Question or maybe just a vent

[Peekay]

Simple Question or maybe just a rant to let off steam.

How do people cope with this terrible disease. How do people rationalise and deal with the guilt of wishing that their mother would pass away peacefully. I say this in the context that my mothers spirit has already gone and all that remains is a hollow shell that is vindictive, unloving, vicious, argumentative, confused, apathetic, unhappy and obviously scared. I feel like a very bad person thinking this way.

Context. My mother has Alzheimer’s in her mid 80s lives in sheltered accommodation being cared for by my dad in his late 80s. My dad is pretty much deaf and has very poor eyesight. My mum was hospitalised 3 years ago for an infection and I took the opportunity to discuss with them the benefits of moving closer to me so that I could help. This happened about 2 years ago and they now live about half a mile away.

I help as much as I can, given that I have three kids of my own, two have their own problems (registered blind). I pop in to see my parents almost every day for a cup of tea during week days, and I cook their dinner during the weekends. I do all their shopping, and have POA to look after their finances. My wife’s mother also has Alzheimer’s, which obviously stresses her out. Everyone depends on me and sometimes things feel a little desperate.

Social services in my experience have been about as useful as a chocolate teapot. The first thing they asked was about my parents finances, and once they had established that my parents had over £24k (individually), advised that we were on our own. We haven’t heard from them since and have just been left to deal with the declining situation alone.

I have particular questions.

1. What is the best way to deal with someone who will not believe anything you tell them and who seems to take the opposite view on just about everything. I’ve tried being firm, I’ve tried being soft, nothing works.
2. My mother demands to see a Doctor every morning when there is nothing wrong, except for her being old and less able than she used to be. She complains that she’s tired and cannot get about as she used to. She broke her hip 4 years ago, so it’s not surprising. However, in her mind she never broke her hip, but she believes that there is something seriously wrong and we are preventing her seeing a doctor. My dad has called the doctor so many times, and the doctor has put her mind at rest. However a few days later she denies that a doctor has been.
3. I’m being accused of stealing all her money, and l have apparently taken her house. She is convinced that she owned my house before she moved into her new accommodation and wants it back.
4. She wants to move back into her old house. (My house, not her old house, she can’t even remember where her old house is).
5. I’m being accused of poisoning her as I fill her tablet pots every week. If I didn’t she would mix them up and take the wrong ones and amount.
6. I’m being accused of conspiracy and trying to put her in a home.

I have an older brother, but he’s useless and they haven’t seen him in two years, he never contacts them.

Basically, I feel like my head is about to explode. I’m a pretty logical person, and I think this is my problem as there is no logic to this disease and I simply do not know what is best. To be hard, to be soft, argue, don’t argue, address matters, deflect matters. I’ve tried it all and nothing works.

No logic, no respite and no light at the end of the tunnel. A situation that is getting worse, and more painful and upsetting as time goes on. I’m doing my best but it’s just not good enough.

In a nut shell, how do people cope. Despite doing all that you can to help, only to be accused of theft, conspiracy, poisoning, lying and just about every other unsavoury thing under the sun. Mothers are supposed to love you, protect you, not despise and hate you.

My dad, bless him, was in tears today.

This bloody disease takes no prisoners.

Sorry, End of rant.

 

[Donkeyshere]

Simple Question or maybe just a rant to let off steam.

How do people cope with this terrible disease. How do people rationalise and deal with the guilt of wishing that their mother would pass away peacefully. I say this in the context that my mothers spirit has already gone and all that remains is a hollow shell that is vindictive, unloving, vicious, argumentative, confused, apathetic, unhappy and obviously scared. I feel like a very bad person thinking this way.

Context. My mother has Alzheimer’s in her mid 80s lives in sheltered accommodation being cared for by my dad in his late 80s. My dad is pretty much deaf and has very poor eyesight. My mum was hospitalised 3 years ago for an infection and I took the opportunity to discuss with them the benefits of moving closer to me so that I could help. This happened about 2 years ago and they now live about half a mile away.

I help as much as I can, given that I have three kids of my own, two have their own problems (registered blind). I pop in to see my parents almost every day for a cup of tea during week days, and I cook their dinner during the weekends. I do all their shopping, and have POA to look after their finances. My wife’s mother also has Alzheimer’s, which obviously stresses her out. Everyone depends on me and sometimes things feel a little desperate.

Social services in my experience have been about as useful as a chocolate teapot. The first thing they asked was about my parents finances, and once they had established that my parents had over £24k (individually), advised that we were on our own. We haven’t heard from them since and have just been left to deal with the declining situation alone.

I have particular questions.

1. What is the best way to deal with someone who will not believe anything you tell them and who seems to take the opposite view on just about everything. I’ve tried being firm, I’ve tried being soft, nothing works.
2. My mother demands to see a Doctor every morning when there is nothing wrong, except for her being old and less able than she used to be. She complains that she’s tired and cannot get about as she used to. She broke her hip 4 years ago, so it’s not surprising. However, in her mind she never broke her hip, but she believes that there is something seriously wrong and we are preventing her seeing a doctor. My dad has called the doctor so many times, and the doctor has put her mind at rest. However a few days later she denies that a doctor has been.
3. I’m being accused of stealing all her money, and l have apparently taken her house. She is convinced that she owned my house before she moved into her new accommodation and wants it back.
4. She wants to move back into her old house. (My house, not her old house, she can’t even remember where her old house is).
5. I’m being accused of poisoning her as I fill her tablet pots every week. If I didn’t she would mix them up and take the wrong ones and amount.
6. I’m being accused of conspiracy and trying to put her in a home.

I have an older brother, but he’s useless and they haven’t seen him in two years, he never contacts them.

Basically, I feel like my head is about to explode. I’m a pretty logical person, and I think this is my problem as there is no logic to this disease and I simply do not know what is best. To be hard, to be soft, argue, don’t argue, address matters, deflect matters. I’ve tried it all and nothing works.

No logic, no respite and no light at the end of the tunnel. A situation that is getting worse, and more painful and upsetting as time goes on. I’m doing my best but it’s just not good enough.

In a nut shell, how do people cope. Despite doing all that you can to help, only to be accused of theft, conspiracy, poisoning, lying and just about every other unsavoury thing under the sun. Mothers are supposed to love you, protect you, not despise and hate you.

My dad, bless him, was in tears today.

This bloody disease takes no prisoners.

Sorry, End of rant.

 

[Donkeyshere]

Hi I do sympathise I have just posted about my resentment so I completely understand. By the sounds of things you have done amazingly well so far, don't let anyone tell you otherwise. I have mental health issues and the situations any of us we are in does not help, mental health or just health issues aside. Have you thought of seeing a counsellor or someone outside of the whole situation - it may help to put things into perspective as you may feel that one problem that usually is small becomes a massive mountain. Rants completely acceptable - I've had a few about the person I care for! Take care

 

[karaokePete]

Hello @Peekay, you are welcome here and I hope you find the forum to be a friendly and supportive place.

Caring for a person with dementia is physically demanding and an emotional roller coaster so I empathise with you. My wife is also someone who would like to go to the GP every 5 minutes about the most trivial of things and that's difficult to handle. I feel that it can be a symptom of anxiety and this issue improved with my wife when I pressed for medication for anxiety.

On the communication front, please try not to reason as the ability to reason can disappear with dementia, as can memory of what has been said. There is a thread with a lot of good tips that can be reached by clicking this link https://forum.alzheimers.org.uk/threads/compassionate-communication-with-the-memory-impaired.30801/

Do take a good look around the site as it is a goldmine for information. When I first joined I read old threads for information but then found the AS Publications list and the page where a post code search can be done to check for support services in ones own area. If you are interested in these, clicking the following links will take you there

https://www.alzheimers.org.uk/get-support/publications-factsheets-full-list

https://www.alzheimers.org.uk/find-support-near-you

You will see that there are Factsheets that will help with things like getting care needs assessments, deciding the level of care required and sorting out useful things like Wills, Power of Attorney etc., as well as covering issues like anxiety.

Now that you have found us I hope you will keep posting as the membership has vast collective knowledge and experience.

 

[Rosalind297]

I am so so sorry that you are having such an horrendous time. I honestly don’t believe that each one of us hasn’t, at some time, wished for a quick and peaceful release from the nightmare that we all live, with the death of the PWD we care for. I know I have. A part of the frustration and depression of our situation is that we have no idea how long it is going to go on for.

We were told by the local social services that we would get no support from them as my mother’s savings were well above the threshold and because they were already so stretched so I think that is a fairly common experience.

I am 63 but my mother can still push buttons that make me feel like an 8 year old who wants to stamp her foot and scream “It’s not FAIR”. It takes a lot of self control and practice not to react negatively to the provocation. Only you can work out your own effective coping mechanisms.


Is there any way you could get your mother into a care home? If only for a few weeks as respite for both you and your poor dear father? It is far easier for non-family members to deal with the behaviours that your mother is displaying as they are professionals, they have seen it all before. I know that it is not easy to place your loved one into a strange environment but she may actually respond positively to being with other people who are on the same journey as her. She may even ask to stay there if it is a successful “holiday”. You must look after yourself and your father as neither of you will be able to help your mother if you make yourselves ill.

I suppose all I can really say is, I empathise with your situation even if I can’t offer practical advice. Just know that one of these days you will find release from the nightmare and I hope that, when that happens, you remember your mother as she was before this vile disease robbed her of herself.

 

[canary]

Oh boy, do I remember this stage. My mum had Alzheimers and it came as a complete shock to me. The accusations with their complete lack of logic were totally bewildering.

Im sure other people will be on with hints but Ill try and give you a few pointers.

Are you trying to reason with your mum and offer explanations? It will never work because they have lost the ability to reason. Have you come across Compassionate Communication? Its not a general panacea and its not easy to do but can help a lot https://forum.alzheimers.org.uk/thr...n-with-the-memory-impaired.30801/#post-413710
When she is demanding something that it is impossible to do, you have to resort to "love lies" - ie tell her something that will pacify her in the moment. Perhaps you can tell her that you have phoned the GP and he is going to phone back (in the meanwhile perhaps she might like breakfast)

Accusations of stealing are so common its almost diagnostic and is really hard to deal with. A useful phrase (said in a neutral manner) is "Im sorry you think that" Saying that you have stolen her home is linked to the next problem of her wanting to "go home". This is also almost universal. The "home" they want to go to is actually a state of mind - they want to go somewhere which is a place of safety and they can escape the confusion of dementia. Usually this is a childhood home, but your mum has latched on to your house. Try asking her (when she is not in your house) what her home is like - the results could be illuminating. Mum used to think that if she went somewhere else then she would leave behind all the problems that her dementia had created. She did not realise that she was the source of them all.

Many people with dementia are vaguely aware that something is wrong with them, but do not understand what it is (and you cant explain it to them as they wont accept it) so they often complain of being ill, poorly or being poisoned. Can you speak to her GP and get her tablets dispensed in dossette form where all the pills to be taken at one time are put together in a blister pack?

Im sorry that Social Services have left you high and dry as it certainly sounds like you need some help. What sort of things would help? I would suggest getting a carer in to give your mum her tablets. If your dad is having trouble getting her to was and dress this might be something else that the carer could do. You can contact a company that provide care at home for visits on your own, but Im annoyed that the SW didnt do a needs assessment as everyone is allowed to have one - they should only be looking at finances after her needs have been identified. You could request that this is done, but they may not be very quick and you would probably have to chase it up. There are also things around like dementia clubs, coffee mornings and befrienders that could give you and your dad a break.

If her agitation is very bad there is medication that can help calm her down - speak to her GP about this.

 

[Sirena]

I completely understand your frustration with the situation. Such a thankless task and so draining.

You've had great advice from the other posters. The one point where i disagree with Canary is that I would not bother with an SS needs assessment. My mother is self funding and had two assessments from SS but they were of no help, and I had to wait so long the second time around that I ended up organising care myself in the interim.

If you would like to arrange care you can contact a care agency, they will send a senior member of staff to do an assessment, and then arrange the required care. I found an agency by googling 'dementia care at home' and the location. In London, the hourly cost was £22 an hour (£24 at weekends).

I suspect the problem you could have is getting your mother to agree to accept the care, or even let them in. Would she be more amenable if you said the care was for your father? That is the only way my grandmother (who had dementia) would let carers in - to help my grandfather who had mobility problems. While the carer was there, she helped both.

 

[myss]

Hi @Peekay Welcome to the forum. As mentioned above, it's fair to say most if not all of us have been through most of the situations you describe. I too have wished for a quick release for my dad, the reason why is eloquently put it in your first post - the person I care for is not him, it's just a shell of him. I sat there, eyes in my tears, watching him the other day trying to untangle what looked like a ball of string from around his hands. It was all in his mind, poor thing.

I haven't even bothered with the social services as I know they will say my dad is over the financial threshold, but thankfully there's a few of my family members who also help out and we also have a couple independent carers for those times we can't be there.

How do I deal with it all? There is no quick or single answer to that apart from 'trying my best'. It really all depends on what mood he's in that hour, that day, etc. Generally I try to be 'soft' but as my dad appears to be losing a lot of his abilities, sometimes verbal direction/information doesn't work some of the time, and I then have to physically encourage instead. But I'm no saint either and can get thing wrong, I'm human after all.

As others said in regards to accusations, don't try to reason or take it to heart. It's not your mum being like that, it's the dementia. There's also a few of us that must have heard the 'going home, where's home, whose home is it, etc' too. Unfortunately you have to just agree or nod nonchalantly like you know what they're talking about.

Take some time to read through the forums, use the search at the top of the page using some phrases used in your questions to get more of an idea of people's experiences of them i.e accusations, arguing, trying my best, etc.

 

[the fairysolaris]

I may be wrong ( I often am LOL) but wot the **** I think what matters is I care enough to give an answer

We are complex beings living in a complex world , so the situations we struggle to cope with rarely stem from a simple problem to which there is a simple solution . You will find no end of sympathy here for your situation ( no need to ever feel like your the only one going through this) .

Because every case is different the giving of advice can be fraught, filled with random heartfelt wish to help .

People can however tell you what they found helpful in their particular situation ( so you need never be short of ideas to try ) there is also a wealth of help regards how the “processes” of care attempt to work ( or NOT bites lip) and abundant references to the befuddlement of laws and bureaucracy its possible to crack open your skull on if you hit a wall........... so if its any of the above you need … there's plenty of help... you are not alone!

BUT THE LODGIC OF IT ALL !! ….... well you might as well ask for the logic of what it is to be an “intelligent “ life form..... if I could give you that I wouldn't be sitting here typing it .. I'd have published and be revelling in the isolation of my own tropical idyll. …( ho hum dreams and sighs)

That said.... I believe that life's challenges are a mix of internal reasoning(coping of mind and heart and practical application (despite it all your doing the best you can)

I think its very important to find internal reasoning!! it helps to lessen the damage of prolonged grieving(that which is suffered without relief or closure)....deal with the bitterness ,disappointment and anger left in us by the authorities . If we can't find a way to cope with the above . When the time comes to say our final good byes( we must all die) ….. what will we be left with ….relief and sad memories to carry for ever...........and they ….they are robbed of the chance to have friends and family celebrate their life having been lived.

For some maybe its Gods will.... and they reason it that way .

My own internal reasoning has its roots buried in the colder soil of evolution , the universe and everything.

I have found MY logic of it all...... NO I don't like it …but YES I cope better with it .
Anyway nurse say it time for my medication(smiles)



the fairy

 

[Sam Luvit]

Hi @Peekay

Rant away, it’s a great pressure release. I did it a lot. Also read old threads. Ann Mac’s How Bizarre was an eye opener of what I might expect. Not everything happened, but when similarities appeared, I had a clue as to what to do

Many of us wish for a peaceful end. We watch someone we love change into someone we don’t recognise. Some changes are better (my mum became softer), however, she also returned to other behaviours You are not a bad person to wish for release. The release is for her, not you. There is no cure & the progression is not pleasant for anyone.

I naively thought SS would be helpful. On the second assessment I just bluntly told them she had more savings than would qualify for help & declined to put myself through the trauma of completing the forms. I handed the assessor a large file with all the info & told her to help herself. That felt good In this fight, you take what you can in terms of satisfaction. This was after I had figured out that as a self funded, Mum was on her own & ASC wouldn’t help unless I stamped my feet

When you need help, as you will, use these two phrases ..

The duty of care rests with you, not me
She is a vulnerable adult

Nothing else works. Well, crying works. Cry to your GP. Tell your GP you can’t cope & cry. That gets some response as they then worry about Carer Breakdown. It’s your get out of jail free card for when you want to scream at someone

Do get in touch with ASC & Caring for the Carers. Ask them for a referral for a befriender. The waiting list will be about 3 months (chase them as you could find you drop off the list). This is a free service. It’s three hours once a week. Not a lot, but by the time it’s sorted, three hours is a lifetime, or it was to me. Someone will come & sit with your mum, meaning your dad can go out for a walk, take a long bath, visit a neighbour, or whatever he wants to do to have a proper break. I’d drive to the seafront & sit in the car just to get out

Tell your mum it’s for you, or your dad. It’s so you know she is safe while you go out to shop or whatever.

I also got a cleaner in, “for me” not her. It meant there was one less thing for me to do & that she had company while I went shopping, or just visited a friend

Have a search for local day centres. Hopefully you will find something that she may like. Some care homes do a lunchtime meeting, your parents could go together, have lunch & be around other people, or your mum could go solo & your dad have a break

Have a look at services local to you, it’s somewhere in the home page, Peer Support. You put in your postcode & it will give a list. It’s for you, your dad etc. It’s a chance to meet with others in the same situation. You might find it helpful & it’s only once a month

Your questions ...

1. There is no arguing with dementia. It doesn’t matter how logical you are. You have to step into their world. I know it’s hard. But you can’t argue, it doesn’t work. Try not to say “no” or “I told you, don’t you remember”, because no, she doesn’t remember & you saying no just makes it worse

It’s not so much disbelieving you, as knowing something is wrong, but not what ... so you must be hiding the truth. Deflect as much as you can. Don’t react as emotion is remembered more than the conversation.

2. I need to see the doctor. She knows something is wrong, but not what. A doctor will sort it out. You are lucky to have a good one that will try to help. Not all of them will. Try saying you’ve put in a call & are waiting for a call back. I often followed that with the distraction of tea or cake. Cake mostly as she forgot about the doctor for a while.

3. Accusations. These are common. Money, houses, jewellery, all stolen. As calmly as you can, with as little detail as possible, tell her she has plenty of money, it’s all in the bank. This is your home & you will look for the missing jewellery, books, etc, after a nice piece of cake, tomorrow, later. Always defer if you can

4. You are in your house. You moved from your old house with dad. Make it a statement & move on. Change the subject.

5. Poisoning her. Again common. She knows she’s not right. You give her tablets, they must be to blame, so you are the cause. Put it onto the GP. Your doctor says you need to take these to help you get better. Try to get them in a blister pack. No, demand them in a blister pack. That means you are not controlling the medications, the GP is. A PWD will usually accept an authority figure (doctor, Consultant, police etc) over anyone else.

6. The only promise I would make was “I will keep you at home as long as I can keep you safe”. Please don’t make a promise you may not be able to keep. The guilt that people talk of when they’ve done that is awful. I wouId just say “ you’re still at home, I’ve not put you in a care home” & then change the subject

Also far too common is one sibling does all the work, while others are “invisible”. Make your peace with it as much as you can. You have other far more important things to worry about. I realised my brother was never going to step up. I told him I understood (even though I wanted to scream at him), but I told him he would pick up the phone to me, listen to me rant & not criticise. He did that for 2 years. I was one of the lucky ones. He stepped up at the end & became my rock in the last month

I’m very logical. It’s almost a disadvantage in this. Nothing seemed to work, but I had to cope. Every time mum got cross, accused me of anything or just got stuck in a cycle of resentment, I’d walk away. Popping to the loo ten times in an hour was not unheard of. Each time I walked back in I’d offer tea or cake. If she snapped, I’d be back to the loo Eventually she’d forget & accept cake or tea & we’d carry on. It’s hard. But it is doable

I figured that as long as I could look myself in the mirror & know I’d done my best, there wasn’t anything else I could do

She doesn’t hate you, she hates the feeling that something is wrong & she doesn’t know what. You are just in the firing line.

I hope some io that helps

 

[canary]

The one point where i disagree with Canary is that I would not bother with an SS needs assessment

I agree that if you are self-funding you dont have to go through Social Services, but I thought Id mention it as the SW may suggest something that you have not thought of. When my OH had a needs assessment the SW suggested a day centre that I did not know abut (its aimed at younger people with disabilities) and if OH wanted to go there it would need a referral from the SW, so we wouldnt have been able to access it by ourselves.

 

[Sirena]

@canary - yes I agree that could be useful. I didn't get any such info from SS, all the help came from the manager of the care agency who was very pro-active on her clients' behalf.

 

[Snowdrops77]

Simple Question or maybe just a rant to let off steam.

How do people cope with this terrible disease. How do people rationalise and deal with the guilt of wishing that their mother would pass away peacefully. I say this in the context that my mothers spirit has already gone and all that remains is a hollow shell that is vindictive, unloving, vicious, argumentative, confused, apathetic, unhappy and obviously scared. I feel like a very bad person thinking this way.

Context. My mother has Alzheimer’s in her mid 80s lives in sheltered accommodation being cared for by my dad in his late 80s. My dad is pretty much deaf and has very poor eyesight. My mum was hospitalised 3 years ago for an infection and I took the opportunity to discuss with them the benefits of moving closer to me so that I could help. This happened about 2 years ago and they now live about half a mile away.

I help as much as I can, given that I have three kids of my own, two have their own problems (registered blind). I pop in to see my parents almost every day for a cup of tea during week days, and I cook their dinner during the weekends. I do all their shopping, and have POA to look after their finances. My wife’s mother also has Alzheimer’s, which obviously stresses her out. Everyone depends on me and sometimes things feel a little desperate.

Social services in my experience have been about as useful as a chocolate teapot. The first thing they asked was about my parents finances, and once they had established that my parents had over £24k (individually), advised that we were on our own. We haven’t heard from them since and have just been left to deal with the declining situation alone.

I have particular questions.

1. What is the best way to deal with someone who will not believe anything you tell them and who seems to take the opposite view on just about everything. I’ve tried being firm, I’ve tried being soft, nothing works.
2. My mother demands to see a Doctor every morning when there is nothing wrong, except for her being old and less able than she used to be. She complains that she’s tired and cannot get about as she used to. She broke her hip 4 years ago, so it’s not surprising. However, in her mind she never broke her hip, but she believes that there is something seriously wrong and we are preventing her seeing a doctor. My dad has called the doctor so many times, and the doctor has put her mind at rest. However a few days later she denies that a doctor has been.
3. I’m being accused of stealing all her money, and l have apparently taken her house. She is convinced that she owned my house before she moved into her new accommodation and wants it back.
4. She wants to move back into her old house. (My house, not her old house, she can’t even remember where her old house is).
5. I’m being accused of poisoning her as I fill her tablet pots every week. If I didn’t she would mix them up and take the wrong ones and amount.
6. I’m being accused of conspiracy and trying to put her in a home.

I have an older brother, but he’s useless and they haven’t seen him in two years, he never contacts them.

Basically, I feel like my head is about to explode. I’m a pretty logical person, and I think this is my problem as there is no logic to this disease and I simply do not know what is best. To be hard, to be soft, argue, don’t argue, address matters, deflect matters. I’ve tried it all and nothing works.

No logic, no respite and no light at the end of the tunnel. A situation that is getting worse, and more painful and upsetting as time goes on. I’m doing my best but it’s just not good enough.

In a nut shell, how do people cope. Despite doing all that you can to help, only to be accused of theft, conspiracy, poisoning, lying and just about every other unsavoury thing under the sun. Mothers are supposed to love you, protect you, not despise and hate you.

My dad, bless him, was in tears today.

This bloody disease takes no prisoners.

Sorry, End of rant.

 

[Snowdrops77]

Hello Peekay..im new here and just read your post. It sounds like my mother your caring for . I can totally relate I'm not coping and I feel like I'm fighting a losing battle. My mother moved in with me in December last year although as far as she is concerned it's her home and I'm visiting. It's a 24hr nightmare. Ive been caring for her for 6 years in her own home but things became to bad so she has had to moved in to my home. I got the spare room all ready for her !!!! But no she was not having that !! She had the worse tantrum that lasted hours till 2am swearing like I've never heard her until she got her own way and I had to put her in my bedroom she was adamant it was hers. I find myself in the last 6 months trawling the internet trying to find answers how long does this last my mother is latter stage Alzhiemers/vascular dementia but it took me years to finally get her diagnosed as she refused point blank. She is still in total denial. I find myself shutting down and not being able to talk to her. Sorry I have no answers.