Getting to the point where I cannot cope anymore

[Sapphire222]

Hi everyone

Just wondered if anyone has/is going through a similar situation to me and their thoughts on what to do.

I am the main carer for my mum who has alzheimers and my mum refuses any outside help whatsoever, even though it has been explained to her that it would help me. I have managed to cope for the last 18 months, but finding that as mum is getting worse I am struggling to cope and getting irritable. (I suffer from depression and have been off work since March this year and this is my third episode of work in two years.

It is getting to the point where I will soon be losing my job because of all the sick leave I have had and at the moment do not think I could cope with a job as well as looking after my mum.

What makes it so difficult is that my mum refuses to do things I ask her no matter how many times or whatever I say to her. She just gets upset or angry with me as if I am in the wrong. For example she is supposed to put and keep her digital hearing aids in all day, and does not wear them at all which makes it very difficult for me as not only does she ask me the same thing over and over again, but she cannot hear me so I have to repeat it even more because of her deafness.

Another example is to do with her incontinence, I ask her to wear pads at night, but she just hides them under the pillows.

I really don't know what to do any more as I am beginning to feel guilty that I cannot cope any more and if social workers say she has capacity then she can refuse any carers going in.

Please could I have your views. It would be very much appreciated.

Thanks

S.

 

[chris53]

Hello Sapphire, and welcome to Talking Point, here you will get understanding and support as and when needed, so sorry you are in a dark place at the moment with your own health problems and mums may I suggest that you keep a diary on all which has been going on and see mums doctor as soon as you can, you will be giving him/her further information, the GP should be able to do a referral to get social services to do another assessment with you there( sorry not sure if this has already been done?)you need to make them aware that you cannot cope and they need to take this on board, so please do not feel guilty,you have done so much on your own and now need supportive help, if possible could respite be arranged for mum, if only for a few days, just to give you breathing space? having carers in can be a battle, but if this can be arranged maybe a couple of times a week to start with, it's worth a try above all please do keep posting here, I am sure many here will be along with good suggestions and advice! Take care and also sending a hug - Chris x

 

[dottyd]

You need to read myBonnie by John suchet.

It's all in the book. You need more help or maybe it's time for your mum to have 24/7 care

 

[Big Effort]

Dear Sapphire,

I see this is your first post, and wanted to be one of the first to welcome you to this forum, a haven of sanity and compassion for carers in a world that has gone mad on us all. I am sorry that fate has dealt you and your mother such a challenging hand.

I am replying though, because I am starting to believe in the right thing happening at the right time: and your question is the same on I am grappling with. Can I keep Mum at home any more?

This is a surprise for me because I managed to be with my Dad, real heavy nursing with a new born baby (son was 7 days old when Dad had his massive stroke), and I found it a rewarding doddle compared to Walking the Alzheimers Walk with Mum.

First some thoughts about you. You have depression at the moment - and (in my view) this is a time when you need time for yourself, just to be, to feel, to take your meds and see what works for you and what doesn't. Doing this in a clear, serene manner must be impossible when tending one-to-one to someone you care about with Alzheimers. Just my view, but I have had a stint of 'environmentally caused' depression too, and I know that having time to recover, to realise what did me good and what didn't, was instrumental to getting that episode behind me permanently.

Second, there is your work. We live in a tough world, where fit and healthy people do well, and the rest struggle to make life work (again this is my personal opinion). Jobs don't grow on trees, you already have one, and if it serves you then it is worth keeping. Just imagine the added stress of being unemployed and having to find a new job, the stress of starting somewhere new, when you are already frail and vulnerable due to depression and being a carer. Just my view, of course.

So, now back to me. Mum isn't a difficult patient. She is kind and loving. No violence unless under duress. Oh but the dementia. For four years I have been doing ever so well, enjoying it even. Since January, when she heard her beloved son had an aneurysm and was critically ill, she has slipped and slipped. It isn't the care, the physical care that gets to me. I don't mind the practical aspects like showering her, or getting her dressed. But I have become aware now that I cannot cope with all the insanity. Mum lives in a different world. A very narrow one. Things she likes she forgets instantly. Things she dislikes, she hates. I can tell her mood the first time she opens her mouth: "I hate my nightie, my shoes, my muesli etc." This is a very personal thing. Actually I was (am?) committed for the long haul, to give her a home death like we did with Dad. But I find I cannot cope with the Insanity. I am surprised at myself. I have tons of patience. I love my Mum to bits. But this is 24/7 relentless insanity.

I feel ashamed because Mum isn't violent. She doesn't hallucinate or wander at night. But she does have anosognosia (total denial of her illness, to her she is normal, and I have dementia). Anything that doesn't tally for her means I am lying, a monster, and so on. So now I am desperately trying to find a live in carer..... it has been a long process and I think I have one in mid-August. But I honestly don't know if I can last as long as that.

In sum, Sapphire, I think these decisions are intensely personal. We often don't know our limit until we are well past it.

Now I am going on another tour of the local care homes, am getting Mum enrolled (I live in France so they can take her from one day to the next). I did this last September when I started work, but found I couldn't do it to her. Now I find I cannot do it to me. I am drowning in dementia and my soul is screaming with pain.

I am too close to Mum, I love her too much and caring for her in this state is too too painful and emotionally difficult. So please god/Universe, deliver that carer, may she be a gem, so that we can live a few more months on borrowed time.

I am not going to give up my job. I didn't work for 4 years to care for Mum while it was rewarding. Now she is saner than I am. Tears threaten all the time. How on earth could I work in front of groups, be jolly, upbeat, motivating, when I myself am an emotionally loose cannon?

I know this isn't of genuine help, but perhaps sharing some of my thought processes may make you feel less alone and less incompetent. Dementia is a very hard taskmaster. It is stronger than I am, endlessly fit, and I must acknowledge this.

I had one stint of amnesia - 12 hours of being unable to form any memories or retrieve any. While I felt nothing at the time as I was unaware and obviously have no memories, I did traumatise my son and husband. They thought I had had a stroke. Amnesia is also a call for attention: my attention. I am not strong enough to cope with this endlessly.

Sending you much strength and courage, and I am so glad you posted today. It was lovely to pour my heart out to you. Hugs and chin up, BE

 

[Dunkery]

Hi Sapphire,
I have joined the Talking Point forum today and am so glad this was recommended to me by an Alzheimer's Society support worker. I just wanted to let you know that you are not alone-I am in a very similar position to you. I am the sole carer for my mother and she does not want anyone else to care for her either. When the doctor or psychiatric nurse calls, she tells them she is fine and then as soon as they go she is crying and getting agitated. However, I have found an avenue of support through contacting my local authority carers' organization. I am sure you would be able to find a contact via the internet for your area. I did that last summer during a particularly difficult period and was put in touch with a carer support worker. They are there FOR YOU, even if your mum does not want anything to do with them. My support worker gave me lots of good advice, such as applying for vouchers which help pay for a sitter to stay with mum while I go out for a couple of hours each week, advice about a course entitled "Looking after Me",which I hope to attend in the autumn and other support. The most important thing about this is just having someone to talk to when it all gets a bit much! I do hope you get the support you need. Take care.

 

[Polly1945]

Hi Sapphire and Dunkery


Welcome to the forum, although sorry that you have to be here due to this dreadful disease.

I looked after my Mum (96) for nearly 5 years, but the time came when I had to admit she needed 24/7 care. I was the worse day of my life, having to take Mum to the care home, but she has settled in reasonably well (has been there 7 months now).

My Mum used to go to this same care home for respite care now and again and also three days a week for Day care which she loved. So she was used to everyone, I think this helped a lot. Does your Mum do out for Day Care? My mum used to call it the "over sixties club". The local community transport would pick her up in the mornings and then bring her back home in the late afternoons. It was good for me and certainly good for Mum.

If you don't take care of yourself and accept all the help possible then you will become ill and then your Mum would have to go into respite care.

(hugs)

Pauline

 

[glennie]

I think Alz's is the worst possible illness..watching someone you love being reduced to a mental wreck. Full of anger, criticism, and making you feel you are the worst person out. Like Sapphire, I feel ,absolutely exhausted, my patience up till now has held, but I am feeling so lonely and depressed and feel so guilty. Hubby will not go to day centre, will have no carers in to give me a hand, in fact he will have very little to do with Alzh, except for a dear young link worker who has come for the past 5 years. We are not on her remit now, but she still pops in regularly.
The strange thing is my hub by is quite sensible most of the time, no incontinence, but behaves like a spoilt child and has called me some terrible names, he never used to swear, but now I just cringe at his temper and language. As I have said in other
threads, we have been married 64 years the end of this year and have ALWAYS worked as a partnership. But you are a young person so do not feel guilty, you have
done your very best for your mum and if you can get some respite or permanent help..take it with a clear conscience.
I nursed both my mum and dad before they died, but it was nothing to being a carer for someone with dementia.
My thoughts are truly with you...Glennie

 

[Dunkery]

Thank you Pauline, it is comforting to know others understand how hard it is. You make some interesting comments. Mum has so far refused to go to daycare. She has no understanding of the strain on me, but I have just arranged to take her to a ltocal day care centre on monday afternoon for a cup of tea and chat, just for half an hour. I will tell her we are going for a drive and then say I just need to pop in to see someone. I don't like telling lies but know I won't even get her out of the door else! I know I need to keep well and to have a day's break each week would be wonderful. Thanks for your encouragement.