struggling with the care of my frail mother

[Losing_my_Mum]

Hi friends,

I am new to this forum and not sure if I'm in the right place. I am struggling with the care of my frail mother who has advanced memory-loss and paranoid schizophrenia. I have been in and out of a state of 'slow grief' for almost two years, as the mother I love slowly disintegrates in front of me. I had to put her into an aged care facility when she was 74. She has been my best friend and confidante, and was so learned and wise... now she doesn't know where she lives, and has forgotten how to turn the TV on (among many, many other things) and I can't talk to her about much. She often just sits and stares at me, vacantly, and it breaks my heart.

My two brothers won't help, although one of them visits Mum about once a month for an hour or so. He's the one who moved house last year and didn't tell me where to. The other one is too busy with his own life, and holding a grudge over some of Mum's bad behaviour to him, because she is ill.

My husband and daughters help me as much as they can, but its always me Mum wants to talk to, often phoning 3, 6, 10 times a day. I want it to be over.

Then I feel disgusted and ashamed with myself because it being 'over' would mean Mum dying, and I know I would miss her, but not this 'other' lost, frail person' she has become. When well-meaning friends say "At least you still have your mother?", I feel even more isolated in my grief, because they clearly know nothing about this 'long goodbye', and how much of her has already died right in front of my eyes...  yet I still have to keep showing up for her, this stranger.

My daughters are amazing, and have been worried about me and want me to get some help, so I don't end up like mum. I thought maybe coming to this site was a step in the right direction.

[Neil_1]

Dear LMM

Welcome to Beyond Blue and thank you for coming to here and providing us with your post.

Your 2nd last para was so true with regard to 'well-meaning friends' and their comments.  Because no-one knows this kind of situation you're in, unless they've been there before and even then, these situations are so personal and unique as we all react to them in our own way.

It is great that your daughters are so caring and supportive for you and it is great that you've come here;   but in this regard they could be on to something also.  It does really sound like your grieving process has already started (i know mine started early when I lost my dad to leukemia as he was so riddled with it near the end, that I know how you say, that you feel like you've lost your mum already).  Have you sought out a gp to have a chat to about this?  It might be something that could be a good thing to do in the not so distant future.

How is your mum going physically?  I've heard where the mind can go, but with regard to physical issues they can be quite strong and well.

Also I know these are only words from someone you've got no idea who they are, but if I could ask you not to be disgusted and ashamed with yourself - these are reactions that you're having for the situation that your Mum is in and believe it or not, I fully understand what you're saying and what you're saying is in a totally well-meaning way.  Rather than to see her suffer and more or less have no real quality in life, yes, I can see where you're coming from.  It's the reaction of someone who cares very deeply for their Mum.  Someone who doesn't want them to be sliding downwards this way.

LMM, I'm understanding your situation and I bet you've said more than once, 'doesn't it suck how life can turn out, or how crappy the cards you are dealt with'.  I mean, they've lived a wonderful loving caring life - why can't they live just a few more years of quality and not have to go through this at the end.

I do hope you can get back to us and thank you again for posting.

Kind regards

Neil

[geoff]

dear LM, if I can abbreviate your username, and want to thank you for trusting us here, and hopefully you get plenty of support here, so you have come to a good site.

I do know how devastating it is to see your mum deteriorate before you as the same happened with my Mum who was also in a nursing home.

You see them go from being an active, thoughtful and loving person to one which we truly hate to see decline so rapidly.

My Mum was the same as yours just look at you as if you weren't there, and even when you tried to kiss her she would put her hand up and block you from doing so, just as though you were a stranger, so you come away depressed, and this is what is happening to you unfortunately, especially as you were once so close.

The number of times she would ring you would probably be about nothing, or not make any sense, and this too would be very upsetting for you.

It's not that we want them to go it's just that we want them to finally find peace, and not to be tormented by they illness any more.

Your daughters are very astute and are worried not so much that you will end up like your mum, but fall into this pit of depression, but I think that you have, it's just that you covering it up, and that's why you need to begin to see your doctor and then a psychologist or perhaps a psychiatrist, personally I prefer the former, but others feel that a psychiatrist would be better, as they administer medication for you.

I know the strain that this is causing you, and you will always love your mum, but you have to prepare for when the day comes, but you can't do this unless you receive some help.

I would dearly love to hear back from you. L Geoff.

[Losing_my_Mum]

Thank you Neil and Geoff,

I appreciate your kindness, very much. This is a crappy hand to be dealt, but I know I'm not the only one. I know it's not her fault and there's no intention on her part to hurt me. I do need some help to become more resilient though, because it's far from over yet.

So I have made an appointment to see my GP this Wednesday evening to discuss this and maybe get some temporary medication?

Not sure how I feel about that really, but I can ask the questions anyway...

[Neil_1]

Hi LM

Thank you so much for getting back to us.

I think that is a positive move for getting yourself to see your GP.

I guess between then and now, you can possibly think about any questions you may have and so you can ask them at your appointment.  Perhaps get a piece of paper and think of things you might like to ask - and it can be anything related to your Mum or to how you're feeling or to possible medication?  Always remember - that NO QUESTION is too silly.  Much better to ask than to go away and think, "Oh I wonder about if I'd asked that?"

On this site it's much the same - there's great people here with years and years of experience, so please if you feel you've got other things to ask or talk about, then please do.

Kind regards

Neil

[White_Rose]

Hello LM

Thank you for writing in here. I hope we can help you.

First of all I want to say that I have no personal experience of people in your mother's position. So I may come across as meaning well but not understanding. If so please accept my apologies in advance.  What I want to tell you is what I have learned from other sources and I hope this may be of use to you.

I read two days ago of a nursing home in Toowoomba that is involved in a research project involving the use of Tibetan singing bowls. This project is managed by the University of Southern Qld and The Joanna Briggs Institute. It involves playing CDs and monitoring behaviour. I know it sounds very clinical but they are apparently having good results. It is being used in a closed ward among patients with dementia. It is used to relieve pain and reduce stress.

I think there is more information on the Qld Alzheimer's web site.

I understand your mother does not not have Alzheimer's  but I wonder if this would benefit her. I hope I am not being intrusive and insensitive. My feeling is that anything that benefits someone who gets easily agitated is worth trying.

The name of the nursing home is Symes Thorpe. I'm not sure if you will get this as it may be against the rules to mention these kinds of names. Good luck

LING

[Losing_my_Mum]

Thank you for your thoughtful reply. I have heard of music therapies and even using aromatherapy and photos to prompt memory retention. The sadness is that the staff have little time to spend with each resident, and they are so under-staffed and under-funded. They told me they were getting iPods loaded with age-specific  music but I never heard any more about it. Mum cant work one anyway, and they dont have time to sit with her for long. I work full-time, and visit after work and at weekends, and still feel guilty I dont do enough.

Some days they dont even put the telly on for her, or maybe she's turned it off then called me to say its broken again. I'm a bit negative right now, but maybe I can revisit the music idea next time I go. 

[AGrace]

Hi LMM,

I just wanted to check in and see how you are going. I'm assuming by now you may have had your GP appointment, was this useful?

It can be really hard to see our loved one's start to have a reduction in quality of life, and in turn it does start to affect our own quality of life. I think it would be worthwhile reminding yourself that you are doing all you can for your mum, and I'm certain she would appreciate this if she was of sound mind. Sadly it's the illness that's talking and acting out most of the time. It's hard to accept that she is no longer the mum that you used to know. In a sense this is the start of the grieving process, and it might be worthwhile speaking with a grief counsellor just to be able to get some additional support.

As much as it may be challenging to do, I don't think if your mum was her real self that she would be expecting you to drop everything for her whenever she needed. Is there a possibility that you could create some healthy boundaries which would benefit both of you. Maybe you don't need to answer all of her calls all day? Maybe you don't need to visit every night after work? Does she get any leave from the nursing home? Is she stable enough to perhaps go for a walk with you once a week, so that your time with her is not always in the confines of the home?

Hope to hear back from you.

AGrace

[Losing_my_Mum]

Hello AGrace and others, 

Yes, I have seen my doctor who referred me for a session with a psychologist who was GREAT! Thanks for your encouragement to go.

I was offered anti-depressants by my GP and filled the script but ended up not taking them yet because I'd prefer to use more natural ways to tackle this, and if possible, deal with the causes without being medicated. We'll see - I'm open to it, but I'm feeling quite a lot better already. I have two more sessions booked ahead, and have been given some reading and support tools that make me feel a bit more in control of things. She says she'll give me some coping strategies to set some boundaries, and not be 'in the chaos of the disease' where I have been so long. I am grieving, which is normal, but it's resilience I need to keep going for however long this is going to take.

My job sucks, and I almost threw it in yesterday, but a minute before the meeting with my boss, I changed my mind deciding it best to wait things out until I have something else to go to, and am more 'level' in my emotional state... so I'll hang around here a bit longer and take what help I can find from all of you good people.

Thank you again.  Blessings on you all. xxx 

[AGrace]

Hi,

That's a really positive outcome from both your GP and Psychologist appointments. Good on you for taking these steps.

i'm pleased to hear a shift in your mood. 

regarding the job. sometimes we have to do it for the money. It's good that you plan to look for a different job in the near future.

AGrace