First post, very long, need help

[1Goldring]

Never posted before as to be honest, when I read the posts I find the whole situation to be so depressing and frightening I sometimes don’t want to read them.

Mum diagnosed about 3 years ago with altzheimers, she is now 90 and has lived with me for about 35 years.

We have definitely hit a crisis point. She was initially prescribed memantine by the memory clinic and subsequently discharged unless there was any change at which point we would need another referral from the GP.

She reached a stage of significant deterioration and the GP advised stopping the memantine as it clearly wasn’t helping and to be honest, she did seem much better without it. That was early 2018.

Further decline has been progressive the past 6 months. She is on quetiapine 50mg which has been prescribed for a number of years due to insomnia. The GP upped the dosage to twice a day to try and alleviate the confusion and delusions that were happening early evening.

Things have been very up and down and despite giving mum the 2 quetiapine per day, we seem to go a few days where everything is reasonably stable then we have a few days where she seems to go totally in to melt down, always about the house, where we live, who her daughter is and where she is etc etc.

Unfortunately we lost one of our cats 28/1/19, I cannot begin to tell you the impact and effect this has had on Mum, it has been just monumentally devastating for her.

She is obsessed about the cats we have left in another house, obsessed about the fact that she only came to live with me yesterday, wants to go back to a house we lived in 40+++ years ago, wants to go back to a house that doesn’t actually exist to feed cats that don’t exist. She has got in to her head that she has thrown 2 cats out in the cold and we need to find them.

There is just no convincing her that none of the above is reality.

She is just relentless and the questions are on constant repeat then she either gets really upset and ends crying or angry and shouting at me.

I actually ended up taking her out at 9.00pm last Friday night in the wheelchair, she wanted to go to the house we left cats in but of course that doesn’t actually exist however it seemed the only way to deal with it at the time.

I had to wheel her up and down the whole area before she acknowledged that she had no idea where to go or where this house actually was.

(She usually will not go in the wheelchair direct from the house as she doesn’t want the neighbours to know she uses it)

She knows my name but insists her daughter lives somewhere else. Then she asked me if she could move in to stay with me!!

I have had to remove the keys for the front and back doors as she is trying to go out and call for cats that don’t exist. Her mobility is so poor that this is a significant risk she could fall and break a hip.

She thinks she can actually go back to previous properties we owned despite the fact that she can’t walk the length of herself. She wants to call a taxi to take her home, wherever home is in her head !!!

I have booked a holiday to leave 19.2.19.

When I manage to get away, I have a friend who comes to live with mum and look after her.

Mum is very comfortable with my friend and almost looks on her as another daughter but how can I leave her to deal with this kind of delusions.

At the same time I really need to get away and have this break; I feel like I am going wrong in the mind now and just need to get a bit of space from it all.

I am finding it almost impossible to cope with this, there is absolutely no reasoning and she doesn’t even recognise at times that I am her daughter.

There has got to be something that would alleviate the delusions.

I absolutely know the road this illness takes.

I thought that given her age I would manage to deal with it at home for whatever time she had left but realistically I am struggling so much and don’t know how much longer I can cope with it the way it is at present.

If we could just be prescribed something that would alleviate the delusions she is having that would be a massive help. She is now 90 years old and I really don’t want to think about a care facility for her at the end of her days.

The GP has agreed to make an urgent referral back to the memory clinic.

Don't know where to start really but at the moment I just want someone to come and take mum out the house.


Tonight she is still going on about the other house over the road where she lives.

She was adamant she was going back to find said cat, wheeled her miles but of course there is no other house.


She said she would go on her own and I just told her she was not leaving the house or I would ring the doctor and she would end up in the hospital.


Ended up having a major raja with her!!! Not helpful I know.


Eventually told her I would run her in the car as she couldn't walk but she had to give me directions and if we couldn't find said house she had to accept what I was telling her. Needless to say we ended up coming home with her very subdued but still adamant that she had been there last night.


Never really anticipated it would get this bad but I just can't go on with this or cope with it much longer.


I have reached a point where I feel this is destroying my life, I have no life, I don’t know how much longer I can deal with this yet I can’t stop crying as I feel so guilty about feeling this way. I know she can’t help it and has no control but how can I go on living with this.

 

[Beate]

I'm afraid you cannot ever reason with a person with dementia. It will not be easy but you cannot change her - you will have to change your responses to agreeing and distracting. Easier said than done, I know, but this article might help:

https://forum.alzheimers.org.uk/threads/compassionate-communication-with-the-memory-impaired.30801/

 

[Bunpoots]

I know now what it's like when there is no reasoning with someone so you have my sympathy.

I agree the only way is to agree and distract. Perhaps a friend is looking after the cat and you can go tomorrow to get it back ... And repeat as necessary.

Silly idea I suppose but would it be possible to adopt a cat similar enough to appease...or distract with a toy cat that purrs?

 

[Gingercatlady]

Sorry you are feeling so down, I can sympathise with you and recognise much of what you describe. I agree with others that distraction and a ready answer can be useful, but doesn't always work. Have you spoken to your doctor about how you're feeling? Maybe they can offer some help and advice for looking after yourself and your feelings.

My mum is in respite care at the moment after leaving the house and having a fall, since she's been there she has become obsessed with my ginger cat and talks about him a lot, we always had cats and she keeps saying she wants one, I've just ordered a petting cat toy (ginger) from a company online called Unforgetable, so that when she comes home she can have her own cat, I'm hoping that this will help her settle and give her comfort. Maybe your mum would like one.

I hope you go on your break, your friend must know what's going on and feels confident that they can cope with the situation. It sounds like you need a rest and I bet your friend thinks that too.

Wishing you well

 

[1Goldring]

i know everyone advises distraction but i just find it so difficult when she is adamant and determined that we go to a non existent house to look for a non existent cat.

I am truly not dismissing the replies as i know everyone on here is having a hard time and trying to help.

Think I have just reached the end of being able to cope with this. I

know it is all very real for her and I do try but clearly making no impact. It is so hard when the person with dementia has no recollection the next day or even the next 5 minutes and you are just in bits and you remember everything.

It is also so hard to hear her say that she doesn't want to live here with me anymore when she has lived with me for 35 + years..

She is now telling me to find her a suitcase to pack up her clothes as she is going home tomorrow so she wants me to take her to the train station.

I have just told her we need to discuss it in the morning as can't talk about it tonight.

Gingercatlady - we still have 1 cat with so she does fuss her and wants to know where she is all the time. I actually think that although we lost 1 of the cats, she doesn't remember the actual event however it has still had this massive impact.

I couldn't ask for a better friend as she just keeps telling me to book whatever holiday or break I want and she will be here. She tells me mum reacts differently to her as part of her still thinks she has a visitor/guest in the home so she never gets the same problems I do. She is also infinitely more patient than I am but says it is easy for her as she doesn't deal with it 24/7. .

I believe this is true to some extent as I know mum can act normal to some degree when I have a friend in the home yet as soon as they leave she starts the questions with me. It is almost as though she knows not to expose herself in front of someone who visits.

I have reached out to her and asked her to come early in the hope that mum perhaps responds to her better than me but also because I just need an emotional crutch at the moment.

You think you know and understand what others are having to deal with, I actually cared for 2 relatives who died with cancer which was pretty awful but nothing compares with this. You still have the body of the person but you have actually lost them.

Just think that this is the worst illness that people have to deal with and not enough appropriate support.

 

[Francy]

i know everyone advises distraction but i just find it so difficult when she is adamant and determined that we go to a non existent house to look for a non existent cat.

I am truly not dismissing the replies as i know everyone on here is having a hard time and trying to help.

Think I have just reached the end of being able to cope with this. I

know it is all very real for her and I do try but clearly making no impact. It is so hard when the person with dementia has no recollection the next day or even the next 5 minutes and you are just in bits and you remember everything.

It is also so hard to hear her say that she doesn't want to live here with me anymore when she has lived with me for 35 + years..

She is now telling me to find her a suitcase to pack up her clothes as she is going home tomorrow so she wants me to take her to the train station.

I have just told her we need to discuss it in the morning as can't talk about it tonight.

Gingercatlady - we still have 1 cat with so she does fuss her and wants to know where she is all the time. I actually think that although we lost 1 of the cats, she doesn't remember the actual event however it has still had this massive impact.

I couldn't ask for a better friend as she just keeps telling me to book whatever holiday or break I want and she will be here. She tells me mum reacts differently to her as part of her still thinks she has a visitor/guest in the home so she never gets the same problems I do. She is also infinitely more patient than I am but says it is easy for her as she doesn't deal with it 24/7. .

I believe this is true to some extent as I know mum can act normal to some degree when I have a friend in the home yet as soon as they leave she starts the questions with me. It is almost as though she knows not to expose herself in front of someone who visits.

I have reached out to her and asked her to come early in the hope that mum perhaps responds to her better than me but also because I just need an emotional crutch at the moment.

You think you know and understand what others are having to deal with, I actually cared for 2 relatives who died with cancer which was pretty awful but nothing compares with this. You still have the body of the person but you have actually lost them.

Just think that this is the worst illness that people have to deal with and not enough appropriate support.

I am reading this post and except for some of the details I could have written it myself. I am having great difficulty dealing with my husband and he has not yet been diagnosed, we are wait for appointment at memory clinic however there is no doubt what is wrong with him. I to find the obsessions difficult, in my husband's case he is out calling to the birds to come and get fed and he gets annoyed when they don't come. His problems are so many but probably his fear is the worst, he won't let me drive the car now he won't let me go out of the house, he is just not rational. I really feel for you and totally agree with what you say, I too have dealt with illness and death but nothing has prepared me for this, this is the worst illness of all. I am watching my once lovely husband trying to hold on to the last threads of his memory and sanity and know he will never come back even though he is right there with me. I recently read an article on Anticipatory Grief( you could Google this) and it totally explained all that I was good in through and felt, I didn't feel so guilty after reading it. Nothing prepares us for this, the sadness,the pain, the exhaustion and knowing every day will either be the same or even worse. I wish I could help you and try to brighten you'd day, I can only say maybe when spring come we may all benefit from the brighter weather. Take care if yourself. XXXX Francy

 

[Izzy]

Good morning @1Goldring and welcome to the forum.

’m so sorry to about your situation and as others have said I too think you are experiencing anticipatory grief. There’s a little about it in this fact sheet -

https://www.alzheimers.org.uk/sites/default/files/pdf/factsheet_grief_loss_and_bereavement.pdf

You might find it useful to give the helpline a ring and talk things over with someone there. The details are in this link and the phone number is

03002221122

https://www.alzheimers.org.uk/

 

[marionq]

In a similar phase several years ago my husband wanted every evening or late afternoon to go and meet one or other of his brothers. All six of them are dead several from dementia. He was quite clear about the pub or cinema he was going to with them although both of these places were demolished in the sixties. It often resulted in me walking the neighbourhood with him and on one occasion when he clung to a lamppost to prevent me guiding him home I had to call the police. He then behaved charmingly and talked to them as if they were taxi drivers. They had previous experience of him disappearing for hours so knew what was going on.

This and worse took up two years of my life and reduced me to a nervous wreck. It stopped when he was put on Trazodone anti depressant in gradually increasing doses. That was a life saver for me and once he was calm I could contemplate keeping him at home. He is 86 and in the seventh year since diagnosis.

You have all of my sympathy. This stage is torture.

 

[Prudencecat]

My mum currently doesn't think she is in her own home. On a good day she is content to stay there for now on a bad day she is banging on the door demanding to be out to go home. There isn't any reasoning with her. She thinks downstairs is some type of pub restaurant full of people and has retreated upstairs. She believes I have cunningly taken photos of her house so that I can make this one look the same. Deflecting her doesn't always work sometimes saying it has been snowing, icy or cold will settle her. I too have the doors always locked it is heartbreaking to watch her the first time it happened I really just didn't know what to do. She changed from talking reasonably to packing a carrier and wanting out in seconds. She isn't very mobile and has steps up to her house so taking her out is a two person job so walking her around isn't an option. Last time I explained why she couldn't go and then carried on with the vacuuming. Sometimes I think I'm not helping I just seem to be feeding her agitation after a few hours of backwards and forwards she retreated to her bedroom. It's strange that she can't remember something from a few minutes ago but can hold on to her delusions for some time. I'm sorry I can't think of anything to help you sometimes just reading other peoples experiences helps and makes me feel as if someone understands.

 

[Rosettastone57]

Hi
So sorry to hear this. Let me be blunt: do you think your mother needs residential care? Has she lost capacity to make her own decisions? You need to contact social services - she's a vulnerable adult and their responsibility. You ate close to carer breakdown and they need to assrss you as well as your mother. Or is she'll be self funding, you can go ahead and find a care home yourself. Perhaps you'll feel you can deal with arranging this once you've had your holiday.

I agree . This sounds like the time has come for a care home . There would be a team looking after her in residential care. There would be less pressure on you and you are entitled to a life of your own

 

[Toony Oony]

This might be totally the wrong suggestion .... but if you were self-funding, would it be worth a quick ring round today to see if a care home in the locality could take your Mum for respite while you are on holiday?
I know it's really late notice - but it may be worth a try. Not only would you know that experienced folk were caring for Mum in your absence, but your friend would not be faced with the ever increasing problems you describe and you could see how your Mum adapts to CH life, should that become necessary.

 

[1Goldring]

Thank you for all the responses. I have had a visit from the RITT this afternoon. To be honest I found the nurse a bit patronising and felt she was trying to get me to understand that this was all normal for a person with altzheimers. She has however said that the case will be passed to the psychiatrist to review medication and that an anti depressant may help. Thinks this may be done next week.

I know we may be reaching a stage where I may have to look at care homes but feel so guilty and torn I just can't bring myself to do it at the moment. I know that if I breakdown she would have to go in to care.

My friend is coming tomorrow so that will be a help and mum may react differently with her.

If I do manage to get my holiday 19.2.19 I will have to think about care when I get back.

 

[EmergencyKitten]

My first post and I had to respond to you. I so feel your anguish - I am in similar boat. My mum is similar. 25mg quetiapine and 50mg sertraline daily now and it doesn't actually seem to be helping. She has vascular and DLB, seems to have had a sudden deterioration recently. She is making no sense at all and her delusions are insistent and permanent. (She is moving/packing/leaving/going. She thinks she's only just moved to her house - she moved there in 1964). I'm struggling badly to respond appropriately, I find it all so emotionally devastating. recently she's taken to denying she ever had a daughter, who are my real parents, etc, and where are my children (I dont' have any - we were going to adopt but had to stop the process due to her increasing needs).

I won't detail it all here as this is your post not mine, but I just had to reach out and offer some sort of virtual hug, you sound so very low.

I too have a holiday booked and my aunt, like your friend, is coming to provide competent adult cover whilst I am away. When I get back I will be researching the care homes as I have a feeling we are not too far off.

I hope you can get a proper break when you are away, trust and rely on your friend and take your respite time, you so need it. Good luck and you're not alone x

 

[Ann Mac]

Hi 1Goldring,

Bless you - your post brought back a lot of memories for me, of caring for my Mum in law for 3 years in our home, and the persistent and fixed in concrete delusions that no amount of compassionate communication, distraction, love lies or anything else could ease for her. We had the going home to the house she had lived in over 50 years before in Ireland, the banging on doors and windows demanding to be let out, even phoning the police to report that she was being held against her will. And recurring obsessions with a missing child or baby (sometimes hers, sometimes a neighbour or relatives child she thought she was looking after, and sometimes my child - when I couldn't produce this child, it would often lead to her thinking I'd killed it) and also a fixed belief that her son was her husband and I was his 'fancy woman'. She was verbally abusive and threatening, and we could see she was moving towards physical violence.

We trotted to and from the hospital, seeing an ever changing parade of different consultant psychiatrists, all of whom prescribed a variety of different drugs - sadly, in Mils case, nothing helped. Even having her admitted to hospital and the medication reviewed, changed and (eventually ) removed didn't help. The delusions grew worse, and we had to admit defeat and agree to residential care in an EMI Nursing home.

Its only after she moved to the home that I think the impact of caring for her for those 3 years really hit. And yes, I really struggled with feeling guilty, no way would I minimise how awful that was - but over and above that was the realisation that there was no way we could have continued, because Mils illness had developed in a way that made her being cared for at home completely impossible. I do understand the desire to keep her with you and continue caring - but I also know that trying to do that, when you are faced with the dreadful stress of constant arguing, escape attempts, verbal attacks and witnessing the level of distress that persistent delusions can cause the person you love is impossible. You can't make it better for her, you can't stop the delusions, you will wear yourself down to the point of being ill, and to the point where you can't care for her properly.

Mils delusions have continued since she has been in the EMI nursing home - still so severe that between the delusions, the physical and verbal violence and the fact that the long list of anti-psychotic drugs that the consultants prescribe has left her with a condition that causes her physical distress, she now has 1-1 care to keep her and other residents safe.

By all means try medication - but if it doesn't help, for your sake and your Mums, please consider residential care. It isn't failing or giving up - its realising that sometimes, the way this illness manifests, it really is impossible for anyone to care for their loved one at home, and a specialised setting, where there are more people to interact and share the care (so they don't end up exhausted and ill) is actually the best option for both you - and your Mum.

Good luck xxxx

 

[1Goldring]

My first post and I had to respond to you. I so feel your anguish - I am in similar boat. My mum is similar. 25mg quetiapine and 50mg sertraline daily now and it doesn't actually seem to be helping. She has vascular and DLB, seems to have had a sudden deterioration recently. She is making no sense at all and her delusions are insistent and permanent. (She is moving/packing/leaving/going. She thinks she's only just moved to her house - she moved there in 1964). I'm struggling badly to respond appropriately, I find it all so emotionally devastating. recently she's taken to denying she ever had a daughter, who are my real parents, etc, and where are my children (I dont' have any - we were going to adopt but had to stop the process due to her increasing needs).

I won't detail it all here as this is your post not mine, but I just had to reach out and offer some sort of virtual hug, you sound so very low.

I too have a holiday booked and my aunt, like your friend, is coming to provide competent adult cover whilst I am away. When I get back I will be researching the care homes as I have a feeling we are not too far off.

I hope you can get a proper break when you are away, trust and rely on your friend and take your respite time, you so need it. Good luck and you're not alone x

 

[1Goldring]

Emergency Kitten Thanks so much for your response. I totally appreciate that you felt the need to respond because I have actually read a number of posts then stopped myself looking for a while as found the whole situation to be way too depressing rather than helpful.

I think my first post was desperation and that is a pretty bad place to be.

I suppose part of that is a denial that you will ever get to that stage and partially that you just don’t want or can’t acknowledge that you may end up in that situation.

My friend came Friday as I asked her to come early because I was just falling apart at the seams. Friday evening was pretty awful as mum was adamant she was going back to the other place (wherever that is). Told her we couldn’t drive as we had had a couple of drinks so leave it till the morning.

She was having none of it and said she would walk herself, she can’t walk the length of herself! This time, rather than take her in the wheelchair we said we would walk with her as I knew it would be a 5 minute venture before she had to give up. We took an arm either side but within about 15 yards she had to give up and say she had to go back as she couldn’t walk.

Sadly – I felt that was a result!!

My friend is amazing, she tells me it is easier for her as she doesn’t deal with it 24/7, she tells me mum reacts differently with her which is true and she is adamant that I have to go and have this break. I am very lucky that I have her but also another 2 friends who live locally who have pretty much said the same and have also said they will be there if any crisis should arise.

Like you, I know I am going to have to at least research local care homes but it is such a difficult thought. I know I will reach a point where I just can’t do this any longer yet I keep asking myself, “how could you take her to an unfamiliar place and walk away and leave her”

We have the appointment with the psychiatrist tomorrow for medication review. They initially said it would be 18.2.19 but told them we just couldn’t wait that long or both of us would end up needing hospital in patient care!!

I am truly hoping for a miracle here that they can prescribe something to calm the situation but realistically I know it is unlikely.

Will just have to take a day at a time and do what I think is best at the time. Hope you manage to get your holiday and that you are able to stay strong until then. Think we will both be torn apart when it comes to the stage of looking at care homes.

 

[1Goldring]

Hi 1Goldring,

Bless you - your post brought back a lot of memories for me, of caring for my Mum in law for 3 years in our home, and the persistent and fixed in concrete delusions that no amount of compassionate communication, distraction, love lies or anything else could ease for her. We had the going home to the house she had lived in over 50 years before in Ireland, the banging on doors and windows demanding to be let out, even phoning the police to report that she was being held against her will. And recurring obsessions with a missing child or baby (sometimes hers, sometimes a neighbour or relatives child she thought she was looking after, and sometimes my child - when I couldn't produce this child, it would often lead to her thinking I'd killed it) and also a fixed belief that her son was her husband and I was his 'fancy woman'. She was verbally abusive and threatening, and we could see she was moving towards physical violence.

We trotted to and from the hospital, seeing an ever changing parade of different consultant psychiatrists, all of whom prescribed a variety of different drugs - sadly, in Mils case, nothing helped. Even having her admitted to hospital and the medication reviewed, changed and (eventually ) removed didn't help. The delusions grew worse, and we had to admit defeat and agree to residential care in an EMI Nursing home.

Its only after she moved to the home that I think the impact of caring for her for those 3 years really hit. And yes, I really struggled with feeling guilty, no way would I minimise how awful that was - but over and above that was the realisation that there was no way we could have continued, because Mils illness had developed in a way that made her being cared for at home completely impossible. I do understand the desire to keep her with you and continue caring - but I also know that trying to do that, when you are faced with the dreadful stress of constant arguing, escape attempts, verbal attacks and witnessing the level of distress that persistent delusions can cause the person you love is impossible. You can't make it better for her, you can't stop the delusions, you will wear yourself down to the point of being ill, and to the point where you can't care for her properly.

Mils delusions have continued since she has been in the EMI nursing home - still so severe that between the delusions, the physical and verbal violence and the fact that the long list of anti-psychotic drugs that the consultants prescribe has left her with a condition that causes her physical distress, she now has 1-1 care to keep her and other residents safe.

By all means try medication - but if it doesn't help, for your sake and your Mums, please consider residential care. It isn't failing or giving up - its realising that sometimes, the way this illness manifests, it really is impossible for anyone to care for their loved one at home, and a specialised setting, where there are more people to interact and share the care (so they don't end up exhausted and ill) is actually the best option for both you - and your Mum.

Good luck xxxx

 

[1Goldring]

Ann Mac, OMG, I think you have just documented my biggest fear and I have no idea how you managed to keep going for 3 years. Within myself, I am not particularly optimistic about the psychiatrist appointment tomorrow but have to try.


I am beginning to realise that the dreadful stress of constant arguing, escape attempts, verbal attacks and witnessing the level of distress that persistent delusions can cause the person you love is impossible but at the same time, I am so struggling with the thought of the only realistic alternative. I know in my heart you are right but I suppose I want someone to just take it out my hands in the hope that it alleviates the guilt.


The issue as you know, is you are becoming destroyed and they have absolutely no awareness or recollection so they think everything is peachy when they get up in the morning. I have actually reached a point where despite the fact that I have a huge guilt and don’t know if I can do this, I also have times where I don’t even like her and resent the fact that this is how my life has become.


I guess I just need to reach the stage where I acknowledge I can’t do it any more.

 

[lis66]

Hi 1goldring just had to reply I to am desperate very down crying on and off for the last two years ,have had councilling,I will have to do care home sooner rather than later and like you can't face it,and feel Alzheimers has consumed my life for the last three years,mum has had this devastating illness for six years and it's impact will stay with me forever I feel sending big hugs to you xx

 

[Prudencecat]

I too am struggling with the decision to let mam go in to a care home. It is OK talking about it and looking at them but I can't imagine actually leaving her there. We have gone over all the sensible arguments that she will be safe and have a better quality of life but it is still so hard. My son is brilliant with her stays with her over night and isn't phased about any of the personal care he has offered to give up his job and look after her. I'm ashamed to say I have actually seriously considered it but it isn't fair to him. I have her name on a waiting list for a lovely home close to us I hope I can go through with it when the time comes.