Full time Carer to my Mother now for 5 years

[KatsWhiskers]

Hello there.
I now live with and am full time Carer to my elderly Mother (88). I moved in with her when she was first diagnosed as having Alzheimers and have now been here almost 5 years - without a break.
She is now at the stage where she is not safe to be left alone in the house.
She is a very private lady - a one off really; she has no friends just one sister of 84 who is deaf. She point blankly refuses to have any help as suggested by both her psychiatrist and her GP. This means that I'm unable to either as she won't have anyone she doesn't know in the house.
As you can imagine I am mentally - physically and emotionally exhausted. My life has been on hold for these past five years and If I don't see a solution - or don't have a break I feel as though it's me thats going to go before her.
I've contacted Social Services who have offered me the help that is available i.e. respite care but Mother has threatened to do all kinds of things if I have anyone here and just becomes angry and violent when I mention it.
I'm constantly verbally abused. I'm called a "You lieing bitch' (totally out of character) every day and told to 'get out of her sight'(because she doesn't remember something that happened recently - she accuses me of making it up !). She has had her hands around my throat; I've had things thrown at me and if looks could kill - I'd be dead. I feel worthless; have lost all confidence and self esteem.
I realise that there will come a time when she won't know who I am - then perhaps is the time to seek help.
What a dreadful disease it is to see one's own parent's personaily change ansd become almost childlike.

Can any of you Carers relate to this - and do you have any suggestions ? Apart from 'hang on in there - as you only have 1 Mum' !?

 

[helen.tomlinson]

Hello KatsWhiskers

You really do need help. I can't stress enough how important your life is too and you need help as soon as possible. What about contacting the Alzheimers Society and asking someone to come and visit you as soon as possible and talk to them away from your mother. The lady that came to see me was invaluable and it was very empowering. You never know till you try!! Don't wait KatsWhiskers, get on the phone and start the ball rolling so that you get some help to bring about the changes that need to take place.

Love and best wishes

Helen

 

[germain]

Hello KatsWhiskers,

Welcome to TP - you'll find lots of support here. There are lot going thro' similar to you and even some who have managed to come out the other side.


My sister and I looked after our Mum for around 5 yers and it brought us to our knees - in the end we had to get really hard with her - yes we did have to treat her like a child and insist on certain things - even tho' she disagreed.


You MUST look after yourself in order to be able to look after your Mum - and for YOU - sometimes I think the dementia sufferer becomes so important that we forget we have a duty to ourselves as well ! The time for you to seek help is NOW and you may have to be extremely firm and strong and impose it on your Mum regardless of the consequences (and prepare to manage them ).


You mentioned Respite - you could try to get your Mum into a secure EMI unit for respite - this would give you a total break- its not always the case that you have to have carers in at home.
Social Services will help with this and you could stress to your Mums GP etc how dire the situation is. Is there a day centre she could go to ?


Does your Mum allow you to have friends in ? You could gradually introduce carers as just your friends.


However, if you don't think any of this would work - and given your Mum's violence - you may have to have her admitted to an assessment unit for a medication review - don't feel guilty if it comes to this - its in both your interests and your Mum wouldn't have any choice in the end.


Don't let this situation go on any longer . When you moved in it was because you wanted to do your best for her - well you can't do it under these circumstances ! Contact everyone you can think of and scream for help at the top of your voice.


It's time for "tough love" -


Just my own opinion - lots of others will be along to help as well

Regards

germain

 

[Suzanna]

hi,

i just wanted to write to say how much respect i have for you caring for your mum the way that you do. It must be very isolating let alone stressfull and upsetting. You said in your post that you feel worthless, and whilst i appreciate how you may feel this way, it must be the farthest thing from the truth ever. To have put your life on hold to care for your mum like you have is priceless, even though she has changed so much and might not be able to tell you anymore.
In terms of practical support, i'm sorry i don't have much to offer, (and i really don't want to use the "just hang in there" line (!)). I think the support services vary quite a bit from area to area but that it's definately worth looking in to what's out there, even if it's just someone to chat to on the other end of the phone.

Hope that today has been one of the 'better ones' and that tomorrow will be a bit better still.

Suzanna

 

[Kate P]

Hello Katswhiskers (great name by the way!)

Well I hope I'm not going to be too blunt here but here goes anyway.

Yes you do only have one mum and you've done admirably by her but you also only have one life. It is personal choice to care for someone full time and I admire you for doing it especially given the difficult circumstances but it's not acceptable for you to have to suffer violence at the hands of your mum because you have chose to be her carer.

Does she have medication? Does she have a CPN? My mum is also quite violent and constantly aggressive and we are trying different medications but to be honest if she continues to escalate in violent behaviour I will be urging my dad to think about an assessment unit as he is as valid a person as my mum and equaly deserves to have a life with dignity and respect.

I hope you find some answers here and I'll be thinking of you - I really hope I haven't offended you by being too blunt.

 

[KatsWhiskers]

Oh golly - have tears running down my face now. A big Thank You to those who responded to my message.

I agree with you 100% - but the point is Mother will not leave her home. She's never been on holiday since my father died in 1963. She lived alone for years until my marriage broke up - and I moved inas thought the most sensible thing to do at the time. She wouldn't even dream of going to stay with her sister who has incidently even offered to come and stay with her.

She hallucinates at night and imagines someone knocking at the front door - so she'll go down and answer it and then not re-lock the door; she insists people are in her bedroom at night - and insists that I meet them; she leaves windows open; she tried to turn a gas fire on but doesn't ignite it so the house is full of gas. I could go on and on but basically I don't even have a proper night's sleep because am on the alert and if i do dose off - I'm soon woken up !!

I love her to bits. At times when she's violent I must admit it upsets me but I could never despise her - because I know that's she hs this wretchesd illness and doesn't realise what she's doing. Then it's like a viscious circle - because she doesn't remember and if I had occasion to mention int (to our GP or her psychiatrist) she then accuses me of total fabrication.

I have contacted Social Services myself to see what help is available and have put it to Mother - very gently that 'someone very nice is coming to the house whilst I go shopping' - but then another tantrum is provoked.

I know fully well that if any attempt is made to remove her and put her into a home - I will never see her again. She will die or she'll never forgive me.

This sounds so unreal I know - but it's fact.
I think if there's two of you i.e. sisters; you husband or partner; family - then it must be easier for at least one of you can escape for an hour or two.

All I can say again is THANK YOU for 'listening'.

God gives us the strength to carry on.

Love and best wishes to all those in similar situations.

 

[KatsWhiskers]

p.s. to previous

Mum doesn't have a CPN - simply because she refuses. I had to take her to our Medical Practice for a blood test - this was carried out by a Nurse - who's first words were "Hello Love - park your bum". I'm afraid to say it wasn't acceptable.

I understand your wanting your Mum to go with dignity etc., but from what I've heard about some of these 'Homes' I don't think that's even considered.

Even I have my opinions on today's Nurses and Homes !

 

[Lynne]

Hi KatsWhiskers

There are some vague similarities between your circumstances and mine. I also look after my Mum, aged 89, living in her house. I have done so full-time for 'only' 2 years, and prior to that lived about 12 miles away & looked after her for about 3 years by coming & going. At that time my Mum was still quite sensible and capable of feeding herself (mostly salads) with the provisions which I brought in for her, although unable to cook, and still able to use the telephone to contact me.

She is now less able - WHICH IS NOT HER FAULT, BUT THE ILLNESS.
I state the obvious because it also applies to YOUR mother and to what I am about to say, which I suspect you will not like.

Your mother has been allowed to turn into a tyrant, making everyone who tries to help her dance to her tune.
I suspect she has always been a dominant parent to you, and the combination of circumstances & disease have made her more so.

I am mentally - physically and emotionally exhausted. My life has been on hold for these past five years and
If I don't see a solution - or don't have a break - I feel as though it's me thats going to go before her

What you say is exactly right. Your own health & ability to cope will break down & then mother will end up in Care whether she "agrees", likes it, or not. Matters may be taken out of your - and her - hands because she has become a danger to herself, to anyone who lives with her, and her neighbours. The time for you to actively seek help is NOW before you do, indeed, end up in a psychiatric ward before your mother does.

There is no 'ideal solution' even for people who are cooperative and easy-going. We have to make compromises and take a chance that things will work out for the best. "Mother won't allow it" and violence on her part towards those who are trying to do their best for her - both family carers & professionals - must not be allowed to escalate. You wouldn't encourage it in a child and in some ways your mother's actions & attitudes have regressed to that of a child. You said it yourself

What a dreadful disease it is to see one's own parent's personality change & become almost childlike.

It's this dreadful disease & NOT HER FAULT, but how many lives are you going to let it ruin?

As for:

but from what I've heard about some of these 'Homes' I don't think that's even considered.

Come on, use your obvious intelligence; please don't believe everything you read in our sensationalist newspapers.
There ARE good Respite care homes, including those run by the local authorities. My Mother is in one now, for her (& my) 1st ever weeks respite. Although she was also a rather solitary and independent person, she is showing every sign of enjoying the social interaction she is able to take part in, and is not in the least unhappy. For the weeks approaching Respite, I turned myself inside-out worrying about how it would be - would she feel abandoned or betrayed, would she be frightened & disturbed by the unfamiliar surroundings etc. etc.
She's FINE. She accepts that I needed a break. I have 1 brother - in Australia! I agree wholeheartedly with you that 'sole carers' have a tough job to do. Sometimes the right course of action is not the easiest; that doesn't make it wrong, just very, very difficult.

I wish you well & hope I haven't caused offence by being blunt.

 

[KatsWhiskers]

Lynnne's response

Hi Lynne

I accept what all you say without offence.

Yes my Mother has always been the dominant one in my family and I suppose losing my Father (who was 20 years older than her) she has made an impression on my life. If only I could stress to you how 'different' she is to other elderly ladies. She doesn't like women's company so never was one for Coffee Mornings or Womens's Institute meetings. She was dreadfully shy as a child apparently. Now not only is she stubborn (as majority of elderly people are) - she's adamant that no one come here to 'her home' univited.

I'm not making excuses for her by any means.

As for Care Homes - the ones run by the NHS have a dreadful reputation here in SE Kent and unless one can afford at least £400 a week for Private Care - ( we hear such terrible stories about these also!) and unless Mum agrees to it which I can't see this happening until she gets to the stage whereas she doesn't have a say.

She's confused; has complete loss of short term memory and I know this is going to worsen. She has other ailments too - heart problems ; arthritis; bad on her legs ...... but she point blanky refuses to accept that she can't be left alone. Tell's me to 'get out' on a daily basis.

I can't leave her in case I come back to the house on fire. Her pshychiatrist tried to explain to her that this could happen and her actual words were " I think that will be the best for everyone !".

She's capable of completing x-word puzzles. These Skeleton ones and the Cryptic ones - not just the easy ones which amazes me and I wonder at times whether she's actually playing on me.

Anyway - I've given up on 'a life' - I'm 62 now and have 2 failed marriages behind me so I hope - although this might sound cruel - I hope that her heart gives out before she get's to the 'Home' stage and that I will have a few years left to make up for the time lost. Hope that doesn't sound selfish or un-caring.

Thanks again

Mary

I

She was one of the lucky ones to be prescribed 'Aricept' but whether it's helping or not I have no idea - as not sure how she would be without it.

 

[citybythesea]

A Big Hug For You

Pardon me for any advice I may give that you have already heard as at times I feel as if I am getting AD.

You need to take a deep breath and realize that YOU are the one taking care of your mother, not her taking care of you. It may be her home but as her caretaker you also have to take a little control. I was lucky to have a happily demented mother....but she was like a clingy ivy to the wall when it ame to her feeling secure.

Over time I worked her thru this by "inviting friends" over. I would put notes to remind her that we had company coming and constantly remind her. The first few times they came we just for american words "hung out" or maybe it would be better to call it "had tea". With each visit I would leave the room for a small amount of time with each time getting longer and longer. I started out by making sure I had the same person come each time and had talked extensively about mom to hewr over the phone.

I know it is hard taking care of an AD patient and yes a home is not for all, but if you choose to take that route you must realize that YOU are the one in control and you must educate yourself as to what can happen. Take time each evening and day to write a journal about your mothers actions, soon you will see a pattern and will be able to react easily. I hope this helps you a little. HUGS for you.

 

[helen.tomlinson]

Dear Mary

You've had five years looking after your mother without a break. It seems that you are maybe doing the "yes, but" thing!
Maybe you can ponder on whether you are as determined for things not to change as your mother!!! I think that sometimes when we don't get a break, things creep up on us without us realising.

Perhaps you can think about the whole thing another way. Instead of thinking of it as changing your mum, think about what you can do to change yourself. You need help. Maybe you can get in touch with someone that can help you to bring about the change that you want to make about yourself. BUT perhaps you will find yourself keep saying "yes, but".

Love and best wishes

Helen

 

[KatsWhiskers]

City_by_the_sea & Helen Tomlinson

Wow another two lovely replies !

Yes - as I said before I did allow myself to be dominated by my mother from an early age. My father was a GP in London and she the typical doctors wife - in those days. Father was devoted to his profession and was such a gentleman. I can remember being able to do his spats up with a little pearly handled buttoner. I have a brother - couple of years older than me - but he's now in hiding very conveniently after assuring our GP that he would enable me to have respite. I don't even have a tele[hone number or an address for him. Apart from his mobile number which he never answers and never rsponds to texts messages - so have given up on him.

I don't feel sorry for myself - I don't really feel anything. I've always enjoyed my own company.

After the constant daily abuse I receive - I don't allow it to upset me now. I've had enough and yes - I do try to be firmer with Mum.

This evening I went in to see her and she was hiding under the bedclothes just like a naughty child would. She said that she'd had an accident with her tablets - and that she'd fallen over and they'd spilled out. I sort out her tablets weekly and have 14 little plastic containers (similar to those that one used to take a film to be developed in) 7 of which are marked A.M and the other 7 P.M.
They were all over her bedroom floor ; all the containers had their tops off. She'd obviously either been checking them; or just being mischevious. I could of called her 'a lying bitch' as she does me - but I counted to 10 and told her that she shouldn't fib to me - especially about having fell over and that she shouldn't interfere with her medication. I can see now that am going to have to hide those now.

It's just mental strain 24/7 - 365 !!

Your idea about inviting people in sounds as though it worked for your Mum. She has never been one for having people in for tea - coffee etc. But I will give it a go if I can pluck up the courage to contact friends that I've lost contact with.

It's a help to be able to express my feelings I must admit and to know that other people are in similar situations and some worse off.

My time to have fun - will come .

Hugggggggggs to you all. Mary

 

[KIM62]

Ive read your comments, and replies. And, love, you need to really think about yourself now. My mother-in-law passed away 11 years ago, she was diagnosed with Alzheimers. Her symtons were the usual memory things. She also had remarkable strength, my sister-in-law was her full time carer and she became too much for her to handle. My husband went to help her one day, and she managed to over power them both. The doctor was called out, and her manner was absolutely not my mother-in-law, she was racist with her words and abusive. Finally, the doctor did the necessary, and against my sister-in-laws wishes, he signed my mother-in-law into a hospital until they could get her under control. A couple of week later, a placement was found for her at a local nursing home. And, there she stayed for nearly 18 month until her passing. My sister-in-law, is now in a nursing home because she has been diagnosed with Vascular Dementia. She lived on her own, but had daily care from myself and my husband, and we were both worn out. She was becoming more and more of a danger to herself...going out in the early hours of the morning knocking on her friends door, getting ready to go shopping at 3am. Phoning us at 1am to see when we was going up. Simple every day things we take for granted, becoming a problem; turning the t.v on, locking and unlocking the door, taking her medication(hiding her medication as we found later),leaving the cooker on, not noticing if its day or night, going into town two or three times a day with a bundle of money in her purse. She was also a stubborn person, and started to get nasty with my husband, but never remembered doing so. Finally, we got social services involved...first she went into respite, even though she was adamant she didn't want to go, and could she come home the next day. As soon as she went, it was a case of trying to stop her going to respite. Every opportunity she had she went. She was on a six week cycle, home 6 week, away 2 week. Then it got to 4 week cycle, until eventually she went in. My sister-in-law has to subsidise herself, as she has over the limit of savings and property. The priority here though, is her personal requirements. It was decided that she needed to reside in a small nursing home, no more than 15 residents, so she gets that personal attention. Now i have told you my lengthy story, the point Im now going to say is; as much as you love your mum, you now have to thin k and take care of yourself. Because if anything happens to you, through wearing yourself out, I can assure you the world will be a whole lot harder to your mum without you in her corner. The priority now is you, YOU TAKE CARE OF YOURSELF - YOU TAKE CARE OF YOUR MUM. Start with the respite, get social services involved. Kick ass if you have to, and remember that if there is something your not happy with, then persist until THEY GET IT RIGHT. And, just before I go what about your own doctor? My husband was 62 when this all started last year, and after suffering two mild strokes, my concern was for him first. His own doctor, upon a routine visit,listen to my husbands concerns and it was he who gave my husband the advice to help us go to the right departments to get some help.
I wish you strength, and I wish you well in what you do, at the end of the day the decision will fall on you with regards to your mums life and how it is to be.

Just briefly, you mentioned that you put your mums pills in boxes. You may need to get the medication well under control, forget the boxes and just give her the medication yourself. This was one of my sister-in-laws problems. So, every morning, afternoon I or hubby made sure she took it. Social services then got someone to call twice a day to administer it. And, because she was hallucinating (guests sat around her house) Halloperidol was prescribed. This actually made her calmer, and sleep alot, until the correct dose was administered.

 

[daughter]

Hi Mary

Over time I worked her thru this by "inviting friends" over.

I believe that citybythesea is saying you could request Carers from the Social Services and pretend they are friends.

It's just mental strain 24/7 - 365 !!

My sister has been caring for our Mum for less than two months and between the two of us (I work part time) we are already mentally exhausted! Perhaps you have had signs of this yourself but have ignored them:

I don't feel sorry for myself - I don't really feel anything.

TP is great and helps in many ways but please do also get some practical help in caring for your Mum (and for you!)

Best wishes,

 

[KatsWhiskers]

Hi 'Daughter'

Yes - have tried that too. I took it upon myself to call Soc Svcs to see what help was available for ME. None of which I was able to put into action without causing confrontation.

Two ladies visited me - Mum came down and ordered them out of her house - me as well.

Can't take that risk again.

Negative I know - but believe me I've tried everything. As I said previously her psychiatrist yesterday infact informed her that she was going to write to her GP about getting SS involved - so maybe her own doctor - whom she has faith in - can persuade her.

It is extremely tiring for you both am sure and my heart goes out to you and everyone else in this situation.

Hugs

Mary

 

[SharonLyons]

Hello Mary,
I very much feel for you. My mum was always very stubborn and bossy and this has now turned into her becoming quite nasty and sarcastic, particularly with me. Although I am her sole carer, I don't live with her (I just couldn't do it, you are a saint) but I go round every day and do "everything" for her. She is even incapable of getting herself a drink of water, she puts a spoon under the tap and drinks off of that! She is adamant that there is nothing wrong with her, she tells me to "give it up" when I try to explain that she needs some help and tells me that I am the one who needs help and she could look after me far better than I look after her!. All extremely hurtful when I am wearing myself out physically, mentally and emotionally trying to make sure she is OK. My mum can have her nice sides and I love her to bits, of course. She enjoys going out even just to Tescos. But.....I know she needs far more help than I can give her and I have finally accepted that. It has taken a long while for me to come to that conclusion but now that she has started putting herself in danger by leaving her back door unlocked at night and letting anybody in (totally opposite to your mum obviously), I would never forgive myself if something happened to her. My mum is a sociable person and likes company and talking to people but as soon as she has had an inkling that the people talking to her (ie. social workers, mental health nurse etc.)are there to help her, she tells them there is no way she going into a home and she tells them to get out and starts being extremely rude.

I know I am rambling on but I want you to know that I understand where you are coming from. Being a sole carer makes all decisions your's and you feel you are responsible for your mum's welfare and happiness. I have now found a home which I really like for my mum and I actually got her to visit a couple of days ago on the pretense that I was visitng a friend who worked there. She enjoyed it and even flirted with some of the men in there (to my horror!!). But she still said, when asked, that she wouldn't like to stay there, even for a night. Well I am afraid she is going to have to because I cannot look after her any more.

She will have her own room with en-suite and I was told that she would be encouraged to mix with the other residents but if she didn't want to she could stay in her room, decorate it how she would like with her own personal touches and have her own TV in there. I'm saying this because if you feel your mum isn't a sociable person, she could actually be very much on her own in a NH if that's what she wanted.

I know how hard it is, believe me, although my situation is no-where near as bad as your's, but I do feel that you are being bullied by your mum and that is just not acceptable. I wish I lived near you because I would visit you as a friend and would know what a person with dementia can be like so it wouldn't upset me as much as someone else. Do you not have a support group near you where you could get the emotional support that you so obviously need. Get in touch with Alzheimers Society, they may be able to point you in the right direction.

Oh Mary, I do so hope you manage to sort something out because you truly deserve it. You have rights and you have the right to a life of your own. You have done what you can and now someone else needs to help you.

My very best wishes to you.
Sharon x

 

[KatsWhiskers]

Sharon

Hello Sharon

Oh I can relate to all that you have said. It sounds as though you're having a pretty rough time of it too. I remember our GP telling me that I have a rough ride ahead - and boy was he right.

Am so glad you've found somewhere you think will suit your Mum and I wish you luck in getting her there. I really do.

It seems that these symptoms i.e. violence - sarcasm - etc are all part and par of the disease an am sure that our Mother's must become so frustrated and because we're there - they take it out on us. I would love to know if they realise just how much they hurt - but I guess they don't.

The bathroom tap ; the windows; the TV remote and several other things are beyond her comprehension now.

Isn't it sad !

Here was I crying out for help yesterday and now I'm sympathising with you. I think we all need someone to talk to who can actually relate to the situation and have actually experienced the same problems.

I wish you all the best

Mary

 

[KatsWhiskers]

A little poem to cheer us all up !

When God made the earth & sky & all the flowers & trees
He then made all the animals & all the birds and bees
And when his work was finished , not one was quite the same
God said "I'll walk this earth of mine and give each one a name"

And so he travelled land & sea & everywhere he went
A little creature followed him until its strength was spent
When all were named upon the earth & in the sky and sea
The little creature said "Dear Lord, there's not one left for me".

The Father smiled & softly said "I've left you 'till the end
I've turned my own name back to front & called you DOG my friend"

 

[helen.tomlinson]

Oh Mary I absolutely love the poem. You seem to be feeling more positive today. Just love the poem.

Helen

 

[daughter]

"so maybe her own doctor - whom she has faith in - can persuade her."

that could well be the case Mary, I do hope so. {{hugs}} back to you