Should I bring Mum home for Christmas?

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Erin01
New Member


Date Joined Dec 2008
Total Posts : 7
   Posted 12/14/2008 7:27 PM (GMT -7)   
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

tyno3
Veteran Member


Date Joined May 2008
Total Posts : 1081
   Posted 12/15/2008 6:01 AM (GMT -7)   
Wow, that's a toughy. I can't even begin to think what to do. Is there a particular nurse who works with your mom at the home, you might consult. My stepmom is in a nursing home (not alzheimers, 3 strokes and kidney failure). Getting her anywhere is a heck of an ordeal. However, there is a primary caregiver, nurse at the home that I go to for her opinion, on Stepmom's care. My Dad and I live together, I'm his caregiver, he has Alzheimers and is becoming despondent, doesn't notice his surrondings, doesn't remember his farmhouse he and I moved out of in September. Gets whereever ( my name, doesn't remember his wife, doesn't remember his other children's names, and so on)  He's just really jumbled up. Doesn't seem to recognise his surrondings. Would the doctors be able to advise?

Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23417
   Posted 12/15/2008 6:37 AM (GMT -7)   
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.
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CharleyRice1931
Regular Member


Date Joined Apr 2006
Total Posts : 397
   Posted 12/15/2008 10:01 AM (GMT -7)   
Hi Erin01, My wife spent one year in a NH before I could no longer take the stress and hurt of watching her become worse. I can clearly recall the first day I took her out for a day. It was Christmas day, I took her to our daughter's house for a the day. I chose to make a DVD of her that day, such a very sad sight. She could not speak and could just about move one arm. Looking back I know I did the right thing and I agree with Red. After that I took her home first for a day then a weekend and finally for good. It was just in time, as I nearly lost her so many time over the following five years. I was always driven by pure natural instinct in my caring for my her. When I look back, I never cease to be amazed at how doctors and nurses perescribe drugs for every thing. Once I took control of caring on my own I stopped all medication with the exception of a laxative in her drink. So very often I looked and found the underlaying causes for problems. Like many others in the early stages I was so stressed out I was incapable of thinking clearly. Strange as it may seem I now thank God for the absence of nurturing in my upbringing, nature provides us with instinct. I was indeed privileged to have found that my wife in spite of her lack of speech and movement could communicate by touch and through the eyes. The emotions were all there. It so hurts and angers me to read people write 'there is nothing there', how painful that must be for a loved one. When children can sense conflict between parents with age that sense becomes blurred: we are all grown up children! The best thing I said to a doctor who though it was wonderful the way I chose to look after my wife on my own: "Don't dogs look after their pups". I feel better for getting that off my chest.
May your God go with you. Padraig

Howlyncat
Elite Member


Date Joined Jan 2005
Total Posts : 24909
   Posted 12/15/2008 3:08 PM (GMT -7)   
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
 DX: Crohns,Pyoderma Gangrenosum,Anxiety/Panic,
Fibro & Other DD

Donate at  www.healingwell.com
 
                               Moderator@Alzheimer's..
    CO Moderator @ Anxiety and Panic........Co Moderator   @ Crohns                    
                            ~ FIGHT the FIGHT with all YOU HAVE ~
               Look For The GOOD, Even At Your Lowest
  We Have Anxiety and Panic...................Anxiety and Panic DO NOT Have us         
   
..........LYN


Erin01
New Member


Date Joined Dec 2008
Total Posts : 7
   Posted 12/15/2008 4:30 PM (GMT -7)   
Thank you all for your wise words and advice. I'm sitting typing this with blurry vision, it's touched me just to read what you've written. I cry easily these days, and shout easily as well which I never used to do. My poor husband thank goodness is very understanding.
 
Well I'm definitely going to try to take mum out for a wee run in the car first, hopefully starting tomorrow so I'll take her big warm coat and rug with me as it's freezing tonight. If we get on ok with that there is a small restaurant not far away I'll take her to for coffee and then all being well I'll take her for Christmas. I know you're right, even if she can't express it I'm sure she'll like the attention. It's difficult though when she's asleep so much of the time. I'm so annoyed she's sleeping away the short time I have with her, not with her of course but with the psychiatrist.
 
BTW she's not on any AD drugs now - she was on Memantine which she's been on for a few years now but in the summer her psychiatrist said it probably wouldn't be working after all this time and we might as well stop it. No adverse affects were mentioned and I didn't ask. I was advised to reduce the dose gradually over four weeks, which meant that she was finally off them at the beginning of October, just when she fell and went into hospital. And then they said she was hallucinating (she's been doing this for a while but so what?) restless (she wanted to walk around, they wouldn't let her) and aggressive (she's deaf as well as having AD and they shout in her face and then immediately do something to her and she is taken by surprise and being sedated she was lashing out).
 
I've been blaming her change in behaviour on sedation but now I'm wondering if the withdrawal of Memantine has anything to do with it. I read something recently on the net about a lady whose behaviour got worse when Memantine was withdrawn eg aggression, depression, and she changed back when it was restarted. However, this story was on a Merck site so not sure if I should believe it and I know Mum's doctor won't! Has anyone got any experience of this? Mum is now on two dozes of Trazodone and two of an atypical anti-psychotic, Amisulpride, which I believe is not approved by the FDA in the States. Amisulpride is supposed to have some anti-depressant effects, and Trazodone is sedative, anxiolytic and anti depressive. And it also has lots of side effects - confusion! slurred speech, drowsiness, difficulty in concentration, lethargy, and lots of others.
 
If I were brave enough I'd take Mum home and look after her myself but I'm not good if I miss too much sleep and they tell me she gets up a few times a night. But it remains a possibility.
 
I'll let you know how I get on with trying to take her out. I'm hoping to see the doc on Friday so will discuss it with her. It was a trusted nurse who was putting the pressure on me!
 
Thanks again
 
Erin

Howlyncat
Elite Member


Date Joined Jan 2005
Total Posts : 24909
   Posted 12/16/2008 3:50 AM (GMT -7)   
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
 DX: Crohns,Pyoderma Gangrenosum,Anxiety/Panic,
Fibro & Other DD

Donate at  www.healingwell.com
 
                               Moderator@Alzheimer's..
    CO Moderator @ Anxiety and Panic........Co Moderator   @ Crohns                    
                            ~ FIGHT the FIGHT with all YOU HAVE ~
               Look For The GOOD, Even At Your Lowest
  We Have Anxiety and Panic...................Anxiety and Panic DO NOT Have us         
   
..........LYN


stkitt
Forum Moderator


Date Joined Apr 2007
Total Posts : 32602
   Posted 12/16/2008 3:29 PM (GMT -7)   

Erin,

I am so glad you are looking at ways to bring your Mom home for Christmas.  What a wonderful daughter you are.  My inlaws took G-ma to the nursing home and after that I don't remember anyone trying to take her home.  I guess they were afraid as before she lost her memory completely she would get paranoid and belligerent.

They did bring her to their house when Gpa died and she walked the house day and night looking for Frank, her husband.  That choked me up as it is such a horrible disease and to watch someone who was so bright and witty, such a good person have this happen to them is heartbreaking. My MIL is crippled with arthritis and she was not able to keep Gma at home.

WE all went to visit Gma in the nursing home and my MIL went everyday to feed her lunch. We took her a Christmas present which she had no idea what it was for but the bright bow lit up her face.  She kept turning it over and looking at it.  I know somewhere deep down it triggered a memory from days gone by.

Let you Mother see the colors of Christmas if it works out.  No guilt for you if it does not.

A very special holiday to you.

Hugs

Kitt


 

Kitt, Co-Moderator: Anxiety/Panic & Depression
& GERD  Forums
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Erin01
New Member


Date Joined Dec 2008
Total Posts : 7
   Posted 2/2/2009 5:23 PM (GMT -7)   

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

 


tyno3
Veteran Member


Date Joined May 2008
Total Posts : 1081
   Posted 2/3/2009 5:30 AM (GMT -7)   
My heart goes out to you, Erin, as I have just recently trodden the same path. My Dad was admitted to hospital a month ago, he just became so aggressive, and I could not manage him. It got so I was sleeping with one eye open and my foot on the floor. Soooo, having been the second time, the Police had to be summonded, they accompanied us to emerg, where they held him for 72 hours, observation. The consensus amongst all doctors was, he'd have to be placed. I had spent two solid years standing firmly against institutionalization. It broke my heart. I would not bring him home, it would just add to the confusion. I go there to see him, I also get him and take him to see his wife in another home, about twice a month.

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CharleyRice1931
Regular Member


Date Joined Apr 2006
Total Posts : 397
   Posted 2/3/2009 7:30 AM (GMT -7)   
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

Howlyncat
Elite Member


Date Joined Jan 2005
Total Posts : 24909
   Posted 2/5/2009 9:25 AM (GMT 0)   
Welcome Erin
I am so sorry all this is going on
Charlie is right
AD ppl do not have to be medicated to the point of being unable to do anything IMHO
They are still in there and they ned the power of touch and the love always..........

STAY with us

LYN
 DX: Crohns,Pyoderma Gangrenosum,Anxiety/Panic,
Fibro & Other DD

Donate at  www.healingwell.com
 
                               Moderator@Alzheimer's..
              CO Moderator @ Anxiety and Panic........Co Moderator   @ Crohns                    
                            Keep The Fight Going..Or YOu Will Lose
               Look For The GOOD, Even At Your Lowest
  We Have Anxiety and Panic...................Anxiety and Panic DO NOT Have us         
   
                                     LYN


Erin01
New Member


Date Joined Dec 2008
Total Posts : 7
   Posted 2/5/2009 1:08 PM (GMT -7)   

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


Howlyncat
Elite Member


Date Joined Jan 2005
Total Posts : 24909
   Posted 2/27/2009 4:24 PM (GMT -7)   
ERIN
I am just wondering how things are going with you and your MOm
I too was an emotional person for sure while all this was going on with my parents

KNOW you have done all you can and that you will continue to do all you can for her

Doctors sometimes just IMHO anyway are not always into some of the issues dealing with AD
They also need to be educated more as this DD is one bleeding hades of a thing to watch our loved ones go thru
YOU are a great daughter.......KNOW that

Post when you can k

God Bless
LYN
 DX: Crohns,Pyoderma Gangrenosum,Anxiety/Panic,
Fibro & Other DD

Donate at  www.healingwell.com
 
                               Moderator@Alzheimer's..
              CO Moderator @ Anxiety and Panic........Co Moderator   @ Crohns                    
                            Keep The Fight Going..Or YOu Will Lose
               Look For The GOOD, Even At Your Lowest
  We Have Anxiety and Panic...................Anxiety and Panic DO NOT Have us         
   
                                     LYN


Erin01
New Member


Date Joined Dec 2008
Total Posts : 7
   Posted 3/2/2009 5:36 PM (GMT -7)   
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
 
 
 

Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23417
   Posted 3/2/2009 6:40 PM (GMT -7)   
Oh Erin, I am so sorry to hear of the loss of your mother. I know these days must be tough but I hope you know that she is in a better place now - completely whole. My deepest condolances.
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Bentyl, Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Year-round allergies-Singulair, Zyrtec~Secondary Reynauds Syndrome-'04-Norvasc~Sacroiliitis-epidural injections~bulging and herniated discs C5/C6 & C6/C7~3 epidural injections-second series starts 2/17, OA in my fingers -Celebrex, Tylonel Arthritis and Voltaren Gel
To help Healingwell - click here: DONATE
 
 
 
 

 
 

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