Wits end!!

[saz55]

Hi
My father died suddenly in hospital aged 82 in May this year leaving my mum who has dementia and various other illnesses making her disabled and requiring a lot of care, he coped with this all by himself hardly never complaining, that final min that dad passed mum lost everything she new, her husband of 59yrs, her home everything as she couldn't in no way shape or form look after herself! my husband and I had only moved back up north after he had a serious illness to be nearer family the previous March, and are in the middle of renovating our home, since then mum has come to live with us.......what a mistake this was! I am at my wits end, hardly any sleep as she wants to get up and shouts/screams for me all through the night, sometimes fighting me when I try and get her back to bed, if I don't respond she will undo her stoma spilling it everywhere, she tells me and everyone she cant walk and wants her wheelchair all the time (yes she can walk with her Zimmer) strips her clothes at any opportunity at home or on the rare occasion I can get her out (usually only to hospital appointments and that's an argument) she has a stoma bag and insists on wearing it outside of her clothes and when she thinks she isn't getting the attention she wants will undo it or pick it off leaving a right old mess everywhere day and night!, then she starts this insistent scratching making herself bleed (not good when on warfin) she has had every test/cream/tablets etc. going from gp/hospital and there is nothing wrong just attention seeking! she wont bath or shower or wash her hair, if anyone mentions any symptom's she will copy (shortness of breath etc. although she shouts at the top of her voice) she is horrible and I mean horrible to anyone that visits hence hardly anyone comes anymore, my children have stopped bringing my grandchildren as she is so nasty to them and its breaking my heart! I cant sit and watch tv as she will start scratching in inappropriate places or taking her clothes off or wanting to get her night things on, stoma change or anything but let me watch tv, she wont go out and I cant leave her alone because she is a faller so on the rare occasion I do go out (shopping or to an appointment) my sister inlaw (who is very good and takes what mum throws with a pinch of salt) comes and sits with her, but.....boy do I pay for it when its just the 3 of us! I just don't know what to do anymore, my marriage is under strain (and he is a very good and patient man but this is really putting a strain on him) mum only wants me!!!! I know she is grieving on top of everything but so am I and I have to relive dads final few days over and over again, I was left to sort everything out, dads funeral, her house, their affairs etc with no help whatsoever from my 4 brothers!!!! I am sitting here in tears and the sound of her voice ringing in my ears screaming Hellooooo hellooo, am itchy help me! although for now she is asleep, I start to go to sleep and jump up as I think I can hear her!!! there can be like tonight 4 people in the room with her and she only wanted me who was in the kitchen to take her the loo altho they all offered but the answer was a very sharp and nasty NO, its her job! I am at a loss as to what to do anymore, its getting as though I don't know who I am!!!! and this is just a few samples of what goes on, I hate myself at the moment because I resent her so much and I am so so tired, then the guilt, this isn't my mum at all and I am finding it so hard to accept and love this person she has become..........so much stress!!! oh well here she goes again!!!!

 

[lin1]

Hello Saz55
I am sorry to hear about your Dad please accept my condolences.

Boy are you going through a tough time.
This is not going to be of any help, it sounds to me that your Mum only feels safe with you around, but the situation you are all in cant go on for very much longer!

It goes without saying that you want to do the best by your mum, but in my opinion it shouldn't be at the expense of your own family or marriage

I think you need to do two things , the first one you probably don't want to hear, but I really think you need to seriously consider
Arrange emergency respite care for mum with a view to it becoming permanent, this will give you and your Husband time to recover a little and some time to decide what is best for you both.
Adult social services may be able to help, this is something that I have not had to arrange and I hope others here will be able to help

Contact the Dr/clinic mum is under for her Dementia asap, they may well be able to help also they do need to know how mum is and how you and your family are being affected.
Their may be medication that could help maybe mum needs to go to an assessment unit.

Others will be along later today who will have some good ideas and be able to share their experience, so please keep checking back here
I am not sure where you are, if you are in the uk Admiral Nurses may be able to help
Sadly they are few and far between but they have a National helpline, back in a mo with the link
Here it is
http://www.dementiauk.org/information-support/admiral-nursing-direct/

I must say I agree with Fred on post nu 3

 

[Fred Flintstone]

No place for guilt

Hi
My father died suddenly in hospital aged 82 in May this year leaving my mum who has dementia and various other illnesses making her disabled and requiring a lot of care ...

since then mum has come to live with us.......what a mistake this was! I am at my wits end ...

I hate myself at the moment because I resent her so much and I am so so tired, then the guilt, this isn't my mum at all and I am finding it so hard to accept and love this person she has become..........so much stress!!! oh well here she goes again!!!!

saz55,

You can't carry on living with your mother - your circumstances are simply unendurable. You have no reason to hate yourself. It isn't your mother who is acting and talking any more. What you are witnessing is her disease-ravaged nervous system. If she were to have a brain scan, either CT or MRI, I believe massive change would be evident.

All I can suggest is that you have her transferred to a care home where perhaps heavy medication will make her calmer. Until that takes place, perhaps she can be sedated where she is until she becomes less unbearable. There's no place for guilt here.

You can't carry on like this, saz, no-one can expect it of you. That's all I can think of to say.

Best,
Fred

 

[lin1]

Hi Again

I am wondering if you would find this helpful
It is about compassionate communication with the memory impaired
I must admit it is not an easy act to follow, especially when you are up to your eyes with it all. it also give a little insight
http://forum.alzheimers.org.uk/show...ionate-Communication-with-the-Memory-Impaired

We have lots and lots of factsheets on here. You might find these helpful
http://www.alzheimers.org.uk/site/scripts/services_info.php?serviceID=94
If you want to have a look at some other factsheets , click on Alzheimer's society resources (under the second blue line) and follow the links

 

[saz55]

Thank you Lin & Fred for your replies, I have not long finished scrubbing mums room due to yet another mishap with her stoma bag, settled her (with some reluctance on her part) back in bed, only about 20mins later bang crash wallop.....yes she got up and has now fallen, so off I go to wake my very patient hubby to help me lift her, she seems ok apart from a skin flap on her arm, so now I sit here surrounded by odour de la excrement, feeling guilty for leaving her Zimmer by the bed and am thinking......to be honest I really don't know what I am thinking anymore, just dreading tomorrow and the days weeks after!
Cant help remembering Dads last words to me...look after your mum love!
I have told my hubby I will have a word with our GP later today when he comes to see Mum (thank you both) But I cant help feeling I have failed both Mum & Dad, he looked after her single handed for the last 6yrs, and I cant even manage 6 months!!!

 

[jaymor]

Good morning Saz and welcome to the forum.

You are not letting your Dad down because you are finding it difficult to look after your Mum. Dementia is a disease that makes caring more difficult as time goes by. Your Father cared from the beginning and was probably, by the time of his death coming very close to not being able to cope on his own and would have needed carers coming in.

You are not letting your Mum down either. My husband is in a nursing home and very settled there. He has not known me as his wife for over 4.years but he will allow me to do things for him that he won't let anyone else do. He is bed bound, very little understandable speech. Last week it was very warm and he was fully dressed with his duvet over him pulled right up under his chin. Our daughter wanted to fold it back because he was sweating profusely. He clung onto it as if his life depended on it and a few choice words came from him. I walked over, did the same and he let me take it completely off him and put it on a chair. He even smiled at me. So he is comfortable with me and more compliant which is probably how your Mum is. She has lost the person she felt most safe with and now you have become the person doing the most and she is unsure, the disease is making her unsure and probably feeling very unsafe. Things have changed for her and she is not understanding why things have changed.

Hopefully the doctor will be able to help you, to get you some help as the disease is progressing and the job of caring gets harder. If the doctor mentions the possibility of a care home then again don't think you are letting your Dad or Mum down. The doctor would have said the same to your Dad had he needed to. Caring for your Mum means doing the very best for her and if that means accepting she needs more help than you can provide then doing the best you can means accepting a care home as the best place for her to be. Staff do a shift, most of them a 12 hour one which is long but at the end of the shift they go home, they sleep, they switch off from dementia though bless them, some don't and they come back the next day, fresh and ready to do it all over again. Their week is just 3 days, they are part of a team. Your week is 7 days, 24 hours a day and no days off. There is no way you can give the level of care they can.

If your Mum needs this level accept it, you won't stop caring, you just care in a different way. The not so nice bits will be done by the staff, you will do the nice bits, sitting and chatting, taking her out into the garden or even out of the care home if it is ok to do so. You will have quality time with her but you will be watching out for her and making sure the care she gets is as you want it to be and you will have time to yourself and time for your family which is how it should be.

If care in the home is offered then accept that. mum might not be happy but you need help. If you breakdown who is going to do the caring? You need help, this is now not a job that one person alone can do and no one should expect you to do it, even your Mum would agree if this dreadful disease had not robbed her of her ability to understand.

I am so sorry you have needed to come to the forum but you will find so much understanding here, support and help that will help you and hopefully make it just that little bit easier for you.

Take care,

Jay

 

[Izzy]

Good morning Saz

I can only echo what others have said so far. It is clear that you can't continue with your mother living with you.

If your mother would be self funding then you can begin to consider a care home right away. If she isn't then you need to contact the social work department. I don't know if the Social Work Department is already involved with your mum or not. If so I would phone her social worker as a matter of urgency. If not then you should phone the department and ask for an urgent assessment of needs. You need to emphasise that this is a vulnerable person who is essentially at risk (re falls etc) and that you can no longer cope. You are heading for carer breakdown and you needs to also let the SW department know that.

Hard though it is you need to take action soon. You and your family are suffering and your mum is clearly suffering too. You have worked hard and done your best to deal with her suffering but I think it's now time to say 'enough'.

Take care.

 

[lil50]

Dear Saz55
I read the posts on here every day and when I am especially troubled I post myself. I don't reply too often because there are many people on here who are so much more experienced and eloquent than I am.
But several things in your message resonated with me.
My Dad died very suddenly 2 years ago leaving my Mum who had only just been diagnosed. I promised my Dad that we would take care of Mum. My brother and his wife and my husband and I shared shifts looking after Mum in her own house. I shall never know how my Dad managed alone and I feel so sad that I never really understood what he endured. Neither did I fully understand the grief Mum was suffering, it was so muddled up with the disease and the anxiety.
After six months we had to admit defeat. Mum has carers visit 4 times a day and family visit most days of the week. Medication has improved her anxiety but I hate leaving her alone in her house.
Dad did say before he died that if it became necessary Mum would have to go into a home. A huge thing for him to say, he would have done anything for her.
I too have fought grief and guilt but I know that my parents would have wanted me to be happy. I do what I can for Mum while still trying to have a life for myself. I know I would not want any of my children to go through this for me.
Please try not to feel you have failed your Dad or Mum. It sounds to me like you are amazing, you are doing much better than I could have managed.
Someone told me last week that the best advice they were ever given was to be kind to yourself.
Please be kind to yourself

 

[Tin]

I don't really see it as defeat or a broken promise to consider looking elsewhere for help with your mother, you are still looking after her and doing the best you can. you and your father would have had no idea how ill your mother would get. I made the same promise to my dad 4 years ago before mum became ill, when he said to me"look after your mum" I truly believe he was trusting in my judgement to do the best I can for her and that includes if and when the time comes, to look for the best possible care home. Mum has been living with me for 8 months now and we have had a time, but not a crisis like yours. If a carehome is not want you want for your mother, then get outside help to come to you. Night time in my house is now a lot easier since mum started taking a sleeping pill, but we have to be very careful how many nights she takes this, At least I now know that I will get a couple of nights sleep! Emergency respite could help you see beyond all of this. I hope this morning things are ok and that you start making those phone calls. Take care.

 

[saz55]

Thank you all so very much for your help and advice, and getting me through the night. you all have made things a lot clearer and just knowing that I am not the only one going through this dreadful time means a lot, I have made an appointment with my GP so I can talk privately and openly, fingers crossed he will help me do what's best for Mum and on reflection (although I am shattered) the best place for her would be a care/nursing home as she now needs a lot more care than I can give her, and I need/want to save my marriage and get my family back. I also know that it isn't going to be easy, I don't know how to go about getting her into a place and she will not want to go at all so god only knows how I will deal with that! she will also be a self funder (for a while anyway) so hopefully it will be a bit easier (hahaha if only) I have told my brothers of my decision (bad daughter that I am) and not surprising they are up in arms, but my hubby (bless him) has hopefully put them in their place! I only wish (and this sounds awful and I hate saying it) that she was going today! (yes guys you are all right..... thank you) the situation is unbearable but for some reason the fog is clearing just a bit, the guilt I feel..... well.......I will just have to live with that and hope that eventually people will stop blaming me for doing what I have to do! I love my mum the world, but this person in my home isn't anything at all like the loving mum we all knew and I honestly since last may have come to resent her big time, I just cannot cope, but no one understood what it is like (and getting progressively worse)......only you guys, so from the bottom of my heart a huge huge THANK YOU (for making me see sense) Funny how chatting to strangers makes you see! (and I mean that in the nicest possible way) if it wernt for you guys last night I probs would have just walked out the door and not looked back X

 

[loveahug]

Hi saz

You are in an impossibly difficult phase at the moment but it will get better! When your mum falls you should not pick her up, if she pulls you down on top of her you could both get very hurt, call the paramedics to assess her and pick her up. One of the side effects of doing this is that she will be on the services' radar. You should also call the emergency adult care team and cry down the phone that you can't do this any more and you need emergency respite.. If any of your family kick up about what you are doing tall them that you are packing a bag for her, please would they come and fetch her and when they have everything in hand and your mum is quiet and peaceful you will come over for some lessons

We all make promises to our parents, I made the same promise to my father and I am looking after mum, by managing her care plan, taking her to appointments, making sure she is as safe and well as I can manage BUT it does not mean having her to live with me.

I think you and your husband are complete saints to cope with what is happening at the moment. Get rid of the guilt monster sitting on your shoulder and go forward to a happier situation.

Much love and hugs x

 

[Owly]

Saz, if your Mum had cancer, you'd feel no shame/guilt in organising whatever was needed. You wouldn't try to do it all yourself. Well, your Mum has something every bit as bad as that, a serious mental illness which is only going to get worse. If you don't want the dementia-demon to get hold of you too, you do need to be very firm with every professional that you speak to, that you cannot do this any more. You would end up mentally ill yourself, if only from the sleepless nights. Healthy brains need sleep. Your Dad would not want you to be at risk of getting ill too.

Never mind your brothers. If they (and their wives!! ) do not want to have Mum to live with them, then their opinion is worthless. Actually, one answer to your problem would be to drive her over to one of them, and simply leave her with them. You'd see how quickly they would call an ambulance.

It seems that she would be best off going to hospital anyway, to be on an "assessment ward" where they can see exactly what all the problems are, and from there a care plan involving a care or nursing home would be organised. It sounds as if her needs are complex and it would be impossible for you to work out which home would be best suited for her. She needs a professional assessment.

So, if the doctor or Social Services (if you ring them) are not inclined to act immediately, then call an ambulance next time she falls down and tell the paramedics that this is happening continuously and you just cannot get her up any more (make sure hubby is out of the house when they come!) They'll probably take her off to A&E and it will all proceed from there....

 

[Witzend]

saz55,

You can't carry on living with your mother - your circumstances are simply unendurable. You have no reason to hate yourself. It isn't your mother who is acting and talking any more. What you are witnessing is her disease-ravaged nervous system. If she were to have a brain scan, either CT or MRI, I believe massive change would be evident.

All I can suggest is that you have her transferred to a care home where perhaps heavy medication will make her calmer. Until that takes place, perhaps she can be sedated where she is until she becomes less unbearable. There's no place for guilt here.

You can't carry on like this, saz, no-one can expect it of you. That's all I can think of to say.

Best,
Fred

Ditto to all that, 100%.

This is so very hard for you - you have all my sympathy. Sadly there does often come a point where dementia and anything like a normal family life simply aren't compatible any more. It is nobody"s fault and it doesn't mean you haven't tried hard enough, or don't care enough. Tell your GP and social services and anyone else that you simply cannot go on. And don't let them fob you off. I know it sounds drastic but someone on here told SS (after they would not act and she was also at her wits' end) that if they did not put her relative into residential care she would take her to A and E and leave her there. And they finally acted.

By all accounts if SS think you will go on coping, they will often be only too happy to let you. You will have to make it crystal clear that you can't, and won't.

All the best.

 

[HelenInBC]

Dear saz55. My mother recently moved into a care home (just last week) What I have learned since she moved in is this: They can provide much better and safer care than we could at home. We can still offer her love, attention and support but now we can also care for ourselves and nuture the other relationships in our lives.
If your mother were well, do you think she would want you to be suffering under the burden of her care like this? I know as a mother that I would NOT want my children to suffer. I have already told them I don't want them to try to care for me at home if I (heaven forbid!) ever develop a kind of dementia.

Please, think about the idea of finding a safe, comfortable place of care for your mother so you can reclaim your life. I used to think it was like giving up on my mom, but now I realize I am being kinder to her and offering her a better life this way.

 

[saz55]

Thank you everyone you have all been so kind and have given me so much needed support and advice (which I am taking) you have shown me that there is hope for me and my family if not for my mum, you have explained an awful lot and now it is starting to make sense instead of being just a jumbled mess in my head, I can still hear mum shouting for me in my mind even though she isn't but I expect that will subside (I hope so anyway), I have today seen the GP who is making an emergency referral to get mum assessed for her current needs and also gave me some anti depressants, the referral may take a few days I think but she has given me some help/crisis numbers to call in the meantime if things get too bad again, I have also had a heart to heart with my hubby and we have both decided that a CH/NH is the best place for mum at this time as I cant go on as I have been trying to do, I know this wont happen overnight but I am hoping and I will stay on the case that it will happen very soon, and yes next time she falls etc I WILL call for an ambulance no matter what and have her admitted, but in the mean time the GP (she was brilliant) has given me some sleeping tabs for mum only mild ones but fingers crossed they will do the job at least for a day or two so I can get some rest to be able to take on my brothers and their families, if they don't understand I will do as advised and drop her off at one of their houses (and I don't care if they have room or not) I hit rock bottom last night and I know I still have a long way to go but at least now I know thanks to you guys I will not be walking this road alone.....Thank you xxx

 

[Izzy]

I'm glad you have a supportive GP. It sounds as if you have things in place in your mind. Wishing you all the best for making these things happen. x

 

[spuddle]

Hi
My father died suddenly in hospital aged 82 in May this year leaving my mum who has dementia and various other illnesses making her disabled and requiring a lot of care, he coped with this all by himself hardly never complaining, that final min that dad passed mum lost everything she new, her husband of 59yrs, her home everything as she couldn't in no way shape or form look after herself! my husband and I had only moved back up north after he had a serious illness to be nearer family the previous March, and are in the middle of renovating our home, since then mum has come to live with us.......what a mistake this was! I am at my wits end, hardly any sleep as she wants to get up and shouts/screams for me all through the night, sometimes fighting me when I try and get her back to bed, if I don't respond she will undo her stoma spilling it everywhere, she tells me and everyone she cant walk and wants her wheelchair all the time (yes she can walk with her Zimmer) strips her clothes at any opportunity at home or on the rare occasion I can get her out (usually only to hospital appointments and that's an argument) she has a stoma bag and insists on wearing it outside of her clothes and when she thinks she isn't getting the attention she wants will undo it or pick it off leaving a right old mess everywhere day and night!, then she starts this insistent scratching making herself bleed (not good when on warfin) she has had every test/cream/tablets etc. going from gp/hospital and there is nothing wrong just attention seeking! she wont bath or shower or wash her hair, if anyone mentions any symptom's she will copy (shortness of breath etc. although she shouts at the top of her voice) she is horrible and I mean horrible to anyone that visits hence hardly anyone comes anymore, my children have stopped bringing my grandchildren as she is so nasty to them and its breaking my heart! I cant sit and watch tv as she will start scratching in inappropriate places or taking her clothes off or wanting to get her night things on, stoma change or anything but let me watch tv, she wont go out and I cant leave her alone because she is a faller so on the rare occasion I do go out (shopping or to an appointment) my sister inlaw (who is very good and takes what mum throws with a pinch of salt) comes and sits with her, but.....boy do I pay for it when its just the 3 of us! I just don't know what to do anymore, my marriage is under strain (and he is a very good and patient man but this is really putting a strain on him) mum only wants me!!!! I know she is grieving on top of everything but so am I and I have to relive dads final few days over and over again, I was left to sort everything out, dads funeral, her house, their affairs etc with no help whatsoever from my 4 brothers!!!! I am sitting here in tears and the sound of her voice ringing in my ears screaming Hellooooo hellooo, am itchy help me! although for now she is asleep, I start to go to sleep and jump up as I think I can hear her!!! there can be like tonight 4 people in the room with her and she only wanted me who was in the kitchen to take her the loo altho they all offered but the answer was a very sharp and nasty NO, its her job! I am at a loss as to what to do anymore, its getting as though I don't know who I am!!!! and this is just a few samples of what goes on, I hate myself at the moment because I resent her so much and I am so so tired, then the guilt, this isn't my mum at all and I am finding it so hard to accept and love this person she has become..........so much stress!!! oh well here she goes again!!!!

MY DARLING I DONT KNOW WHAT TO SAY;.. I IAM NEW HERE. I HAVE HALF A CLUE HOW YOU FEEL. I FEEL YOUR EVERY WORD., I FEEL EVERYTHING YOUR ARE SAYING. . THE LAST SENTENCE YOU SAY . YOU ARE TIRED YOUR FEEL GUILTY . AND N0., NO NO. THIS IS NOT YOUR MUM . THIS IS YOUR MUM WITH A DISEASE. ALZIEMERS. . . I am also struggling and don't come to this site., I FEEL WE COULD MAYBE TALK.... Polly x

 

[pitstop]

First of all, stop feeling guilty.
Second, your mum as you knew her has gone. What you now have to deal with is the effects of dementia on someone you once knew and still love. The care your mother now needs is of a trained, skilled and professional sort that you and your family are incapable of providing. You need to contact your GP, on your own behalf as unable to cope with this any longer and you heed to contact the Adult Services department of your local council for an assessment of your mother's needs.
This is a hard road to travel - don't make it harder on yourself by trying to walk it alone. Good luck.

 

[dottyd]

The time has come to let go Saz.

It's the kindest thing to do.

 

[saz55]

Yet another sleepless night! cant walk, cant move, it hurts, cant breath, want to get up, stoma hurts change it ........ so on and so on............. on top of it all my bro (who is all so disabled by a stroke) fell and has been admitted to hospital with a bleed on his brain and a fractured eye socket (yes its up to me to do the running round/ visiting as he is divorced and his adult children basically said crack on not bothered!) I am still waiting for ss to come do an assessment on mum with a view to nh, am still at my wits end and not functioning very well at all at the mo, just cant help wondering when all this will stop!! I actually managed to get to bed for 20 mins last night but during that time the bloody bed slat decided to break, my hubby thought I had gone mad as I was laughing hysterically desending into racking sobs! he just held me tight and let me cry till we heard Helloooooo, ahhhhhh, I cant Move, HELLOOOOOOO followed by a lot of moaning and groaning. I am at the mo (its now the norm to be honest) operating on auto pilot craving sleep and feeling absolutely dreadful health wise, your comments and advice have been brilliant but it takes courage to act on some of them like calling 999 etc courage and energy I haven't got at the mo, yes its finally ground me down and burnt me out totally, so for now its yes mum no mum ok mum coming mum, here we go again........... yes mum coming!