say, but it was a relief when she died. She was in constant pain and had zero quality of life. It took me years before the bad memories faded and I could remember the good ones, and put it in perspective, but I still feel like I lost my mum years before her death.
I'm a similar age to you, and now I'm watching my dad slowly go downhill too. It is heartbreaking, it really is. 💔

The only thing I can say is be thankful your Mum has you to do this for her. I know this doesn't alleviate the burden but it's so sad that many don't have this.

However do your parents have all the at home help they are entitled to ? I would suggest that you try to cut your visits to maybe 3 times a week?

I am not unwilling to be more stoic, it's simply not in my personality to be this way. I'm also not freaking out (I am dealing with all of the practicalities very well), I am just incredibly sad that my mum is not only having to deal with one very major and horrible disease but several. Unless you have dealt with dementia first hand it is very hard to explain to anyone.

We have lost people in out lives (including out 4 year old niece and it goes without saying that was horrendous) but dementia is a wicked and evil disease.

Thank you, it is so hard when it changes the person isn't it? I often secretly wish something will take my mum before the dementia completely finishes her off and then I hate myself for feeling that way.

My parents do have help in the form of a daily carer and mum goes to a day centre which she loves. These two things are an absolute God send tbh.

I’m wired much more like your DH, but am
supporting my husband who is going through a very similar situation with his dad. You are obviously an incredible daughter and your mum is so lucky to have you. You are honouring her, and your relationship with her, in everything you are doing. You’ll get so much comfort when she has died when you look back at this time and know you did everything you could. Life is hard and death is awful. You are doing so well.

Oh op you sound like you are doing an amazing job for your mum and its completely understandable how devastating you would find it.

I think with men a lot of the time this kind of response comes from their own guilt that they feel like they don't know how to support you. It's not actually anything to do with you, it's their own emotional incompetence coming out.

I don't know what to suggest about how to cope. For me, probably I'd be walking or exercising and trying to be kind to myself.

for you

are you able to carve out any time for yourself to look after you? Even if it’s just 15 mins or meeting a friend for a walk. I have a lot of caring responsibilities and this keeps me sane just about.

There’s nothing wrong with grieving for a much loved one. Take as long as you need, there is no timeline at which you need to be done.
You are doing an amazing job of carrying on your caring work and being there for your mum and your dad. Your husband has no business shutting you down just cos he’s so good at shutting off his emotions.
If you need someone to offload on , do see a counsellor, just for you so you have someone to give you an hour now and then so you feel heard. It’s very healing being heard. Sending a hug x.

I’m so sorry this is happening to your mum OP. It’s the cruelest thing.
Are the BC appointments achieving anything? If hospital appointments are causing her (and you) distress is there a case for just leaving it be. All very well to see how its progressing, but if she’s not up to treatment maybe best left alone.
I’ve found that medics seem to only treat their disease/speciality with little thought of other conditions the patient suffers from. Probably doesn’t cross their minds that a scan is a big deal for a dementia sufferer.

Don’t feel guilty for wanting this to be over for her - I used to pray every day that it was the last day for my relative, they became a shell of their former selves, and held on for years like it unfortunately. But you can’t admit that to anyone thats not experienced it themselves without looks of horror!

Try and get a little bit of an escape every day, where you forget all your troubles briefly - a coffee with a friend, walk in the woods etc. only has to be 20 min, but essential for your own well being.

I'm 8yrs into Alzheimer's with my mum, she's no longer the person who was my mum, generally unable to talk, walk, feed herself, understand much or do anything except she still loves music and that sparks something in her.
It's stressful, awful and draining. It's somewhat easier now mum is in a home that she's settled in, calm & content.
It was somewhat easier as my mum wasn't always that nice before she got dementia but has turned into a much nicer little old lady (she could easily pass for a decade older than she is, the toll it's taken on her)
Siblings have been difficult over the years adding to the stress.
Mum doesn't really know who my kids are but she still likes to see kids so is happy when they visit.
My brother and I have come to agreement with the home / drs that she has no medical treatment except to relieve pain (or jabs to protect those around her) , as what are we prolonging her life for (she has no quality of life). She had a hospital admission 20mths ago that was such a truly awful experience that I would do anything to keep her out of there again.
It's hard & that's before you get to balancing work, family or your own health (I have a chronic disability)
Support groups (online) help a little, having a good cry is necessary, accepting it's shit and that's going to be the case is part of it but also finding some good moments.
With me & my mum it's music, she has always loved the musicals so I bought her a new stereo for her room and we play musicals & I sing along (she doesn't always respond but when you find the right one it's magic) and I carve out movie time and when I can I spend a Sunday morning with her watching movies, she unexpectedly loved the Barbie movie & Indiana Jones so we've stuck with bright and silly stuff.
She can't speak but spending time with her 'doing' something positive helps keep the relationship alive.
Find a positive no matter how tiny and grip onto that

I can relate OP.
I was actually relieved when my parents died. Of course I was sad, but their last few years were miserable and there was nothing I, or anyone else could do to reverse that so I was glad it was over - for them and for me. I felt really guilty about how I felt but talking to others later I discovered that it's really common and I have come to terms with it over the years.
My PILs are about 15 years younger than my parents so whilst I was going through this my DH was also very pragmatic and more or less said "well that's the way things are, circle of life etc etc" but now his parents are in the same situation it's a different matter. I haven't reminded him of what he said to me as I do of course understand the stresses whereas he didn't when I was at that stage, but I can't help feeling just a little bitter.
No advice sorry, but just wanted to say I understand and that you are not alone.

had to post. Huge hugs to you. Both you and your mother sound like tremendous people. You are a very loving daughter and should be proud of yourself.

I would consider moving to an approach that hospital is just for emergency care - accidents etc. What is the benefit for her of the treatment? Does that outweigh the distress in the moment of being in the hospital? Only do things that make her happy unless absolutely essential. Fortunately the medical staff involved in mum's care appreciated that. Reduced a lot of the distress.

Totally understand how you feel. My mum lived with dementia for ten years after my dad died and it was the most difficult and depressing time for me.

I cried many times during the last few years - grieving happens way before someone dies when they have dementia.
My brother was more like your DH and we struggled at times to reconcile the fact we were dealing with things so differently.

A few things that helped.
Recognising it was grief and naming it as such.
Explaining to other people what anticipatory grief was and spending time with the people who got it.
Being OK with being angry sometimes - in fact fucking furious.
Lots of long head clearing walks and times that recharged my emotional battery.
Knowing that my mum wouldn't want us to stop enjoying life and feeling the joy.

I also had frank and open conversations with the GP and family members about advance care plans and how much we would attempt to keep her alive.
We agreed no extraordinary measures because she had no quality of life. So no further tests or medical appointments- just antibiotics if she had a chest infection and hospital admission if she fell and broke something.

She died earlier this year and it's only looking back now I can see how much of a toll it took on me. I was definitely borderline depressed. Look after yourself- it's essential if difficult.

Oh OP you've set me off now. I'm so sorry. Of COURSE you are distraught! It's horrible seeing our loved ones fade.

Try to look after yourself. Take walks, swim, garden, whatever makes you feel calmer. Lunch with friends?

I don't know the answer I'm afraid.
You sound like a wonderful daughter & your folks are lucky to have you.
Sending huge hugs 💛

@ArnieandBob, I really feel for you. I had to help nurse my own Mum through pancreatic cancer and it was so traumatic. I hated seeing her go from about 12 stone to only about 6 1/2 stone when she died she was skeletal. I know how you feel but you will get it through it all whilst she lives and feels it later once she's passed. Even if you tell her bits of news and she's interested just in the moment but she forget everything you've said 5 minutes later try to remember you will have made her happy for those 5 minutes you were telling her. I hope you have support in real life and if you do accept offers of help or pampering they offer you. I used to go for a massage with my sister which helped us relax and unwind a bit in between caring duties. ☕🍰💐

Thank you, I do try to get out every day with the dog, nature is my salvation, it grounds me.

I do get out with my dog and go for long walks. I also have a great friend who I talk with every week, she has just lost her mum so we lean on each other.

Thank you so much, I feel terrible having those thoughts and like you say it isn't something you can voice to too many people but who on earth wants to see a loved one suffer so much, we don't do that with our pets and if anyone does allow a pet to live too long with a terminal disease they are seen as allowing their pet to suffer yet we have no choice but to witness the humans we love suffer so greatly, life is pretty unfair at times.
I am monitoring the bc issue and will see what this latest ct scan shows and discuss the future and plans from there but it does seem cruel to put mum through this when she has no understanding of why she is being put through all of this.

Music does wonders to many dementia patients, it's wonderful to see them shine when music is played. They play lots of 50's and 60's music at mum's day centre and everyone comes to life, it is just so lovely to see a chink of something positive come from such a dreadful disease.
Mum loves Joe Brown and we pop that on Youtube for her, she watches the same clips over and over like it's the first time she has seen it but it leaves her smiling and that is good enough for us.

Thank you. Tbh, I am absolutely dreading the last stages of mum's dementia journey and if I am wishing her to be relieved of her suffering now God only knows how I will feel later with this. I feel that I am on tenterhooks.
All illnesses are dreadful but there is something truly wicked about dementia and I really don't think anyone fully understands unless it has touched their lives. Neither my husband or my friends fully appreciate how awful it is, I do find solace with FB support groups, every time someone posts of there I get it, I fully understand.

Thank you Blueskies3

Unexpecteddrivinginstructor I think this will be the conversation we need to have with the consultant at mum's next appointment.

@ArnieandBob I'm so sorry you are all in this situation. 💐💐💐

If dementia was a person I'd kick it to certain death, it's destroyed so many wonderful folk and their families.

Does your lovely mum have things to play with? Years ago when I started working in care we weren't allowed to give dementia sufferers things that weren't "age appropriate" such as dolls. I (wee rascal I was!) Decided that they could sack me and I was bringing in dolls anyway and nobody told me off because we all knew denying the ladies was far more cruel than simply allowing them to have child's toys.
(The result before a few of us rebelled) was having little old ladies walking around nursing their soiled pads as tho they were babies because they so desperately needed to nurse something.

But dolls, soft toys, there are Sensory books made of fabric your mum may enjoy.
Also foot baths with bath bombs etc and maybe even Sensory lights or a electronic photo frame which changes images constantly to keep her mind a bit busy?

I know nothing really can be done for your peace of mind currently whilst youre dealing with this, but if you think about the things you can do for her, the love you'll cherish her with when she needs it the most, one day you'll look back and not just be proud you did this but also relieved your lovely wee mum got everything you could do for her in her last years. Do you have carers coming in? Or some kind of frozen meal service?