Should I bring Mum home for Christmas?

Hi Everyone, this is my first time posting on here, though I've read quite a few of your posts and found them very helpful and interesting.

My 92 year old Mum is in an assessment hospital and will go into a Nursing Home sometime in the new year. She has gone down hill very quickly lately and I have issues about the medication she has been prescribed as she was on no medication for AD when she lived at home a few weeks ago, and is now on sedation and anti-psychotics. I feel sure these are making her worse but it's a terrible fight to get the psychiatrist to reduce them.

Mum never dozed during the day, she was always on the go - 'working', tidying cupboards out, not that she ever threw anything away! Now Mum often dozes when I visit in the afternoon and I cannot wake her. We used to talk all the time about the family, what was in the news but now she hardly talks, and then it's only a few words at a time and usually they don't make sense. She has no emotions, I tell her family news and she has no interest, it's as if she's depressed but she's on an anti-depressant.

I haven't taken my mother out of the ward in the 8 weeks she's been in, partly because it's so cold and wet outside (it is Scotland after all!) and the ward is very hot and my mother feels the cold. And no one has even suggested it. Now today I felt pressure being put on me to take Mum home to my house for Christmas dinner. I'd love to have her there - I'm 56 and never spent a Christmas away from my Mum. But would it be the best thing for her? I'll feel guilty if I don't take her, but afraid she'll be upset at the change. She appears to have no memories of anything outside the ward so won't she even be afraid of the journey and going to a strange house? And will she enjoy it? I'm sure she'll enjoy the food, but  she lives in her own little world now and interacts with nothing and nobody. Will the laughter and noise of a Christmas dinner upset her? I'll be cooking and in the kitchen, someone will have to sit with her in the lounge and she now doesn't know my husband and children and she'll want to be with me. A good friend brought her Mum home last Christmas and had to take her back before the meal as she became so distressed, and this is obviously on my mind too.

Any ideas? Have you gone through this? Did it work out? I'd appreciate any advice you can give.

Erin

What if you were to take her out to lunch one day and see how well she does in a restaurant? If she seems to be ok there with the hustle and bustle then she may be able to make it for Christmas dinner. And even if she does do well in a restaurant and not during dinner, then that is ok too. The fact is that you tried. She may not be able to tell you how much she appreciates you but I know she would LOVE to be around you during the holidays. I was worried about my Gma and how she would handle being at my MIL's house during Thanksgiving but she did great! In fact, she told me that she had a wonderful time. Of course though, my gma isn't as bad as your mother just yet. But I believe that even if they can't express their love or gratitude, that just the fact that they are able to spend time with loved ones, comforts them just to know that they are loved.

Welcome to HW and the forum
YOU have been given great advice already from the members
I too agree with RED
Take her out for a trial run so to speak and see how it goes for you both

Even if on AD's she can still become depressed........

It is a hard decision but again I think Red has come up with a great idea for you
PLEASE do stay with us here and get the support and understanding we all have of this DD that takes our loved ones from us
Also read other threads to get insight
God Bless you and your Mom
LYN

ERIN
When you go Friday to Doc take a total LIST
of all questions you want answered..........
I truly wish you do find out all you need to know to help your mom......
God Bless you for being the great daughter you are/

I looked after both mom and dad in their homes til death ( he was here and then in hospotal I I had to finally give permission to turn off life support
HE did not want that
My siblings went behind my back and did this to him

I was sick and I am so sorry I could not have been there to tell the docs check chart there was a DNR( do not ressucitate on it .........
Luvs
God Bless
.........LYN

Hi Everyone

I feel bad for not having been on here for so long and giving you an update on Christmas. I couldn't take Mum out for a run in the car because the weather was so cold and wet, and when we went to see her a few days before Christmas we were told she was in isolation as she had Norovirus. Poor thing was being sick and had diarrhoea. She wasn't well enough to come home on Christmas day but we took her presents and helped her with her dinner and we had a nice time with her. She recovered pretty well really.

I saw the doctor a week before Christmas too. I asked about her medication and the doc said 'She's not on any anti-psychotics now'. I was surprised, as she still had been the last time I'd asked a nurse - and when I said 'Oh really? Since when?' the doctor looked a bit embarrassed and said 'Since yesterday....' Hmmm, a bit of a coincidence I think that the doc takes her off them after five weeks, and the day before she sees me.

Doc then said she would cut out her evening sedation and leave her on one dose in the morning. I asked if that was a good thing to do at same time as removing the anti-psychotic and she said yes, no problem. I further asked if cutting out the morning dose would not be better, but she said no. I later found out she'd reduced both by half but hadn't told me, though I feel it was a better decision.

I'm now going to have to move mum to a nursing home and pay for her care, as pressure is being put on me to get her out of the hospital. But she's settled and I like the staff, and Mum won't notice if the decor is better, but I've no choice.

I still tell myself that if things don't go well I'll just take her home with me, I won't have her on lots of sedation again. She is far worse than in October when she went into hospital for a small fall that did no damage and they over sedated her. I'm still angry! I just try to make the best of it when I visit, but mum mainly just sits and dozes or sits in silence while I struggle to think of things to say that might interest her, and then perhaps she'll repeat a word like 'desperate' over and over again in a high pitched voice. Of course I never find out what she's desperate about.

Thanks for listening! I know I go on a bit!

Erin x

Hi Erin, So often I read of the medical profession resorting to sedating Alzheimer's patients as a matter of course. Over six years ago my wife fell and suffered injuries. She walked into hospital, a month later she came out in a wheelchair. I kept insisting that they walk her daily. Each visit I found her asleep in a chair. When I attempted to walk her I got involved in a dispute with a nurse and was told they were walking her. My wife was a quiet gentle person and remained so during the Alzheimer's years. Only after I got her home did I discover they had sedated her during her stay in hospital. When I phoned them up I gave them a piece of my mind: "You must have been bloody sleep walking her!" The profession's approach I found failed to take into consideration the carer's frame of mind, the stress and depression they go through inhibits clear thinking. So it was in my case when I acceded to place my wife in a NH. Once again the practice was to dose her up on medication. A year of torment followed as I watched her approach death and the accepted answers to my questions went: "That's the way they go at this stage." The decision to take her home was a scary one, but one I knew I must take. The NH handed over a large paper bag full of different medications all of which I turned over to our local doctor, with the exception of a pain killer, I used till no longer required. When she started shaking I put it down to part and parcel of AD, but then it stopped after a number of days. It was withdrawal symptoms! From the day I took my wife home a great burden was lifted, I had to be clear thinking to take control and where a doctor was required I insisted on being involved in decisions. It was not unlike the treatment of a child with the mother being involved. Four years and eight months after I removed her from the NH I cared alone till her death. It gave me a deep insight to myself and the unnecessary suffering unknowingly inflicted on AD sufferers. I would not dream of calling myself an expert but I have been lucky to have seen the worst, and being capable of managing single handed the best years of this DD with my wife. Sorry to have gone on but I feel passionate about the way our loved ones are being treated, so many walking around in the dark. Erin I understand you anger only too well. May God give you strength in your time of need. Padraig

Thanks for your understanding replies, it's comforting to know others have gone through what I am now.

I felt soooo sad today when I visited, I think I'm grieving for the mum I had and the realisation that we'll never again to be able to have a conversation. She likes her hugs and kisses though, even if she does cover me in orange juice dribbles mixed with chocolate! But it's so frustrating and upsetting listening to her saying the same words over and over again, and looking worried and maybe in pain, and not knowing what she's trying to say. I suggest things, ask her what the problem is, but she ignores me and continues with the high-pitched moaning. And then suddenly she'll stop and use her normal, lower voice, to ask me a question. But immediately she'll go back to the moaning. Does anyone else have this going on? None of the other ladies seem to do this. I'm wondering if it's because if it's easier for her to make this high sound than to use her normal voice.

I went to visit a care home today and reserved a room for Mum so she should be moving there in the next week or so. I told the manager about my concerns about the sedation and she was very understanding - and then we left her office to see a row of five old ladies all dozing in their chairs! I didn't say anything, perhaps it's for the best if they can't do anything else and life has very little quality.

Thanks again for listening and replying.

Erin

Hi Lyn

Thanks for keeping in touch with me, I do appreciate it. I have been meaning to come back and tell you the latest news. I'm afraid my mum passed away a week ago, Monday 23 Feb, at 6.15 in the evening.

She was transferred to the nursing home on the 18 Feb and really she should not have been moved because she was not well. She was sleeping most of the time and just flickering her eyes open from time to time, and moaning a bit. The nursing home were immediately concerned about her and called her own doctor who stopped all sedation - at long last. They also weighed her and she was only 78lbs and was refusing most food and drink. Four days later the doctor was called out on the Sunday as the nurse said her heart rate was very fast and the doctor phoned me to say she had to go into hospital. I told him that she was not to be resuscitated and he said that it wasn't at that stage but that if she didn't go to hospital it would be. I argued what was the point as what would she be coming back to? But he was getting upset with me arguing against him sending her to hospital so I reluctantly agreed. Five minutes later he phoned back to say that the hospital didn't want her (!) as they'd only give her a tablet and she could have that at the home, so I was happy with that.

My husband and I immediately went to the nursing home and saw the doctor as he was leaving and discussed her pain relief and he agreed to top it up if necessary. Mum was looking very ill and grey and the nurses were trying to get her to drink something. Of course I thought if she'd been in hospital they'd have put her on a drip but then that would only have prolonged things and by this time I was just hoping she wouldn't linger to long. What horrible thoughts they are, to wish your lovely mother's life away but you all know it was because I love her. Her eyes flickered open and I am sure she knew me, her head nodded a wee bit when I asked if she was ok.

I went back the next day and met her own doctor who was very thorough but said it was only a matter of time as the tablet hadn't done much good and her heart rate was still very fast and she was dehydrated. A couple of hours later she'd gone, just before I made it back to see her. She went peacefully, no distress or pain, just stopped breathing. Six days short of her 93rd birthday. It's the funeral tomorrow. I've been so busy this past week it's kept my mind occupied, but when I suddenly see her nightdress, or her spectacles I am so sad. Next week I think the reality will hit me. But I try to concentrate on the positives, I had her for such a long time and I have such happy memories of a lovely lady. I have written the eulogy for the minister to read out - I began jotting down a few notes and it ended up a five minute speech! The minister asked me to put it in the first person for him to read out. I'd love to read it myself but I'd get choked, this is the next best thing.

Well I'd better go to bed now. It's good to share with you, I do feel I'm on my own sometimes, everything going on around me just the same as ever, but it's not the same for me. I still have issues with the care mum received in the health care system, and I wonder if things would have been different if I'd had the confidence to bring her home, but I'll never know now. Thanks again for your support.

Erin