My Mum was diagnosed with PD about 4 years ago in her late 70s. She is now 82. Following family conference, because she lived alone and mobility was reduced, it was agreed she would move in with me and my family(husband and daughter now 11 yrs). Early 2009 we started looking for a suitable house to move to with ground floor facilities for Mum. We moved in Oct 09 and spent next 6 months adapting part of house for Mum.
April 2010 she became more unwell and the move in was rather more hurried than planned but OK in that we were nearly ready and it had been talked about/prepared for over months. A couple of weeks after moving in she had a small stroke and was admitted to hospital. She was in hospital for 6 weeks because of delirium and general mental disturbance. Prior to this she had had episodes over a couple of years at least when she spoke nonsense for an hour or so. This was very worrying to whoever was there. I witnessed a couple of these. Phoned NHS Direct who weren't much help. She was better before got to point of A&E on each occasion.Once she was admitted to hospital in mid 2009 and was quite disturbed. I was on holiday at the time and she was OK once back home.
Episodes seemed to baffle GP, etc. I did some research and thought it was consistent with Lewy Body (LBD)but neither consultant nor GP in her old area seemed interested. She certainly showed only the merest indication of dementia prior to hospitalisation for stroke in 2010 - which we thought was part of PD. In hospital she was diagnosed with LBD and her medication changed accordingly.
The day she came home from hospital she was almost her old self again overnight.
Since then her decline has been terribly rapid. I think now that she probably had PD and LBD for some years before it was picked up - even though I know she kept going to GP over several years because she knew she wasn't 'right'.
On 12 Oct this year she had an episode which was far worse than previously. I went to work that morning having had a normal conversation with her and when I came home at 7 p.m. she was unwell and making no sense whatsoever. She did recover a bit over a few days but since then has been very confused indeed. Mobility was very poor and she kept forgetting to use her frame so I would find her walking round the room holding on to the furniture. She fell once (not hurt luckily and I was in house). I found her curtain draped around a heater in her room twice. Over the last 2 weeks she has become incontinent.
I work 4 days a weeks in a fairly intellectually stressful job with a commute. My husband works long hours. Our daughter also needs attention.
We have had carers coming in to get mum up, get her lunch and mid afternoon tea (and all to ensure meds taken on time) for over a year but it suddenly wasn't enough. The carers weren't always reliable and would be late which caused me a lot of stress wondering if they were coming or not. Mum would call me before they arrived in the morning (e.g. 5.30/6 a.m.)to help her on commode but had wet the bed a couple of times. She didn't want to go to bed until after 11p.m. and it would take about an hour to prepare her and get her in. Most of my evening was taken up with her calling me to help with changing TV channels and telling me things weren't right (because of confusion/hallucinations/visual dsyphasia), dealing with toilet issues and clearing up spillages. She couldn't always say what she meant and her speech had become largely nonsense words - with occasion hours of relative normality, usually in the morning. She does however, generally seem to understand what is said to her - although not always recognising who is speaking.
I just felt overwhelmed. I arranged respite care for 2 weeks pre Xmas in a nursing home which I selected as a possible long term place. She has taken it really badly since being there and deteriorated further. Can't walk, suddenly couldn't feed herself, very unhappy and terribly confused. She seems to be left alone in her room a lot (which admittedly she was here when we were all out during the day).
I just feel heartbroken that I have had to let her go. Miss her terribly and keep thinking of her there alone in her room confused and in a kind of nightmare. Spent the last three years preparing and then caring for her as well as I could and just feel guilty and bereft and angry that they don't care for her as well as I did. I do know I shouldn't feel guilty as have done what I could but the emotion is there! I know now that we cannot have her home here again to live. I have tried to talk to her but she doesn't grasp it and when I visit, asks when we are going to take her away.
It is an awful condition and so very sad.
Thank you for letting me share this. I am so heartbroken and this does help.
I just wanted to say that i am so very sorry for your situation.
Years ago, my father-in-law suffered from a series of strokes which left him unable to take care of himself and very confused. I arranged for him to come to a nursing home round the corner from myself and my husband (his son). I visited him every day..often two or three times a day but it never felt enough despite him not being my own father. I can only begin to imagine the pain you are feeling regarding your mum. I truly hope that it has helped you in some way sharing what you are going through on this forum.
You are obviously a very caring person and love your mum dearly but you do have to consider your direct family and yourself too.
It may be worth asking a neurologist to review your mum's medication if she is having hallucinations as these can be caused by side effects from some PD medication.
Thinking of you
Don't beat yourself up. You have tried, and you obviously love her still. Keep visiting and look after her granddaughter, that is what I will want my family to do when the time comes.
stop beetin yourself rearly have to let it go my sis realy ill going to loose her soon i got pd 10 years ago if i dwell on my self and my sis theres nothin forget it no it sounds harsh but u have to live for today life is rearly to short x
Thank you so much to those who have replied already. It is a comfort and my thanks and sympathies go out to you all. We are all in a challenging place or we wouldn't be on here and it is fantastic that so many are prepared to share their strength.
Hi ,I wont go into detail but my wife was in a similarposition with her mother ,although she felt so guilty 4 years on its been proved over and again that she made the right decision for all concerned, the people in these homes are trained to look after them,so know matter how much you may love someone ,hard decisions have to be made.
Hello Choogler, what a sad time for you.It's easy for us to say don't blame yourself but I guess it does'nt really help you. I only hope that when my time comes my children will be as caring and make the right choices for me.Ive been diagnosed for 11 years now and still only 62, my condition is worsening by the day and it scares me when I think of what is to come. I try not to but it's pretty hard to remain positive all the time, I like many others cry my tears alone, not wanting to upset our nearest n dearest.
I do hope that you can overcome your guilty feelings, I'm sure your mum would tell you the same, if she could. Take care
This time last year my brother and sisters and myself had organised for our 90 year old Mother to be admitted to a care home. Mammy was always a self sufficient lady, lived on her own since Daddy died. She had always said let me die in my own bed. It all got to much for my sisters and I lived away from home so was not much of a help to them at all. Before the day for her to go to the care home Mammy passed away in her own bed with my sister by her side. I guess Mammy got her wish.
I still feel that maybe had she been in the care home much earlier she still might be with us.
My point Choogler, is that we do what we do with the best intentions so although I am still today sad, I do wish Mammy had have been in that home.
I wish you and yours a peaceful Christmas
.. I cannot say do not feel guilty . The day I saw my mother into a nursing home , and then the three years she was there until she passed away was the saddest time I have ever had to go through . That was after she spent 5 months in quaranteen in hospital because of a very bad stroke . It's 5 years on and still feel the same , that is even though I know there was no other way.
However good the nursing or caring staff are it will never come up to the standard that everyone deserves .Some things you just cannot change ..
My husband and I visited the home daily . Feeding her and seeing to any of the things we were able to . WE knew nothing of Parkinsons had never come across ir before . During this time he was already struggling unknowingly with Parkinsons , but he battled on his GP had told him to get some physio !!!!!!!! As poorly as my mum was even she could see that something wasnt right with him and would ask me what was wrong with him . If I passed him a mint sweet would ask if it was his medication . When I told her it was a sweet she told me I was playing Charades lol ..
Eventually he got so bad that he would have to stay in the car while I saw to my my mum . One week before she died he was officially diagnosed with Parkinsons ny then it was too late to tell her.. So just do all you can and be kind to yourselves at the same time . No easy task .
Looking back I know it was the only thing we could do and would do it over agin but It STILLdoesnt stop me FEELING GUILTY .
The one thing that has come out of it is thatI recognise some of the symptons /problems that has arisen with Parkinsons are similar to what my mum went through during her stroke .This has helped me deal with them mmore easily ..
Be kind and give yourself some you time without feeling guilty
I pray I won't have to do it all over again one day
Absolutely heartbreaking. It belongs to this realm of nightmares that we all live in. I take my hat off to your courage and your feel for your guilt.
Please remember that if you are dissatisfied with the care she is receiving, in the current climate it would be quite in order for you to complain. It is bad enough that she is there in your eyes, you do not need the added heartbreak of feeling that she is not even well cared for.
Well, there you have it. GPs - great aren't they? Okay, I know some of them are, but otherwise, prepare for the worst.
I don't know what the home is like, the only thing is the alternative (your mum falling on the floor at home during the cold winter, no one to find out until too late) is far worse.
Although we might try to convince ourselves otherwise, we all know that these residential homes, however good their facilities and nursing quality, are to the new inhabitants strange new environments full of miserable old people with one foot in the grave, staggering about grumbling and frequently peeing themselves. We all know that the worst thing for PD is stress, and to take incomers away from everything they're familiar with (the family home they may have lived in for decades, all of their loved ones, pets, visitors, gardens, etc) forever, cannot fail to have a major psychological effect on them, and cause a massive downturn in their Parkinsonian condition.
They will have probably become used to being fussed over by relatives and friends who have loved them for years, and who well remember hundreds of good times when the patient was younger, bubblier and full of life. However dedicated, staff at these homes will have experienced none of these past joys, and cannot but view the newcomer as "just another old person to look after for a few years until their final demise." Now, instead of being surrounded by the family 24 hours a day they're being dragged away kicking and screaming to stay in the clinical blandness of this new place, and - if really lucky - getting a visit from one or two family members for maybe an hour a day. God how depressingly awful! These poor souls, who have more likely than not already lost their lifelong partners, have finally come to the climax of their lives. Having worked all their lives to build themselves adequate pensions, and prepare for long and active retirements, this is what it's come to. "My own family chucking me out to grass, where I won't be an embarrassment to them: a depressing sight around the house, and a pain to look after" many of them might find themselves thinking.
When my own time comes, if my family no longer want me around the house, are unable to organise their lives around my needs, or are unwilling to adapt their own lives sufficiently to make life better for me, rather than the other way round, that'll be the time to shuffle off this mortal coil. I have no intention of ending up in such an establishment; I will make alternative plans thank you.
As young(-ish) parents these (now) old folk worked their backsides off to raise us, the next generation. I remember my Dad taking on an extra evening job to support us and mum struggling with the copper and mangle to get the washing done. If it were a good year we might even get a week's holiday in a caravan at Walton-on-the-Naze (travelling by train of course: only the likes of doctors had cars in the mid-fifties). They did everything possible for us, sitting by our bedsides all night when we were ill, and saving a few extra shillings to get us presents at Christmas. And this all lasted for well over 20 years, with never a complaint.
Although I don't doubt it will be controversial and attract howls of derision from all quarters, I sincerely believe that families should do everything in their powers to look after the old generation until the bitter end, and not let them down by farming out the "problem" to third parties who, being unrelated, cannot offer the love, respect and dignity these folk have the right to expect before the Grim Reaper's arrival. If that means a change of jobs, a delay in starting college or giving up your summer holidays, so what? Don't be so selfish, these folk nurtured you from the womb.
They'd have done it for you without a second thought.
Thank you again to all those who have replied to my post.
I agree with pretty much everything said, apart, of course from Ray of Sunshine's conclusion.
There was a time when I would have agreed that caring for a loved one at home should take priority over everything else. There must be many people reading this who have given up a lot to look after their partner's, parents or other dear ones. Here is the big but: this is not right for everyone. It's not right for every carer and it's not right for every care needer.
Perhaps if I had been older or younger (I am 55 - too young to retire but too old to be likely to get another equivalent job if I give up my public sector career), single and without children (my husband and child deserve some my attention - I don't want a divorce or a bitter daughter) I might have felt differently. It's not possible to choose when these things happen. We just have to do our best when they do.
I love my mother but, and this is hard to say now, she is not my life. My husband, child and our future must take priority. I already work part time and need the money. So I couldn't change my job, as you suggest, especially in these times when I am lucky to have one. Even if I did give up work, Mum needs 24 hour availability of care. She has lost most of her sense of time and boundaries around night time. I would still have to 'run' the house and family. I had already started to feel the effect of the physical side of less than good night's sleep and the level of menial work in the evenings plus, probably more telling, the emotional and psychological impact of almost 24 hour worry.
I think I have done the right thing. I looked after Mum as well as anyone could look after someone, for just under two years. I would like to have kept her here until the end, or close to it but I couldn't. Part of me feels I have failed her but the more sensible part says, 'No, you did your best and the time has come'.
The quality of care in homes is very variable I believe. There are things I don't like about the nursing home Mum is in and other things I do like. The trouble is, Mum has a degree of paranoia now and, sadder than ever, thinks all the staff are being cruel to her. This is quite counter to the evidence when I go there.
I am still heartbroken. PD is dire and having LBD as well is the icing on the sh***y cake.
My admiration and love to all those who have made sacrifices to care for their loved ones. It is worth it and a privellege to be able to do this, knowing that it is the right thing for you and for them.
Ray of Sunshine doesn't allow for those whose parents might not deserve the very best. My mum twice
prevented me from staying up to watch Live and Let Die
when I was a kid, this in the days before video and DVD. This memory gets me through when I think of her having a bad time...
Alright, alright, just trying to leaven things with a bit of humour.
Choogler, You've done you're best, please dont feel guilty, guilt is a useless mind, you have done you're best and you'r best is good enough, you can still visit your mother and 'look out for her' at the home. and so you are still trying to help her. Sometimes we just cannot do anymore. Sometimes it just isnt possible to take away someone else's suffering, we can only do what what we can. Life is often a bit of a mess.
Ray of sunshine has said what she said but not all situations are the same it just isnt possible to know what we will do until it happens to us.
Have you tried just sitting by yourself, quietly and sending out some calming thoughts to your mum and just send a big wish that she can feel calmer and more relaxed, lewy bodies and all.
Love and blessings sunray
Had to send you a little message x
Not been on the forum for a while,my o/h has pd well advanced now sadly although he is still 'young'.
The reason I have been away is that at the end of Sept my lovely Dad was given a diagnosis of a terminal cancer that had spread. We were all devastated and as my Mum had also died nearly ten years ago with the dreaded disease it was even more devastating.
My Dad the proud man that he was had tried to suffer in silence not wanting to burden me 200 miles away with o/h not good at this time.
For a couple of months I did know ( as i work in palliative Care) that time was short but doubted my thoughts as various medics tried to say that he had longer.
I made a tough decision to support my Dad luckily doing what i do it was easier to take time out and be with my Dad he at first worried about this but I knew it was his wish to die at how but not to the detriment of mine and my brothers health and jobs.
A few weeks ago after many sleepless nights with o/h (he gets awful night terrors and worrying that my Dad was safe getting up to the loo. I felt ' I can't do this'
As i knew that time was short I carried on and sadly my special Dad sadly died 03/12/11 and is now at peace with my Mum x
If this level of support was requiered for longer I would not have sustained it. also more importantly Dad would have dreaded going into care he would have hated more being a burden to his loved ones , we always reassured him that he was not and definitely not our thoughts but you can't take away his opinions.
I respect ROS opinion but we are not all the same I know that I would not want my family to do this for me for any length of time and if you do feel an obligation surely that is not bourne of love.
Sorry for the rant x
I have posted on this forum several times about the difficulty I went thorough caring for my mother who refused to leave her home, claiming that she could cope with the assistance of carers and myself.(she lived approximately 20 minutes walk away from myself). It took a midnight walkabout by her , a phone call to myself from a passing stranger (she was able to give him my name and number) her admittance to A&E , a diagnosis that she had had a stroke for it to be taken out of my hands. We , to the best of our ability (my sister & I) found the most appropriate care/nursing home. It was fairly close to my home My sister lived hundreds of miles away.
My mother did not have pd She had terminal cancer. I had pd.
My mother died in the nursing home nearly 3 years ago. To this day I do not know which was better for either herself or myself - trying to support her in her own home or in the nursing home. All I know is that I did the best that I could. That is all anybody can do.
Hi Choogler & everyone.
My post was of course not intended to criticise anyone specific, or suggest that they should be putting in more effort, or were acting indifferently towards their own parents. It was merely an attempt to broaden the discussion, which until recently seemed to have been made up of contributions from carers who felt awkward about a decision which needed to be faced in the near future, or which had already been made and implemented and was now causing conscience problems. There seemed to be little input from patients being transferred to such a new institution: probably one of the most major decisions about the rest of their lives to which they themselves will have little input.
Of course most elderly parents go along with whatever decisions their offspring settle on, making all the appropriate noises like "It's for the best", "It looks a lovely place", "The staff seem very friendly" and "Oh look, I've got my own emergency cord - that's safer than at home isn't it?". After all, they don't want to cause a fuss. But what are they really thinking? You will never know.
When I was young most nursing homes were run by the NHS at suitable locations (suitable to the "customers", that is, not some faceless Trust), and funded centrally. Patients came and went as their health dictated: perhaps a 3-month recuperation by the sea, maybe a longer period near a pleasant town or not far from one's family. Possibly, of course, for their "full duration", at which point the nurses and administrators were trained in what needed to be sorted out, and how to offer help unintrusively and sympathetically.
What ordinary folk never had to concern themselves with were associated costs or availability (all were planned and budgeted for out of central taxation), or the risks associated with privately run homes and similar establishments. Nowadays the next generation can be cleaned out by the costs of care homes for their ageing parents, losing family homes and inheritances despite having paid their dues all their lives.
When the NHS and pension systems were introduced, we the public were assured that if we paid our due taxes now, in order to look after those currently old and infirm, we ourselves would be well looked after when our time came along. Oh really?
When Mrs T and her crazy cohorts decided that these services would be better off provided by the private sector, with contracts being awarded to the lowest bidder, couldn't anyone foresee what this would lead to? Low pay, demotivated staff, H&S/fire hazards, poor meals, dirt & grime, poorly-trained employees (unchecked for immigration or criminal irregularities) and unhappy neglected patients lying in wet & stained bedding are now the norm, it seems.
Nurses now work for private agencies (paid for by us) and work temporary contracts which ensure they never get attached to specific establishments or patients, and so get no continuity of employment, sick pay, holiday, employment security or pension. And yet nurses now cost their "hirers" more than twice what they used to in real terms.
Oh well, that's progress.
I tend to agree with many things Ray of Sunshine says, nevertheless, I cannot be so bitter. It is true that things aren't as they were promised when we were younger but most of us are fortunate enough to afford reasonable care or have it provided. I have heard the stories about poor hospital care, etc. I did experience a dreadful ward once as a visitor (not to my mother). We must not believe all we read in the papers. I still believe that the worst care, I mean cruel and/or neglectful, is unusual. Dreadful things go on and it is right not to be complacent and to be vigilant and try to do something about improving the plight of those who need care. There are however, some wonderful examples of care around.
Having said this, I think there are, 'sins of omission'. The thing that I am most upset about is that the home my mother has gone into seems to leave the residents alone in their rooms most of the day. They 'get them out' for some meals and then 'put them back again'. There seem to be some organised activities in the week but not every day. Also, it is not as regimented as I expected. Personally I wouldn't want it to be but Mum, in common with many in her generation, is used to getting up and dressed early and having breakfast before 8 a.m. Also, older people, like children, seem to welcome routine and it worries me that when my brother visited a couple of days ago at 10.30 a.m. Mum still wasn't dressed. I complained and they said another resident was ill so they were behind that day.
Now that she is there, I think it would be the wrong thing to move her to another home unless absolutely necessary. She has found the upheaval so traumatising I don't think she could cope with another. So will have to see how it goes. Not even sure now if she will cope with planned visit home at Christmas.
Back to Ray of S., it is thinking about how she feels that I find the hardest thing of all. The trouble is that her condition is such that she cannot express herself and also that her reality is skewed anyway. It is another one of the awful things about LBD.
Your couple of chapters could be talking about my father but he is 79yrs.
Literally every-thing you wrote could be associated with my father,if there were no name and people who I know read it they would assume they I had written it about my father.
I am sorry to hear your news.