Hello

[a_daughter]

Just thought I would post and introduce myself as I have just registered.

I would appreciate any help/comments regarding my mum's situation but, from reading other posts on here I realise that everybody is going through the same thing.

My mum is 82. In Juy 05 she suffered a 'mini' stroke. Of course, she wouldn't accept that she had had a stroke and still says that she didn't (the hospital being a bit vague about whether she did or didn't didn't help either). We noticed that she got a little more forgetful and a little more confused after that. We accepted that some sort of 'senile' dementia had began to set in but hoped that she should continue her very full life and be taken eventually by something else (in the future) before much more degeneration in her mental health.

She continued with her bowling, dancing, bridge, travelling (she loved a cruise) until she went on holiday in March 06. She went on holiday on her own with Saga (no problem, "always someone to pal up with").

I don't know what happened on that holiday. We do know that she had her purse stolen and that the hotel/holiday rep, were very good in cancelling everything and making sure she had enough money, but she did not want to talk a great deal about it. We suspect another stroke.

By April, she began a preoccupation with her bowels movements, and the pain in her back from arthritis. This does exist but to her doctor the pain cannot be to the extent that she complains of.

We spent last summer dealing with her going from doctor to pharmacist asking for help with her 'bum'. At one time, my sister and I removed a whole black refuse bag from her flat of prescribed medicines. Every time she went to the doctor, the same repeat prescription was given out of a dozen or so medicines to deal with pain, asthma, heart, constipation. We were alerted to this by the local pharmacist (one of the benefits of living in a village). Open packets of medication littered her flat; she must have been taken medication repeatedly all day!

We called social services; we needed help. We knew that she couldn't live alone without support and needed to know what was available. I work full time. I don't work for 'pin' money, I am the main earner, so I couldn't take on the full time carer role. My sister was already the full time carer of her disabled husband and was unwell and awaiting a major operation (she later developed heart problems, not surprisingly).

A very well intentioned, but totally deluded 'senior' social worker came to call. The ability to organise the proverbial 'P up in brewery' comes to mind', together with the lack thereof! She spoke direclty to mum, who by this time had developed a strange ability to appear 'normal' to everyone but ourselves, and would not speak to us about our concerns in private. We ended up with a team of 'carers' who were meant to come in three times a day to make sure that mum was fed and medication was taken. We suspected that carers were not visiting when they should and our suspicision were right. They turned up whenever they could find parking/their kids weren't ill/or their was an R in the month!! Medication littered the flat and the round trip from doctor to pharmacist continued.

During this time, of course, we tried to deal with each problem through the respective 'consultant/specialist'. Bowel problems - no problem detected after an endoscopy, arthritis - yes, but in the area she is complaining of (the coxix (sp)), it doesn't cause that much pain, confusion/forgetfulness/mri scan - a diagnosis by the Community Mental Health Team in Hertfordshire of Vascular Dementia caused by the mini stroke.

Okay, so now we know what we are dealing with. Mum has Vascular Dementia; we read all the books, get all the info (a family member is a psychiatric nurse), we are now experts, and take matters into our own hands.

We find a nice Freemantle Retirement Home roughly evenly spaced between myself and my sister (at a cost of £650 per week!!) Wont it be nice. Near enough for sister to drop in, near enough to me to call in on my way from the different offices I have to visit. We can still spend every Sunday with her (we have alternatively since Dad died 17 years ago), she will love the company and be well looked after - not!!

Mum has just not settled at the home. She is more and more confused and even more distressed. I called in to see her this afternoon. She hates it there. She wants to dance, shop, play bridge, travel, etc. etc. Only she isn't capable of it any more. She constantly grizzles and says she wants to die and will even kill herself if she doesn't move somewhere else. She talks of a place where she briefly attended a day centre (which was part of a retirement home), only she forgets that she only went a couple of times and that they refused to take her any more because of her trying to get out of the building because she hated being there.

Tomorrow we have an assessment meeting with the washout social worker, the CPN, the keyworker at the home, me, sister, the home manager and I just don't know what to do/suggest/insist on to make matter any better.

Any suggestions?

Cor, how I have rambled. If you have got this far, thanks for reading, it was good to get it off my chest!!

 

[May]

Hi a_daughter

Just wanted to say hello and welcome to TP. A great place to 'get things off the chest'
Sounds like you've had a horrendous time with Mum, (understatement!) so many of your comments are familiar, in that this damn disease causes utter confusion in the person that has it. Your Mum sounds like she was a fiesty do everything kind of person before this struck. I'm in a different position with my Mum(80) as Dad is her carer with (heavy) support from me. She has always been a great 'leaner' (not meant to sound derogatory, but what comes with 57 years of marriage) on Dad, this has intensified since the AZ took hold. It seems (IMHO)that this disease, which ever type 'concentrates' the qualities a person had pre-dementia sometimes, it doesn't make life easy to cope with. We haven't reached the NH stage but are very close, and I'm dreading the effect it will have. Would agree with you regarding some of the 'professionals', I like the 'brewery' analogy, seems to fit well! What I've found with them is that they appear only to 'cover off ' their little patch of the whole , so far I've only met one who had a 'handle on our situation as a whole and it wasn't the cpn or social worker....... Can't give you any advice except do what you think is right at the time for Mum , but don't forget yourselves in the middle of all this. I'm sure other tp'ers will be along who have more experience of settling in to NH's than I have. In the meantime take care and I hope tomorrow is not too traumatic.

 

[Nell]

Mum has just not settled at the home. She is more and more confused and even more distressed. I called in to see her this afternoon. She hates it there. She wants to dance, shop, play bridge, travel, etc. etc. Only she isn't capable of it any more. She constantly grizzles and says she wants to die and will even kill herself if she doesn't move somewhere else. She talks of a place where she briefly attended a day centre (which was part of a retirement home), only she forgets that she only went a couple of times and that they refused to take her any more because of her trying to get out of the building because she hated being there.

Dear Daughter,

Welcome to TP and my most sincere sympathy for all you have put up and ARE putting up with!

I can only say what occurs to me as I read your post.
1) you have tried very hard to keep your Mum in her own home but the circumstances did not work out
2) your Mum obviously needs the higher level of care she now has - even if she does not realise this herself
3) sadly for your Mum her earlier pleasures in life are now not possible for her
4) if you could wave a magic wand and return your Mum to her own home with all the care she needed (a lovely dream!!), she still could not do those things she used to enjoy
5) being in the home is no longer a choice for your Mum, it is a necessity
6) you and your sister have obviously chosen the home with care and presumably are happy with its standards
7) your dear Mum would probably be unhappy in ANY home - even tho' she thinks that she would prefer the other retirement home, it is VERY doubtful that she would be any happier there
8) wanting to die and even threatening to kill themselves is not uncommon (INMO) for people with AD - I can only think how miserable it must be to have this dreadful disease - perhaps the wonder is that more people don't end their own lives (sorry to be so morbid)
9) the increasing distress and confusion may be related to the AD rather than the home, but your Mum obviously thinks they are linked to the home. I guess if it was me I'd also like to think that a change of scene would make me feel better, rather than face the fact that it is the disease itself and there is no way out from that. That is, if she even understands she has the disease. I find my Mum will sometimes recognise the fact but more often rejects the whole idea indignantly, as if it was just a fantasy of mine!!
10) my advice? for what it is worth!!! recognise that there is no where else where your Mum will be better or will feel better, and try not to feel guilty about her being in the home. Do they have activities there? If so, will she take part? She sounds like a sociable person who might eventualy get to enjoy the activities once she has been going for a while . . . . ???

Thinking of you and sending you strength. Nell

 

[Amy]

Hiya daughter,
Welcome to TP.
I think that you have been given some very good advice.
Sounds to me as though all you can do is acknowledge that mum is having a hard time settling (how do the staff say she is when you are not there?) - but there is no other option, and everyone will just have to make the best of the situation.
Let us know how you get on today.
Best wishes, Helen

 

[SHANDY]

Mums The Same

My mum has been in an emi nursing home for 2 weeks after being moved from a residential home, she has only been there 2 weeks and was great the first week, but as i had recently posted, my dad stays 8 hours a day with her, now she has refused to take her medication and refused to eat. we have asked my dad to let the carers do their job, but he thinks he should be doing it, and now she says she hates the home and she appears to have given up, any advice would be helpful.
mum has vascular dementia.

 

[Amy]

Hiya Shandy,
It is so difficult. Can mum say why she is not taking her medication?
Do you feel that mum would be better if dad was there slightly less? Can you help dad become a little more detached - it must be so difficult for him. He needs to know that he is still very important in your mum's life, that she still needs him, but that there are others there now to share in her care.
Love Helen

 

[SHANDY]

Thanks Amy

i am the only daughter and very close to mum, i have two brothers and we have tried talking to him to give her time to settle in, we are very worried about what it's doing to dad and mum, but we are all worried about mum, but dads just not listening to us and has told us that basically he's not bothered about us now, everything we try to do for him he doesn't want. all three kids take in in turns to see mom at night for an hour. to be honest the nursing home she is in has residents that are much more advanced than mum is, so it is very difficult for her to mix. we have asked that mom goes to all the activities in the home, but because dads there, he won't allow her to do the activities- major nightmare !!!

mojm id 79 and dad 78, they have been together for 60 years in total


regards

shandy

 

[j.j]

hi daughter
i am in excactly the same position as yourself. my mam was always active and busy and does not see herself for one minute like (those other people) we have tried all sorts to keep her at home but she still thinks she leads an active social life and goes to the pub every night but in a very confused state. as i type i am waiting for a call from the social worker for her to be sectioned today(how i type that without breaking down i don,t know) i truly wish i had some answers as what we should do, i now sometimes wish she was further on in this illness so she did,nt know what what happening, although reading other posts from people with loved ones at a later stage i realise there are just no easy stages of this disease and its all heartbreaking, sorry my post does not help much,

 

[Grannie G]

Hi a daughter, welcome tp TP. It`s good to `ramble` on TP. It helps to get a full picture of your situation.

You really are gonig through the mill with your mother. I feel for you and I feel for her. It`s so difficult to accept defeat. That the things you used to do and still want to do are no longer possible. It is called growing old and developing Dementia, both so difficult to come to terms with. Your mother is fighting it with all her might.

This is one of the differences between caring for a partner and caring for a parent. Both are equally distressing, but at least a partner can be cared for 24/7 [unless the carer is still working],as the partner is already living with the carer .

My mother was similar to yours. Loved holidays and was very sociable. She had lots of friends who slowly dropped her as her behaviour became more erratic. She fought against, first, day care and then residential care, ran away, locked herself into her house etc. She was very unhappy going into a NH but she did ask to , initially, recognizing for an instant that she needed care. Once she was in the home, it was a different matter. She tried anything to go home; emotional blackmail, running away, refusing food and medication. It was one of the most distressing periods of my life.
But there was no alternative. And I don`t believe there is an alternative for you.

With my husband, he too fought. The difference is, because we are together, We do have holidays, I make sure he has his medication, in the correct dose, at the correct time. He has constant companionship and 24/7 care and has been able, slowly, to accept ageing and Alzheimers.

I think Nell`s reply to you is so right. However painfiul, some things, we have to accept.
Let us know how you get on at the dreaded meeting. Love Sylvia

 

[a_daughter]

Thank you so much for your posts.

I made my post very late last night and, in the morning, felt ridiculous and rushed to erase it. But May had already replied and I found her post so comforting that I no longer felt silly and left it there. Now I have returned and found so many words of support. Thank you so much.

J.J. I really do feel for you. Best wishes.

And Nell, thank you for setting it out so clearly.

Shandy. My sister and I constantly tell ourselves that we have to let go and think of ourselves (although we don't do it very successfully). How hard it must be for your Dad. He obviously sees it has his duty/responsibiliuty, or even just love that makes him do this for your mum. I don't have the solution, but my best wishes.

Grannie G, its so nice that you and your partner are still able to have a a life together, but still tough for you.


Well, the meeting was okay. Mum constantly upset and crying and, because sis and I had arrived an hour earlier than the social worker, she was already worn and and ready for a lay down by the time she arrived, so we were able to get some time with her without mum being there.

The CPN had seen her first. The anti psychotic drug is to be phased out and the anti depressants increased. They actually think that the constant grizzling may be down to the anti psych drugs (apparently they work for some but not others). Did anyone see the artical in the Mail yesterday about anti-psychotic drugs? Apparently not the cure all that was supposed.

I am quite pleased about those being stopped. There seems to be a lot of side effects. One of them seems to be weight gain. Mum has lost 10 kilos since she went into the home on 1st October, but has gained 6 kilos in the last a couple of weeks since she has been on this drug. Good and bad. I don't want her to lose weight, but I don't want her to put it on because of drugs. Hopefully her penchant for chocolate biscuits and liqourice allsorts has more to do with it!

We now know that there was an incident between Mum and a couple of other residents when she first went to the home. The other residents thought that mum was getting more attention than they and were quite unkind to her. It seems to have knocked mum's confidence for six. I don't know what we are going to do about that. Although the home tell us that they have dealt with it.

We are going to try to find some outside activities by employing someone to take her shopping, come in the play cards with her, etc. etc. At the moment, she depends and my sister and I for everything she does outside the home.

I lost my Dad through cancer when he was 64. So alive until a few weeks before, still working. At the time we though it was the greatest tragedy we had experienced. We thought it was the worse thing that could ever happen. We know differently now. This is a terrible illness.

 

[Grannie G]

Dear a_daughter,

I absolutely agree with you. Everyone fears cancer, but AD and VD are equally cruel, but with no hope of a cure.

I just want you to know you must never feel `ridiculous` about any post you write. Your posts reflect your feelings at the time of writing. They help others respond to you and also help others who feel the same.

How we feel today may be different from how we felt yesterday, but that doesn`t deny yesterday`s feelings.

The feeling that embarrass you are also the feelings you need to get out of your system.

It`s a very good idea to try to get some activities to pass the time for your mother. Does the home have an Activities Organizer?

The aggressive behaviour towards your mother must be worrying. Some residents do seem to get hold of the wrong end of the stick and misunderstand situations. As long as the staff are on the ball, these situations can be diffused.

You are doing well. Keep posting. Love Sylvia x