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Scared of watching my mum fade

Polly145

New member
Jul 5, 2021
1
0
My mum (68) has recently been diagnosed. She’s taken it very badly. I’m an only child of divorced parents so feeling very alone. I’m so scared of having to watch my mum fade away in front of me and forget who I am - it hurts already. How do you cope with this. I don’t want to loose her yet - and know that she will be cruelly taken from me while I watch.
 

lemonbalm

Registered User
May 21, 2018
1,757
0
Hello @Polly145

This is a very difficult time for you and your mum and you will both need time to adjust. The following links might be useful for now. There are lots of us out here who have been through the same thing and can help you along, so no need to feel lonely. Keep posting for advice and support, or just to let us know how things are going.



 

Forgetmeknot

New member
Jun 9, 2021
8
0
Hi Polly145, I know exactly what you mean. Seeing someone fade before you is difficult. I would just say make the most of every good moment, and there will be many, as you go along. Make happy memories. Hugs
 

Acceber

New member
Oct 3, 2020
7
0
Hi Polly. I am in a similar situation too. I found it helpful to have a team of people who are professionals who can guide me. My friends are lovely for sympathy and listening but I found I needed accurate info from people experienced in the field. This has included a really good memory clinic nurse, a private pay as you go social worker, solid financial planning advisor etc. It has helped with the decision making going forward, they have walked the journey with me and sometimes told me how it is; this has enabled me to understand more of the illness, keep on top of changes in how mum presents and make the most of our time. x
 

Violet Jane

Registered User
Aug 23, 2021
393
0
It's shocking to receive a diagnosis of dementia and natural to feel fearful about the future. On the practical side I would:
1. try to get your mother to draw up Powers of Attorney (and a will); and
2. do as much as you can with your mother now whilst she is still relatively well eg holidays, days out, trips to the theatre, museums, galleries if she is interested in any of these things.

As an only child of divorced parents you are likely to shoulder the caring 'burden' on your own unless your mother is fortunate to have helpful relatives or friends. Even if your mother does have such people in her life their input is likely to be limited in scope and / or time limited. They will almost certainly not want to provide personal care. I'm not saying this to scare you but to put you on notice that you are likely to have to engage carers at some point either for practical reasons (you work / live too far away to provide day to day care / have family responsibilities etc) or because you cannot manage without help any longer. Don't promise your mother that you will never place her in a home as you may need to do that at some point and guilt about breaking your promise will only make this more difficult.

Do keep posting with questions and for advice. There are many knowledgeable people on these forums.
 

Daisy21

New member
Sep 19, 2021
2
0
My mum (68) has recently been diagnosed. She’s taken it very badly. I’m an only child of divorced parents so feeling very alone. I’m so scared of having to watch my mum fade away in front of me and forget who I am - it hurts already. How do you cope with this. I don’t want to loose her yet - and know that she will be cruelly taken from me while I watch.
Hi Polly I feel the pain in what you wrote. It’s the unknown what’s gonna happen what’s she going to be like it’s very scary! My mum is now 73 she’s had it 10 years and I have been scared from the first moments I noticed and I knew exactly what it was! It took me 6 frustrating years to get it diagnosed which was so difficult. My mums gone in a care home 6 months ago as she started wandering and it got dangerous as she kept getting lost. I have always felt like everyday was going to be her last and it just took over me. I started counselling which definitely helped. It is very hard & you need to keep talking about it with people who understand! That’s the best thing you can do is connect with people who know what your going through. Just enjoy mum while she is still mum. My mum still knows who I am she doesn’t have much conversation and I do feel great sadness that she’s not the same but I’m also grateful she’s still here. ❤️
 

garfield3

Registered User
Jun 30, 2018
294
0
So sorry to hear about your situation. It’s an evil disease. The only thing I can say is get your house in order i.e. POW & POA etc. Like has been mentioned before. Enjoy all the good times. with her. When mum, faded in front of me it was so hard. Especially, when she forgot who I was. What got me through was understanding/ realising it was part of this journey and I visited her as often as possible and I knew that I’d done my best. For me even though it was so hard seeing her, it was helping me and giving comfort. I would have rather seen the good , the bad and ugly rather than not at all.
Good luck and sending strength. Sorry for the ramble!
 

karenbow

Registered User
May 24, 2021
43
0
hi polly so sorry that your mum has been diagnosed with this awful disease and understand your feelings- it is scary when you first find out and when you start understanding what may happen it is really difficult- my mum was diagnosed about 5yrs ago but looking back i can recognise the change in mum probably 3yrs previous- my mum is now end of life and we have gone through every stage with mum and although it is awful , heartbreaking , as a family we changed along with mum and let her progression with the disease lead us to cope with it in the best way- she was fading and obviously wasn,t the same as she used to be but she was still my mum and this disease has never overidden our love for her and we,ve had many happy times- my gps advice was try live with it ,dont let it consume you as everyone is different and she was right- mum has been in a nursing home now for 3 months it was the most painful thing ive ever had to deal with and coming to terms with mums eol situation has been heartbreaking but the journey along the way we managed and are grateful for the good times i really wish you and your mum all the bestx
 

lushr

Registered User
Sep 25, 2020
149
0
me too, only child, dad gone. you got the diagnosis early, you can make the most of your time together, build patterns, talk about the things that matter, get her stories.

my mum went down hill really fast, by the time we got diagnosis she was already too far gone to understand it.

you can still have a great relationship with her for a long time, just some of the organising and responsibilities fall to you, so you can take care of her, and she doesn’t have to worry about bills etc.

an accountant gave me a contact for a retirement financial planner who knew all about pensions and nursing homes and costs, between them they guided me through the later part.

and this forum helped me process my feelings.
 

Jacs321

Registered User
Jun 12, 2017
23
0
Hi Polly

Its ****.. no denying that one! It sucks, but you're in good company on here, it was a massive help to me in the early stages. I wasn't the only child but the one it fell to with my brother being abroad so can empathise with your situation. The advice already given is sound, get things in order like power of attorney for welfare and finance now if she is willing, it will save you stress in the long run. Try and make the most of your time with her and seek out new ways to enjoy quality time together. Be led by her and her interests and be prepared to be flexible it changes frequently. In my mum's case she declined in her sociability and willingness to go out but we found new ways of connecting as she developed a love of watching musicals and we spent hours together watching these. i took lots of video of her recording her spirit and sense of humour while i could and which i hold dear now. She's still your mum no matter what, its frustrating, and upsetting at times and it evolves but there will still be days of fun and enjoyment. Importantly seek support and take time for yourself, its a marathon not a sprint. Hopefully there is a post diagnosis group? In my mum's case she refused to go but i went and it was a god send in education and advice on local services. Mu mum refused to access services but it armed me with info and linked me into support i could get including our admiral nurse. Good luck x
 

Jackeroo

New member
Nov 6, 2021
2
0
Hi everyone, I'm struggling with my mums recent diagnosis, even though I'm lucky to have the support of my 3 sisters its certainly doesn't make it any easier. We had been trying to get a diagnosis for a few years but Covid didn't allow this to happen so i resented the NHS a bit as felt she could have been on tablets a lot sooner. Anyhow the tears flood often and i just can get my head around the fact that my mum wont know who i am somewhere along this crazy journey. I look at her and she just looks like a lost soul, she knows who we still all are but the conversations are very short and she is also extremely emotional and understandable. I guess my main concern right now is i don't want to see her as i just get upset, i avoid it to be honest and i know this isn't the answer but I'm just really struggling to get me head around it. Im then riddled with guilt as this isn't me going through this and pull my big pants up bit its a constant battle in my head the moment. Please tell me I'm not alone in feeling like this?
 

Jackeroo

New member
Nov 6, 2021
2
0
Thank you @Cat27 is all very daunting right now and my patients for anything is very thin, its like my mental capacity has shrunk and i just cant process anything as well as working full time and having 2 children.
 

jennifer1967

Registered User
Mar 15, 2020
6,768
0
Southampton
just focus on now rather than what might be in the future. your mum recognizes you, dont think about when she might not. its thoughts of what you could lose but you havent at the moment so make memories and i find my grandchildren are not judgemental and accept things how they are. some are a bit young but the older ones understand and are helpful with him.
 

canary

Registered User
Feb 25, 2014
16,076
0
South coast
Your mum might not forget you. My mum never forgot me right up to the end. She may not have always remembered my name and sometimes she got confused about family relationships, but her face used to light up every time I visited her.
 

Roman223

Registered User
Dec 29, 2020
48
0
Hi everyone, I'm struggling with my mums recent diagnosis, even though I'm lucky to have the support of my 3 sisters its certainly doesn't make it any easier. We had been trying to get a diagnosis for a few years but Covid didn't allow this to happen so i resented the NHS a bit as felt she could have been on tablets a lot sooner. Anyhow the tears flood often and i just can get my head around the fact that my mum wont know who i am somewhere along this crazy journey. I look at her and she just looks like a lost soul, she knows who we still all are but the conversations are very short and she is also extremely emotional and understandable. I guess my main concern right now is i don't want to see her as i just get upset, i avoid it to be honest and i know this isn't the answer but I'm just really struggling to get me head around it. Im then riddled with guilt as this isn't me going through this and pull my big pants up bit its a constant battle in my head the moment. Please tell me I'm not alone in feeling like this?
 

Roman223

Registered User
Dec 29, 2020
48
0
Hi Jackeroo,

I feel the same. I'm struggling to believe my mum is in a care home and may never come out. I'm struggling to believe where her personality is at times, where she is? where is my mum who used to laugh and joke with me but is no more. As I am writing this, tears are rolling down my face. I know I am losing her bit by bit - that is what I am struggling to accept!!