 |
 | Home | Contact Us | FAQ | Search & Site Map | Link to Us |
 | Sign In | Join | Other 45 Sites in Network |
Medical Forum / Diseases and Disorders / Alzheimer's / February 2006Hospitalisation
Hello I have never posted on this forum before but would appreciate some advice. My mother has had young onset Alzheimers for some time now. She has experienced a fairly gradual decline but over the last two months she has deteriorated markedly. Two weeks ago she was admitted to a high dependency EMI ward and we have been told she will never come home. I live in Live in London and my parents live in the North-East. I was up for Christmas and she was bad. However I went up this week-end and was shocked and distraught at the speed of decline over the past two weeks. She is now unable to walk without the assistance of two nurses. If they decide to walk her. Most times they just wheeled the seat she was sitting in to the toilet which worried me because I am concerned that her muscle strength will decline very quickly. The other thing was that she is now unable to drink without help. She is given all drinks from a babies beaker. The worst thing was that I think she can't remember me. I suppose that is the hardest thing to cope with. That and worrying about my dad, of course. What I would be interested to know is has anyone else experience this rapid decline following hospitalisation? The acting ward manager explained the deterioration as mam experiencing mini strokes, but to me this seems as a massive coincidence. I am a Lead Nurse for adult mental health and have worked as a mental health nurse for nearly 20 years and have never experienced anything like this. I would really appreciate any information or advice on how to deal with this horrible situation. Many thanks Steve > Hello > I have never posted on this forum before but would appreciate some advice. [quoted text clipped - 24 lines] > Many thanks > Steve Steve, first of all let me express my sympathy to you and your family in dealing with this awful illness. If I get what you are saying, I think you are attributing her decline somehow to the fact she is hospitalized, whereas it strikes me as more probable that it is the other way around, that her sudden decline has in fact brought about her hospitalization. Early onset alzheimers is often characterized by a sudden decline, from what I have heard. I am not an expert, just a person who took care of someone with the illness for a couple of years. If I were you, I would try to get some clearer answers from her doctors. Her illness could have been exacerbated by a stroke, or it could simply be the rapid progression that sometimes does happen with early onset alzheimers itself. At any rate there is no nice easy way to say it, but this is a horrible illness that robs people of all their cognitive abilities and in later stages, their motor abilities as well. There are some good books out there that are very helpful in understanding how to cope with it, for instance there is "The 36 hour day" which is available in paperback now, but it is a very good reference. For what it is worth, here is the website for this newsgroup, and you might want to read awhile there, and bookmark it. http://www.muggsmulcher.com/kstuff/a.s.a/intro.htm  SignatureBest Regards, Evelyn (to reply to me personally, remove 'sox') > > Hello > > I have never posted on this forum before but would appreciate some advice. [quoted text clipped - 24 lines] > > Many thanks > > Steve Thats pretty bad mate, cant be easy, i cant help but others im sure can here, as my granddad is not too bad (but bad enoiugh it hurts me like hell). Best of British mate. Jules > Hello > I have never posted on this forum before but would appreciate some advice. [quoted text clipped - 13 lines] > beaker. The worst thing was that I think she can't remember me. I suppose > that is the hardest thing to cope with. perhaps for you at the moment yes, but if its any consolation, which it probably isnt, it could have been a lot worse, you have only to read the stories here. Focus on the fact that she is not distraught and hopefully is content??? >That and worrying about my dad, of course. Most important > What I would be interested to know is has anyone else experience this > rapid decline following hospitalisation? > The acting ward manager explained the deterioration as mam experiencing > mini strokes, but to me this seems as a massive coincidence. I am a Lead > Nurse for adult mental health and have worked as a mental health nurse for > nearly 20 years and have never experienced anything like this. Steve, I have seen this with a couple of people in the home my father is in, most seem to have a very gentle decline, not much change from one month to the next, but I have seen two with extremely rapid deterioration, both of who died within maybe 6 months of entry to the home. Both of these were relatively young (late 60's, early 70's at a guess) compared to most of the other residents. Not sure if that age counts as EOAD though. Anecdotally reported here, EOAD does seem to have a faster and more rapid decline. Mini strokes could of course also cause this (and may have in the people I mentioned I dont know) , some people seem to get lots of them. > I would really appreciate any information or advice on how to deal with > this horrible situation. Focus on your father. And consider yourself lucky you didnt have psychosis, agressiveness, extremes of behaviour to cope with from your mother, or if you did its all over now. With this disease, IMHO, quicker is better, much better. SignatureTumbleweed email replies not necessary but to contact use; tumbleweednews at hotmail dot com > Hello > I have never posted on this forum before but would appreciate some advice. [quoted text clipped - 23 lines] > Many thanks > Steve Has she been evaluated for Mad Cow disease? Had a brain MRI? best, AW Steve, my mother in law had the later onset version, and she had no vascular disease or strokes we were aware of, but her disease did not progress in a smooth curve. She would very slowly and gently decline or stabilize for extended periods of time, followed by rapid decline, and then a new plateau. Any stressor at all would also exacerbate her symptoms - minor health problems would often really set her back mentally - and sometimes we would see the cognitive decline before we realized she was ill (bladder infections are a common culpret). Some of the permanent losses were quite sudden - for example, she lost her ability to speak quite abruptly over a period of a couple of weeks. Before that, okay , after that, nothing but garble with odd phrase that made sense. I also very strongly got the sense that she reached a certain point in the illness where she had run out of surplus capacity and duplicate circuits in her brain - so after that point every single neuron that winked out meant the death of some ability. It sounds like her ability to coordinate movement is going, so muscle strength no longer matters - i.e. even if she had strong muscles, that would not return her control over her body. I know this is very hard - this just isn't a disease like any other. She may stabilize, she may rebound slightly, but generally this is a one way slide down the hill. M. Steve, my mother in law had the later onset version, and she had no vascular disease or strokes we were aware of, but her disease did not progress in a smooth curve. She would very slowly and gently decline or stabilize for extended periods of time, followed by rapid decline, and then a new plateau. Any stressor at all would also exacerbate her symptoms - minor health problems would often really set her back mentally - and sometimes we would see the cognitive decline before we realized she was ill (bladder infections are a common culpret). Some of the permanent losses were quite sudden - for example, she lost her ability to speak quite abruptly over a period of a couple of weeks. Before that, okay , after that, nothing but garble with odd phrase that made sense. I also very strongly got the sense that she reached a certain point in the illness where she had run out of surplus capacity and duplicate circuits in her brain - so after that point every single neuron that winked out meant the death of some ability. It sounds like her ability to coordinate movement is going, so muscle strength no longer matters - i.e. even if she had strong muscles, that would not return her control over her body. I know this is very hard - this just isn't a disease like any other. She may stabilize, she may rebound slightly, but generally this is a one way slide down the hill. M. Thanks, everyone, for your responses. I was beginning to think there weren't many nbice people in the world! I spoke to my boss who specialised in emi and she's given me some comfort as well as some of the comments I got back. Mam had a chest infection when she went into hospital and she was also badly constipated. I think these probably have contributed to her confusion / agitation. Throughout the illness her cognitive and motor abilities have been in decline whilst her awareness and memory have remained fairly stable. She knows she's ill and in hospital and is very angry with Dad, although she said she stil loves him. I was connvinced it was DLB but we have had a second opinion and we have been told there is no doubt it is Alzheimers. I have asked for her to have a functional assessment by an OT and her mobility to be assessed by a physio. I have also asked them to do standing exercises if she can't walk to help with her balance and motion sickness. They are probbly relieved that I live 300 miles away. I went down to the west end today and got 36 hours.It's very good but I started to cry on the bus when reading it! Should pull myself together as I'm back at work.....I'll probably start to blubber in a meeting on hospital cutbacks! Thanks again for all your kind comments, it was very kind Steve > Steve, my mother in law had the later onset version, and she had no > vascular disease or strokes we were aware of, but her disease did not [quoted text clipped - 24 lines] > > M. > I have also asked them to do standing > exercises if she can't walk to help with her balance and motion sickness. Steve, the chance of this helping her improve aren't very good, especially if it upsets her in any way. The fact is that her brain is deterioriating, and the spare neurons that we all have have been used up, and as the remaining ones go, so do their functions. Exercises are not going to cure her deteriorating brain. Please take my previous suggestion of contacting your local Hospice organization for grief counseling. When I first learned about AD, it was a friend's mother. I told him I was sorry to hear about his mother's death, and he told me that she had really died about 2 years earlier when she no longer recognized any family members. Hospice counselors understand this, and can help you deal with your anger over what's happening now and fear of what's coming. You should also suggest that your family call their local Hospice and ask for assistance. Dennis wrote - > Please take my previous suggestion of contacting your local > Hospice organization for grief counseling. When I first learned > about AD, it was a friend's mother. I told him I was sorry to [quoted text clipped - 6 lines] > You should also suggest that your family call their local Hospice > and ask for assistance. I agree whole heartedly with Dennis' comments. SignatureA R Pickett aka Woodstock "Sometimes the facts threaten the truth" Amos Oz, prize winning Israeli author > What I would be interested to know is has anyone else experience this rapid > decline following hospitalisation? [quoted text clipped - 4 lines] > I would really appreciate any information or advice on how to deal with this > horrible situation. First of all, the decline in Early Onset AD is considerably faster than in AD that starts in folks in their 80s and 90s. Are you certain the deterioration was *after* the admission? I would expect that the sudden decline would have been the *cause* of the hospitalization, rather than the other way around. It seems like you're having a real problem accepting what's happening, but denial is not a river in Egypt! If she had high blood pressure, and part of her dementia was due to vascular issues, mini-strokes could indeed lead to sudden deterioration. That's what happened to my mother, she thought she had taken her diuretic when she hadn't, her blood pressure shot up, and she had (probably several) ministrokes, which increased her confusion. My advice is to accept it, and if she's having trouble swallowing, to accept that the end is near. If you have a local Hospice organization, contact them about assistance (they will work in hospitals as well as homes) and for yourself, about grief counseling. They were a great help to my family. The sudden deterioration was after her admission. Mum was getting a lot of care at home because dad is entitled to the ILF and was paying for care directly. Her carer, my dad and other friends and relatives were astounded by the pace of decline over a few days. I have accepted that my mother probably has less than a year to live and have decided to access some kind of bereavement counselling through the staff support service at work. However, as a mental health nurse of 20 years i know it is essential that staff on the ward attempt to sustain the skills and abilties remaining for as long as possible. It's about empowering the service user. The 36 hour day sort of backed that up by saying it's important to eliminate all physical causes of a deterioration in mental state and abilities. I'm not in denial. I have worked with many people with Alheimers and am aware of the way the illness develops...I forgot to say that my Gran, her sister, brother and father all died of Alzheimers. A fairly worrying trait for my sister and I. Once the physical routes have been tried I'll quieten down a little. I'm just not prepared to give up on mam whilst she still has some abilities left. Best wishes >> What I would be interested to know is has anyone else experience this >> rapid [quoted text clipped - 29 lines] > work in hospitals as well as homes) and for yourself, about grief > counseling. They were a great help to my family. > The sudden deterioration was after her admission. Mum was getting a lot of > care at home because dad is entitled to the ILF and was paying for care [quoted text clipped - 20 lines] > just not prepared to give up on mam whilst she still has some abilities > left. Hi Steve......Do what you need to do. Perhaps there's another cause but in the end you still have the symptoms to deal with and the probability that it is what it appears to be---Alzheimer's. I lost the mother that I once knew to dementia over 12 years ago. She's still here and her illness is in an extremely slow decline. I know if she had a choice about this in the beginning she probably would rather go sooner than later but there's no choices. Just when I think I've grieved for the mother I lost something happens to take away the new mother that I had gotten used to. I start to grieve again. It's a painful process as we all here know. The anger, the denial and our own uncertain futures are all part of it. I always liked the following..... God, grant me the serenity to accept the things I cannot change; the courage to change the things I can; and the wisdom to know the difference. A lot of support groups use this prayer and I certainly understand why........June > The sudden deterioration was after her admission. Mum was getting a lot of > care at home because dad is entitled to the ILF and was paying for care [quoted text clipped - 7 lines] > staff on the ward attempt to sustain the skills and abilties remaining for > as long as possible. It's been our experience that dehydration can bring about a very rapid decline in mental functioning. You might suggest to her Drs that she receive IVs for a few days and see if that perks her up. best, AW > You might suggest to her Drs that she receive IVs for a few days and see if > that perks her up. provided that she doesn't rip them out, as my mother did! I certainly will access grief counselling. I get the feeling that people think I'm in denial about mam's situation. I accepted this week that mam is dying of Alzheimers. That thought hit me like hot poker. What I'm saying, from a mental health nursing perspective is this: mam's sudden deterioration coincided with a chest infection and severe impaction. These are both know to cause excessive agitation and confusion. The signs are that it was not a stroke and she remains toxic from her infection. As a rule of thumb, in medicine, it takes an individual with a dementing illness approx one week per day of infection, to make some sort of recovery. The 36 hour day backs up the idea that a doctor should explore all physiologial avenues. They haven't even checked the possibility of hair line hip fracture following all her recent falls at night.They just automatically prescribe Paracetamol and administer it if her BP goes 10% over it's usual rate. I e-mailed mam's primary nurse and told her what I'd like doing. A bit cheeky but she's doing what i asked because I explained I am a modern matron with loads of experience in mental health. Once the physiotherapy and OT reports and physical exam tell me she has lost her skills I'll but out.........then I have to go to a meeting with my family and medics and decide whether she's for rescusitation.....all this plus a job interview, a move to liverpool and a house to sell! Trying times indeed! >> You might suggest to her Drs that she receive IVs for a few days and see >> if >> that perks her up. > > provided that she doesn't rip them out, as my mother did! >I certainly will access grief counselling. I get the feeling that people >think I'm in denial about mam's situation. [quoted text clipped - 19 lines] > this plus a job interview, a move to liverpool and a house to sell! Trying > times indeed! Hang in there. It does seem like when it rains it pours..........June >I certainly will access grief counselling. I get the feeling that people >think I'm in denial about mam's situation. [quoted text clipped - 19 lines] > this plus a job interview, a move to liverpool and a house to sell! Trying > times indeed! Moving/selling house is a very stressful situation all by itself. Take it slow and try not to take on too much at a time. Hope it all goes smoothly for you. SignatureBest Regards, Evelyn (to reply to me personally, remove 'sox') > then I have to go to a meeting with my > family and medics and decide whether she's for rescusitation why would anyone want to prolong that misery? my living will says not to revive me if i'm going to just deteriorate slowly. >> then I have to go to a meeting with my >> family and medics and decide whether she's for rescusitation [quoted text clipped - 3 lines] > my living will says not to revive me if i'm going to just > deteriorate slowly. I would definitely agree. Let me go back to the universe, or the void, or whatever one wishes to call it, rather than to suffer vain attempts to prolong the misery, were I to develop alzheimers. SignatureBest Regards, Evelyn (to reply to me personally, remove 'sox') > I would definitely agree. Let me go back to the universe, or the void, or > whatever one wishes to call it, rather than to suffer vain attempts to > prolong the misery, were I to develop alzheimers. Even my mother in the latter stages of Alz says let her go. She asked me the other day where she could sign so she wouldn't be kept here.....June >> I would definitely agree. Let me go back to the universe, or the void, >> or whatever one wishes to call it, rather than to suffer vain attempts to >> prolong the misery, were I to develop alzheimers. > Even my mother in the latter stages of Alz says let her go. She asked me > the other day where she could sign so she wouldn't be kept here.....June June, Ida signed her DNR (do not resuscitate) early on, and she really meant it. She knew she had something wrong, and kept threatening to kill herself. I am so glad she didn't, because we got to know one another better during that last few years. SignatureBest Regards, Evelyn (to reply to me personally, remove 'sox') It always seemed straightforward when it didn't affect me personally as a nurse. Anyway, my dad has the final decision and my sister and I will support him through whatever decision he makes. Realistically, the ward won't do much. It's one of two ward in a cottage hospital and they have to call an ambulance in an emergency. Stevie Nicks was right when she said "sometimes it's a bitch!" Steve >>> I would definitely agree. Let me go back to the universe, or the void, >>> or whatever one wishes to call it, rather than to suffer vain attempts [quoted text clipped - 10 lines] > I am so glad she didn't, because we got to know one another better during > that last few years. I think my mam's about to die. She got a chest infection and has been admitted to an acute ward. The nurse said the prognosis isn't good > It always seemed straightforward when it didn't affect me personally as a > nurse. Anyway, my dad has the final decision and my sister and I will [quoted text clipped - 18 lines] >> am so glad she didn't, because we got to know one another better during >> that last few years. >I think my mam's about to die. She got a chest infection and has been >admitted to an acute ward. The nurse said the prognosis isn't good Dear Steve, If that is so, I truly hope her passing is peaceful. SignatureBest Regards, Evelyn (to reply to me personally, remove 'sox') I join Evelyn in what she said. Also, I pray for peace for you and all the family. Gwen >>I think my mam's about to die. She got a chest infection and has been >>admitted to an acute ward. The nurse said the prognosis isn't good > > Dear Steve, > > If that is so, I truly hope her passing is peaceful. Oh, Steve, it's never easy, is it? If the end is indeed in sight, I hope it will be an easy and pain-free passing. You and your family are in my prayers. Songbird Hi All The good news is hat my mam pulled through. She was very dehydrated, had a chest infection and UTI and aBM level of 18. She now has pressure sores on her heels. They had her on 100% O2. That obviously perked her up mentally. She was on IV antibiotics and Glucose. When she saw me and David she smiled so much it made me so happy I got upset (again!). I have to say that the quality of nursing care at the general hospital was not good. Even my sister, who is general trained was not pleased. An example would be pressure sore care. She should have been turned every four hours, yet my dad was there over five hours one day and not one nurse came anywhere near my mam. I tried to talk to a manager but there was no ward manager (she left), there was no modern matron (she retired, the staf didn't know who the service manager was and the didn't know how to put me through to PALS! Basically there was noone senior to talk to about our concerns. I will take that up with them now I'm back in London. Dad was so displeased that he discharged my mam after she was physically well enough. The nursing staff in her EMI ward were delighted to see her back. They were hugging and kissing her nad fussing around her so much, (and genuinely) that any concerns I had about my mam being there dissapeared straight away. It has been a week of roller coaster emotions this past seven days, but the upshot is that mam hasn't left us. We agreed that she is DNR and I feel calm about that, and I am sure it won't be long before the roller coaster starts again. But I can go with that. I have my mam for a little bit longer. On another positive note, got my job in Liverpool an we have put an offer on a 200 year old cottage. I'll soon be 2hours awayfrom mam and Dad as opposed to 6. Thanks again, for all your kind words, they have been very uplifting. Best wishes Steve > Oh, Steve, it's never easy, is it? If the end is indeed in sight, I > hope it will be an easy and pain-free passing. You and your family are > in my prayers. > > Songbird Steve, glad you have your mam for a while longer. And hope your bid on the cottage goes through. Being closer will be good for all of you. Gwen > Hi All > The good news is hat my mam pulled through. She was very dehydrated, had a [quoted text clipped - 34 lines] >> >> Songbird |
Reply to this Message |
 Sign In
 Join
 My Latest Posts My Monitored Threads My Blog My Photo Gallery My Profile My Homepage Start New Thread Enable EMail Alerts Rate this Thread
|
©2009 Advenet LLC Privacy Policy - Terms of Use
This website includes both content owned or controlled by Advenet as well as content owned or controlled by third parties.