All roads lead to nowhere

[kerrye]

This is my first time contacting you. The last 24hrs have been rough going.
Mum is 86yrs and was found by police walking up the high rd in bare feet and wearing a few cardigans . She was diagnosed with Alzheimers 2 years ago.
She refuses to go to the day centre, and has ideas about the staff giving her sly looks and making remarks about her etc. She would get so worked up before she went, she would not go to sleep at night, but put her coat on wanting to be ready for the transport in the early hours. This meant I got no sleep for my working day.
The social worker says there is nothing she can do, she has done what she can,speak to the docters. Mum's docter says that even with different medication it would not change things much, that it is 75% Mum's,mine and social problem,and only 25% medication. No dr will give more or different night sedation as it interferes with balance and can lead to falls.
I cannot physically get Mum onto the transport, so what are we supposed to do? I have reduced my working hours to part time, and now I am having to take sick leave again. Suppose she wanders off again.
Everything would have worked so well... a day centre for Mum on my working days, a carer to see her on and off transport, but I feel so frustrated and at a loss that Mum refuses to go. What happened to the support for carers who wanted to look after their relatives? It seems that when there is no textbook remedy, support goes out the window.
Sorry for ranting, any advice would be greatly received.

Now Mum refuses to talk to me, saying I was to blame for her being brought home by police, and that I should have left work sooner, yesterday.

 

[CeliaW]

Hello Kerrye and welcome to TP. It sounds as though you have a horrendous amount of pressure and you obviously aren't getting the support you need. Others will come along soon and explain some of the ways you can get help but there is one thing I may be able to help with.

We had a similar problem with Mum going out when she shouldn't and have had a Telecare alarm put on the front door. It can be set for different times, ours is for the overnight period. If the alarm is triggered by the door being opened then Telecare ring the house to try to get an answer and if not - they call the named contact person or emergency services if they can't get an answer from the prime contact. You should be able to find out about this via Social Services - hopefully that would help.

As said, am sure others will contribute shortly, but keep posting and you will get lots of support and have the benefit of others who have experienced the same or similar issues.

Take care

Celia

 

[SallyPotter]

Hi Kerry
All I can say is that you need to pressurize doctors, social workers and all to help, its not fair on you, however much you may wish to be involved, to have it essentially left it all to you. Both my parents have dementia, mum is 89 (with advanced osteoarthritis also) and my dad is 84 , when they were diagnosed at first it appeared as if all concerned (doctors, social workers etc )thought that I would be able to step in and take over. I have to work full time to pay my mortgage and couldn't become a full-time carer because of financial and emotional reasons.
Stick to your guns, make a note of every time something like this happens. Also try another doctor, its well worth getting a 2nd opinion.
Good luck, make sure your getting time to yourself to accept your changing situation and remember what is right for you is not necessarily what is right for other people.
Take care x

 

[KentJude]

Hi Kerry welcome to to TP, you'll get lots of support from other members. Your situation sounds like mine 4 years ago, I was living with mum while working, although it's her house. It worked ok for nearly 2 years but mum actually got expelled from the day centre for trying to escape all the time. Carers would come in a few times a day but mum still used to wander out and call at the neighbours etc.

Mum's psychiatrist at a the memory clinic put her on sertraline. It worked well and didn't make her too unsteady or drowsy. Everyone's different of course.

It's incredibly tough for us to keep our relatives at home. The government keeps talking about improvements for carers but you wonder if it's just lip service as nothing substantial changes for the better does it. I have given up work in the end but but i realise few people can do that. And it shouldn't have to happen. It is a postcode lottery as well if course as regards support. I wish you all the best.

Sorry I'm not of more help but I'm sure offers can advise better.

 

[kerrye]

Thankyou to those persons who replied

I feel very sad at present. I am waiting for the social worker to get back to me about respite care for Mum, which is the road that social services are taking now, so that I can go back to work and think things through for the future.
Poor Mum has no idea that next week she will be in a nursing home for 4 weeks.I feel tremendously sad and hopeless, and full of guilt. The plan is long term care in a care home.
How can I explain to her why this is being done? Is it the right thing? When she is confused I feel that it may be the right thing to do so that we can get used to the seperation after all these years together.But, like today, when she is talking to me again(!) and she is enjoying her food, and being with her cat, and going to the shops together, and being nice and chatty, I don't know how I can do all this to her, and I feel terrible hurt tonight thinking about it.
What do I tell her is going to happen, and when do I tell her?
I wonder should I give up my work, and just stay together. My Mother is very calm with me, and she is suspicious of anyone else. I do feel that as we lack any family support, that we both will become very isolated. Everyone tells me that I need to have my own life now, sometimes it matters to me, other times it does'nt. I want to care for Mum, but she wants me to be with her at all times and not to go to work.
I can't bear to think how she will feel next week, and how scared and hurt.
Any advice would be greatly received and thankyou for taking time to read this.

 

[tarababe]

Hi Kerrye. It's an awful position you find yourself in and one a lot on here have been through. Try to remember that you are a loving daughter who is trying to do the best for your mum. You know, as parents they also had to make tough decisions at times regarding our well being and although not necessarily due to illness, still with a heavy heart. You have to do what you feel is right for both yourself and your mum but at the same time be realistic about it. You have a right to a life and a future and just think carefully about giving up work as that in itself may bring other problems.

Whatever you decide, please come on here to get the support you need. I hope you can stay strong for whatever choice has to be made.

 

[Witzend]

This is so very hard for you, I am so sorry. But please do think very hard about giving up your job and livelihood - and it's not just that, you would eventually be giving up your whole life. Sooner or later someone needs 24/7 care and supervision - in so many cases eventually you can't safely leave them even for half an hour. And it almost certainly will get harder and more stressful and exhausting.

I think nearly all of us feel dreadful guilt and anguish when it's time for a care home, or a long period of respite. We agonize about what to tell them, and when, and we worry terribly about how they're going to react. Usually it's best to say as little as possible as late as possible - simply to avoid unnecessary distress or agitation.

People sometimes say it's just a little break, or a holiday, or 'the doctor says it's until you're a bit better'. But these won't work for everybody - sometimes you have to be a bit more inventive. Could you say you have to go away for work, they're sending you on a course or something - and you have to go? You could say it's just for a few days and (maybe) 'the doctor says' she can't be left at home alone. People sometimes find that blaming it on the doctor will work. If she says she doesn't want you to go to work anyway, you could just say that you're sorry, but you have to, to pay the bills.

However, often it's no use trying to reason with someone with dementia - you just go round in pointless circles - they can't accept that they can't manage any more - so you just have to go ahead and do what's necessary, however hard it is, without discussing it with them. We never told my mother that she was going into a care home - we never even raised the subject with her. Although she was really bad by then she would never, ever have accepted that it was necessary, and would simply have refused to go.

I'm sure others will be along with more/better ideas. Please don't despair, others have been through this and come out the other side. But I won't tell you not to feel sad or guilty or not to worry - I know all too well how impossible that would be.

 

[starryuk]

'I want to care for Mum, but she wants me to be with her at all times and not to go to work'

Hello Kerrye,

It is so so difficult. I have put my mum in a CH. If I had let her live with me, I would never never have been able to leave my house without her. I would not have been able to work, pay bills, meet with friends or ever go away. I would be dealing with incontinence, falls, lack of sleep etc etc. I thought it would literally kill me off with blood pressure going through the roof. Brother and sister far away and not interested.

Many people on here keep their relatives at home, some have partners to support them in their caring, some soldier on alone and all are better people than me!

There is a lady who sometimes comes to stay in my mum's CH for respite (physical problems). She spent her life caring for her mother (now deceased) and never married. Her 'friends' had fallen by the wayside and she became entirely dependent on her mother for social contact. She is now entirely alone.

Of course I visit my mum nearly every day, buy her clothes, treats, take her out, worry about every little sign of another infection etc, but it allows me to have some kind of a life too.
So I would say, in the nicest possible way, people with dementia often 'want' the impossible and we can't always give it to them, much as it tears us apart.

Look to the future, yours included, would be my idea.

Angela

 

[AlsoConfused]

Hi Kerrye

If you did give up everything to look after your Mum, I think you'd be condemning yourself to years of extreme poverty.

You'd be living off carer's benefits - they're not generous and you wouldn't have any money left over to pay for top ups to your basic state pension. The state pension is enough to meet the basic bills but not more than that.

It's likely you'd start job hunting again some years down the line. Currently there are so many candidates chasing jobs (45 applicants for each low-skilled job, 10 for high-skilled jobs) that employers can blithely disregard applications (if they choose to do so) from any of the groups (eg the long term unemployed) they consider less attractive.

Money isn't everything, but it does matter.

 

[kerrye]

Thankyou so much for your replies. I have taken something from each of you

I went with Mum for assessment to care home, on Friday. I was seen by an Admiral Nurse beforehand. Did this happen to anyone else, but when an expert explains things, you think you come away with a clear mind about what to do. Then, when you are back with your loved one, everything goes out the window. At present I am, in my head, planning for Mum not to go for respite, or thinking when 4 weeks is up, I will keep her at home. I am living a lie this weekend, as Mum knows nothing. I will take her to the care home before I go to work Tuesday morning, as advised, and visit on Friday. She may be back home before weekend!
I think I am losing the plot a bit, but now as I am explaining the plan to you, I will think of other ways to keep Mum at home, after the 4 weeks. So sad to see residents in Home sleeping in chairs, day time TV on.
Head is all over the place at present. I think of each of your replies, and each has a baring in my life, but what to do?
I hope Mum is 'unmanageable' or has 'challenging behaviour'(unlikely), and then a decision would be made!
Sorry about all this ranting. I may not send Mum to respite care at all. See how mixed up I am?
Thanks for bothering to read this. Anyone else had same experience or is it just me?

 

[angelface]

Please make sure mum goes to respite. I certainly felt bad about putting my aunt into respite, and suspect a lot of other people do as well.

The things is - you need to have a life as well, and respite will be the start of this. Why not ask the staff how your mum gets on. You may find mum is far more content than you expect.

 

[Mufti]

respite

Dear kerrye oh that sounds familiar.I have provisionally booked my partner in for respite in a couple of weeks time after a failed attempt at a weekend away with him - lost flight and was very resentful! Now like you I am planning how and when to tell him, losing my resolve when he has a reasonable day, thinking I won't bother! Knowing I must! All are telling me I need a break after 2 pretty bad years of carrying single handed.I know this is true but am fearful and sad about this step. It is not easy but I need to listen when all our friends are telling me to have a break! Have courage and I will try too. X mufti

 

[Wirralson]

Kerrye,

I'm probably not the best person to comment here, but I have a couple of observations, which reflect what other posters here have said.

First, if you let your mother's dementia take over your life, it will quite possibly crush you. I lost one (nearly two) jobs as a result of the pressure of my mother's dementia and my father's reaction to it, and I'm hanging on to my current one. You have a right to a life and fulfilment, and I'd suggest you think carefully about what priorities will really help your mother, and try and not let her or your own emotions (guilt, pity compassion) manipulate you into an impossible situation. Remember, if you are unemployed, with no cash flow, and so under even more pressure, you may be less able to help. Separating emotions out of the equation and dealing with the situation logically can be very hard, but I'd gently suggest that is what you may need to do if you are to take a workable decision in your mother's best interests.

Also, it does sound as though your mother's condition has progressed to the point where residential care is probably unavoidable, or will soon become so. That can be pretty grim, and very difficult to handle, but you may not have any realistic alternative.

Kind regards

Wirralson

 

[kerrye]

You all are my lifeline these last few days

I took Mum to the Respite Care Home yesterday morning, all your messages and support going round and round in my head. It was a good thing to have. I was very close to not taking her, but I thought about what you all had said, and I am finding ways with the time I have, to do the best for Mum, and look into all avenues.

Now the days seem so long, I have never known so many hours in the day!
I miss her dreadfully, but I am to give her a few days before visiting.
I have learnt some home truths, which are only starting to sink in.
The Admiral nurse spent some time with me last week. She told me Mum's condition is terminal, and that she is at 'The bottom draw' stage. She asked me to think about things.Was it my own fears that made it so difficult for me to let go...Maybe.
Thankyou for your continued help.

 

[garnuft]

Aw, Kerrye, I know that feeling.
I hope when you see your Mum your most dreaded fears will be laid to rest and you manage, when your heart stops aching as much, to relax and find the space in your heart and head to make the next steps, whatever they are. x

 

[kerrye]

Very sad news.Broken hearted.

You all were amazing in giving me help and support with Mum going for Respite Care.
I value your support still.
Poor Mum collapsed in the home after a massive cerebral bleed, and is in a coma now.
I cannot believe that she was in Respite 10 days, and was found slumped in her chair.
I have looked after her 12 years and been with her when she became ill.
I am making myself sick thinking she may have called for me minutes before she was ill.
I am so upset that she was not at home with me when it happened.
I am missing her so much it hurts. She is breathing on her own but has not regained consciousness. I was told it was an amyloid bleed, common in Alzheimers disease.
I am heartbroken.

 

[turbo]

Hello kerry, what very sad news. Poor you and poor mum.

turbo

 

[starryuk]

Oh Kerrye, how terrible... poor you and your poor mum.

Please don't blame yourself. This could have happened at home in a moment you were not there. You could not have anticipated it. You know that, though.

I can understand how your mind is reeling. So sorry. Keep strong, sit and talk to your mum as much as you can. We will all be thinking of you and your mother and hoping/praying for some good news.

Angela x

 

[Saffie]

I have only just been reading this thread and was shocked by your last post.
What a sad thing to have happened especially where it did but sometimes these things just do so please don't feel bad about the respite.
I do hope that your mother is comfortable and that she pulls through.
My thoughts are with you.

 

[garnuft]

Oh Kerrye. Thinking of you and your Mum. x