Advice needed please

[calamityjane]

I have posted before but only once or twice although i have read many heart felt posts over the 3 years some familys in pain and dispair as there love ones progress through this awful illness .My mother was diagnosed 3 years ago with Alzheimers and vascular dementia it has been a mixed bag of symptoms as most of you know which has come to a head with my mother going into hospital a week last Saturday the last few months she has been suffering from quite marked behavioural changes the sundowning early evening mixed with confusion trying to find her home she believes she has 2 houses both have all the same things in them yet she lives in one through out the day and sleeps in the other at night .She is 80 in January and lives with my brother who is 46 and suffers with learning difficulties and epilepsy, i live next door moved down to help look after them both i suffer from Rheumatoid Athritis (it is true one trouble doesnt come alone as with most posts i have read there are multiple illness in familys )well last July my husband of 34 years was diagnosed with no hodgkin lymphoma he is receiving RCHOP treatment we have been told it is incurable but treatable.I am the only other child apart from my brother who i have just told you off so when my mother wakes at 2/3 in the morning dressed and ready to go wandering in search of her lost house my brother has to phone me to go over and try and settle her down again once in bed my mother falls into a deep sleep in seconds i am left to reassure my brother who is up at 7am for his centre then go home get a few hours sleep before the phone rings again by 8 if my mother rememebers my phone number which is written every where on every note pad, book she has or else the door bell is going and mam is at the door with very disturbing storys of her nights explots people are moving her in her sleep from one house to another she is very scared by all this .This was the reason she went into hospital as well as my brother telling me she was trying to fix the boiler she thought was broken i am torn for the love of my mother and the safety of my brother YES i can shop cook clean with the help of my daughter for them both But i cant be there 24/7 there are many bruises and carpet burns i have noticed on my brother which he has no recollection as how they came to be he must be having fits and my mother is unaware.This cant go on i know one of them will end up hurt badly But my mothers CPN who is lovely by the way ,phoned me 3 days after her being admitted to hospital to tell me there would be a family meeting this Tuesday as her consultant wants her out of hospital as soon as possible now she is just the same as she was going in ,if anything she has more bizarre storys but i understand this as the move would have unsettled her even more shes afraid of the nurses she told me they kick her to wake her up from bed in the morning the nightly trips range from wild partys and being afriad in strange hotel rooms.I am at my witts end i went to see our GP and he told me to be firm at the meeting and let the consultant know we cant cope with her at home any more i must admit at the time although the tears flowed i knew he was right then i thought Christmas is comming up maybe we could cope another few months but tonight after the hospital visit i know this is madness ,now my concern is will the consultant keep her in ? as it seems i have to choose between my mother or brother who will come and live with me .I am sorry it is such a long post but its a complicated tale and i have only touched the suface if truth be known .

 

[Sandy]

Dear calamityjane,

Yours was a very long and complicated post and you obviously typed it out in a flow of emotion. Please forgive me, but I have taken the liberty of breaking it up into smaller blocks of text to make it easier for my aging eyes to read.

There is certainly a lot to consider and I can't think of anything very helpful at this late hour. Perhaps I can contribute something after some sleep. I'm sure others will be along in the morning with more constructive comments.

Take care,

Sandy

I have posted before but only once or twice although i have read many heart felt posts over the 3 years some familys in pain and dispair as there love ones progress through this awful illness .

My mother was diagnosed 3 years ago with Alzheimers and vascular dementia it has been a mixed bag of symptoms as most of you know which has come to a head with my mother going into hospital a week last Saturday the last few months she has been suffering from quite marked behavioural changes the sundowning early evening mixed with confusion trying to find her home she believes she has 2 houses both have all the same things in them yet she lives in one through out the day and sleeps in the other at night .

She is 80 in January and lives with my brother who is 46 and suffers with learning difficulties and epilepsy, i live next door moved down to help look after them both i suffer from Rheumatoid Athritis (it is true one trouble doesnt come alone as with most posts i have read there are multiple illness in familys )well last July my husband of 34 years was diagnosed with no hodgkin lymphoma he is receiving RCHOP treatment we have been told it is incurable but treatable.

I am the only other child apart from my brother who i have just told you off so when my mother wakes at 2/3 in the morning dressed and ready to go wandering in search of her lost house my brother has to phone me to go over and try and settle her down again once in bed my mother falls into a deep sleep in seconds i am left to reassure my brother who is up at 7am for his centre then go home get a few hours sleep before the phone rings again by 8 if my mother rememebers my phone number which is written every where on every note pad, book she has or else the door bell is going and mam is at the door with very disturbing storys of her nights explots people are moving her in her sleep from one house to another she is very scared by all this .

This was the reason she went into hospital as well as my brother telling me she was trying to fix the boiler she thought was broken i am torn for the love of my mother and the safety of my brother YES i can shop cook clean with the help of my daughter for them both But i cant be there 24/7 there are many bruises and carpet burns i have noticed on my brother which he has no recollection as how they came to be he must be having fits and my mother is unaware.

This cant go on i know one of them will end up hurt badly But my mothers CPN who is lovely by the way ,phoned me 3 days after her being admitted to hospital to tell me there would be a family meeting this Tuesday as her consultant wants her out of hospital as soon as possible now she is just the same as she was going in ,if anything she has more bizarre storys but i understand this as the move would have unsettled her even more shes afraid of the nurses she told me they kick her to wake her up from bed in the morning the nightly trips range from wild partys and being afriad in strange hotel rooms.

I am at my witts end i went to see our GP and he told me to be firm at the meeting and let the consultant know we cant cope with her at home any more i must admit at the time although the tears flowed i knew he was right then i thought Christmas is comming up maybe we could cope another few months but tonight after the hospital visit i know this is madness ,now my concern is will the consultant keep her in ? as it seems i have to choose between my mother or brother who will come and live with me .I am sorry it is such a long post but its a complicated tale and i have only touched the suface if truth be known .

 

[calamityjane]

Thank you Sandy i had so much to say and feeling so desperate it`s a wonder i even paused long enough to put in a full stop.

 

[Helen33]

Hello Calamityjane

It was really good to read your post, to know that you had a place where you could let it out. It sounded like you are doing a wonderful job looking after your mother until very recently when you realised that this was no longer viable.

I think your GP is right in that you can't go back to where you were before because mum's needs are greater and there is also the life of your brother to be taken into consideration.

I hope the meeting goes well on Tuesday and try to be firm about mum needing 24 hour care.

Love and best wishes

 

[Skye]

Hi calamityjane, welcome to TP.

What a lot you have to cope with! I think you've done wonders to cope for as long as you have.

I suspect your CPN will be at the meeting, and probably your social worker too -- you could perhaps ring and check.

I don't think they'll keep your mum in hospital, you've said the consultant wants her bed, and these meetings are usually a preliminary to discharge. I suspect they will recommend an EMI unit for her, and this is why you need your SW with you. They should give you time to find a suitable place, though, they can't just throw her out.

Something you need to consider also is funding, unless your mum qualifies for NHS continuing care. If your mum owns the house, your brother will probably be allowed to remain in it, but if he moves in with you, the house would have to be sold to fund care, though the LA would pay for the first 12 weeks, unless there are substantial savings.

It might be a good idea for you to ring the AS helpline if this is the case. Of course, if the house is rented, it wouldn't be a problem.

The number is 0845 300 0336.

Good luck with the meeting, let us know how it goes. And if you have any more questions, just ask.

 

[Lanie]

You must make sure that everyone in the meeting fully understands the circumstances that you are in, if it helps put it in writing to give to the consultant. Explain to them that you can't possibly take your Mum home at this time, ensure you get some help from a social worker. Is your Mum in an assessment ward as they cannot discharge your Mum without a suitable package of care. Contact your local Alzheimers society and speak with an outreach worker they are very supportive.

I hope the meeting goes well, it is easy to feel that you are being pushed into making a decision about the future. Don't allow them to rush you.

Take care

Lanie

 

[calamityjane]

Thank you all for your advice and concern i will let you know tomorrow how it went,i did phone the Alzheimers phone number today but no one was available but i did get on to a duty CPN as my mother`s had the day off, explianed the situation and asked if my mother would be present at the meeting as i would like to talk to the consultant myself first (it would be near impossible to leave my mother hear me telling the Doctor she is to much for me to cope with )the CPN said this could be arranged and she would talk to the consultant herself this afternoon and explian out situation.
We havn`t got a socail worker my mother did see one once but took an instant dislike to her but me and my daughter will do or best.It is an assessment unit by the way.

 

[Margarita]

as it seems i have to choose between my mother or brother who will come and live with me .

Now how you feel, there I was thinking it Only can happen to me, thank - you for sharing.

it just so emotionally heartbreaking , but you know deep down, your doing it all for the best because you Care Love them Bot, you have made the right choice for both of them .

I do hope you get a social worker .

the CPN said this could be arranged and she would talk to the consultant herself this afternoon and explian out situation.

That sounds positive.

It is an assessment unit by the way.

That good , because they must relies your mother can not go back home without 24 hour Care .

Just stand you ground tell CPN how your brother going to be living with you and there no one to care for your mother in her home . Its Just sounds like it is to stress full for your brother to keep living with your mother because of his epilepsy .

My daughter even with medication for epilepsy can't take stress. She move likely to have a Seizure under a lot of stress in her life .

Wishing you the best of luck for tomorrow

 

[calamityjane]

The meeting went well Magarita your words rang so true the stress on my brother has shown in him fitting more this was another thing i told the consultant.The little room was packed consultant ,CPN ,2 nurses ,ward sister and a lovely woman who told me she will now be my mothers socail worker as well as me and my daughter.
As the consultant shook my hand he asked me to explian what has been happening i started telling him about our situation my mother`s deterioration the fact that my brother cannot look after himself let alone be responsable for my mother through the night and of course my husband needing care as he goes through his treatment for lymphoma.That was enough for them to all agree my mother needed a care home rather than a care package as that just wouldn`t be enough and her CPN added that she didn`t think my mother wouldn`t take to strangers comming into the home as this has been a problem before with her distrust of people.My feeling`s are all over the place at present guilt" i expected "but i also feel lonley how silly a mother of two 52 years of age.
Me and my daughter went over this afternoon to see mam she had waited all day to see the doctor but of course we had a private meeting without her and i had to look her in the eyes and lie telling her most prob he wants you to stay in a bit longer as he has only just altered your tablets she acepted this (which made it all the more cruel she trusted me and i was telling a bare faced lie )she then told me she keeps mixing me up with her own mother and has to pull herself back.Then about ten minutes before end of visting she told us to go home as she was going down to the tv room ,i said i`ll call over this evening she told me dont bother have a rest and i think she genuinly was concerned about me !which again was out of character she was never worried about me having enough rest before this was a gentler side which was lovely BUT NOT TO DAY PLEASE ,today i need you to push me to the limit for me to know i am doing the right thing .This illness is such a roller coaster of emotion for the person suffering and the family we love them, hate them all within the same day as they do us .
You are a great bunch of careing supportive people this site is worth it`s weight in gold even when i have not been posting i have learned so much in reading your experiances thank you all .