Dear all, I have been helped so much by all the questions and answers on this board but now, for the first time, I am moved to ask you all for help. To start with I must tell you that my daughter and I are the carer's (Stuart's) carer's and, apart from a nurse that calls three times a week to change the bandages on two decubitus ulcers the only support he has or, indeed, seems to want. There is a sister who visits very occasionally and who really doesn't want to know what is going on. Stuart is a 47 year old man who has never been married or, as far as I can see had a girlfriend, and who left work about four years ago to look after his 91 year old father who is in the final stages of Alzheimer's. His father was taken into hospital with a UTI about five months ago and, at the same time, he developed double incontinence and lost the ability to walk. While there he also acquired the first decubitus ulcer which is on his heel. He was sent home into Stuart's care after three weeks and the nurse calling to dress the ulcer twice a week. The progress since then has all been downhill. Stuart gets him up every day and into a chair but he has been sleeping 98% of the time and, often, Stuart has had difficulty in waking him .He leans forward so far that his head is on his knee as if he is trying, though in a chair, to get into the fetal position. He rubs his head on his knee or, if he gets the chance, on Stuart's hand or his shoulder. Also, when he's awake, he scratches his head constantly. His vocabulary has been reduced to "Yeb" for yes and occasionally repeating something Stuart has said. Sometimes this is slurred but, at other times, it is possible to understand what he is saying. At one point he stopped eating and drinking but Stuart persisted and he is, to some extent, doing both now. Stuart insists on eating his own meal with him but, left to it, his father gets food absolutely everywhere and often the implement stays in his mouth as well so Stuart just has to intervene and feed him. Even then it is doubtful how much he gets. A week or two ago Stuart got a cold which he passed on to his father who ended up with a dreadful cough. He still has this cough which always seems to get worse when he's drinking water. I'm nearly certain he is loosing his ability to swallow but Stuart won't admit it. The fecial incontinance has become constant diarrhoea and although he wears incontinance pants they just don't hold it and Stuart has a constant battle with laundry. He had a telephone consultation with the doctor about this and the doctor said for his father's age and condition it was acceptable. About two months ago his father also acquired another decubitus ulcer this time on his hip. At this point the nurse ordered an air bed for him and started coming in three times a week. By the way the decubitus ulcer on his heel had, in the meantime, become infected with a constant green discharge and most of his heel has been cut away, the skin and more having died. The nurse doesn't bother with this any more leaving Stuart to wash it and change the dressing. As for the one on his father's hip ..... well, at first, it discharged like the one on his heel but then, it just stopped. It can be seen clearly that there is puss in the bottom of it but it just won't come out even though the nurse has started using very strong silver dressings which she pushes right down into the ulcer with a long implement. It's as if it's dead. In fact, my daughter and I honestly thought that he must be very near to death especially as he also felt very, very cold. Then, out of the blue, about two weeks ago, he woke up! Everything else is still going on but he stopped sleeping .... even at night. He calls of Stuart every minute of the day and night and he talks all the time ..... it's all nonsense and mostly repeating whatever he's heard Stuart say but talk he does. The only other difference is that sometimes he is very hot, even the tips of his ears scarlet, then he will be as cold as ever. Perhaps his temperature control has gone. The outcome, though, is that Stuart isn't getting any sleep and, quite frankly he is obviously in a terrible state ... even being nasty with us and not really wanting to bother with us anyway. Although it is obviously not the case he swears he's "fine" and doing what he wants to do. We have tried so hard but he refuses to have any help with his father at all. I suppose I wonder how long this is likely to go on. How long can someone go on in this sort of state? Is it likely to be long? And what should we do? We try so hard to persuade Stuart to get help but he just won't. It's really getting so frightening! Thank you so much for listening to all this and if anyone can offer advice believe me it will be so appreciated. Please help if you can.
God bless you all,
I am probably not the right person to be writing you back. But, the ones more experienced in the disease that is that far along, will answer you with better help.
I personally think that he is ready for hospice. You need to call them and they can come to his home and help yall immensely. Somestimes you just have to butt in (that is like the pot calling the kettle black). My MIL died of colon/rectal cancer and we had hospice in, just about every day of the week. Just not all day long. Your friend will just make himself ill and land in the hospital, if he does not accept any help at this point. I know, because I almost had wrecks, driving while sleeping. I am catching up this weekend and Monday before I go back to help with my parents.
You need to go over your friends head and do some calling to the dr. and the hospice and to a social worker. We were lucky in that my dads dr. called in and set up home health workers (nurse, 1 x wk, and pt 2 x wk, and ot, 2 x week), to come to my parents house without asking them. It is a big step towards getting my mom to let someone come 3 x week, for 1/2 day each. That will save the caregiver.
Good luck with your problems, and please make sure the patient is getting pain meds and infection meds. Sometimes you have to have pain patches, at the end of a dying illness.
Hi Wannabe, Thank you so much for taking the time to reply. It means such a lot to know there's someone out there who understands! I know you're right and that we should go over Stuart's head to the doctor etc. He will never ever tell them himself that anything is wrong. The trouble is all he's had for the 47 years of his life has been his mother and father. He worked for me until 1998 and during that time he always went home in the middle of the day to see to them. His mother rang him every day at work and he always went home to them at night. He even went on holiday with them. He doesn't know anything else and I'm sure he's frightened of life without his father. His mother died suddenly from a heart attack six years ago but his life didn't really change. He went on exactly the same way. He won't acknowledge that his father is so near to death ... it's always sometime in the future. I think he believes that allowing help into his life proves that things will have changed for all time. It's all very difficult!! Anyway there has been a change. His father is sleeping most of the time again and he didn't want to eat any of his meals today. Stuart kept putting food in his mouth and he chewed for the longest time but then he spit it all out. Also the nurse came yesterday and she was obviously very concerned indeed about the decubitus ulcer on his hip. She said there was too much seepage and it smells like nothing on earth. The seepage is black and the inside of the ulcer is also black but I understand that internal gangrene isn't black so I suppose it must be the dressing with the silver on it that is causing the color?? Anyway, she said that she was going to take a swab the next time she comes. I'm sure I've read that's no good because it only shows up all the different skin bacteria but I suppose she know what she's doing??? One other thing that concerns me is that when he came home from hospital, five months ago, it was complete with long term catheter and it's only been changed once since then. That can't be right and it must leave him open to infection. Sometimes I feel so helpless!! Most of the world just has no idea what a dreadful way this is to die.
Hope very much that everything is going well with you and that you are taking care of yourself. Once again thank you so much for stopping off. We will do everything we can to help Stuart.
Hi there! Thank you Martha and thank you Wannabe for letting me know there's someone out there who understands that there is a problem! It annoys me such a lot that so many times I've been told that Alzheimer's is a wonderful, gentle way to die because it withdraws the dying from all the things that mean the most to them before they die. How can anyone think that?? Anyway the sleeping all the time and not eating lasted for twenty four hours and then he bounced back and is now talking ALL the time again, day and night. He is SO loud and demanding, constantly telling Stuart what to do. He didn't like the way his room was arranged, or so he said, and Stuart spent yesterday afternoon rearranging it and then when he took him to bed last night his father didn't like it and he moved everything yet again this time to his father's instructions. It is now the room from your nightmares with the end of the bed against the wall where the head should be, a poster down almost down on the floor etc. etc. When Stuart finally got to bed his father called him constantly and when he got there told him to go to bed. Eventually he stopped getting up to him but was still kept awake by his calling and is exhausted today. His father seems to think he's some sort of servant although he said this morning "I know you?", sort of puzzled. Of course on top of this Stuart still has to deal with the outfall from the constant incontinence, cooking, housework etc. There have been no results from the swab on the decubitus ulcer on his hip and, in fact, the nurse, although she had previously said she would come in every other day, has now said she won't be coming until Saturday and has told Stuart to change the dressing on the one on his father's hip as well as the one on his heel so thats more for him to do and his father fights it all the way. The funny thing is that they've also stopped writing up the notes that they make when they've visited in the book that is left with Stuart. In fact, about a week ago, the nurse took a page out of the book telling Stuart she was taking it and that's been that. Certainly the medics seem entirely disinterested whatever his father is like. Perhaps because of his age, I don't know. But what is this constant shouting and belligerence from his father??? I mean he's done nothing but sleep for the past five months, hardly eaten anything and he certainly has said very little. Nothing but yeb for yes and repeating the odd the thing Stuart's said. He was always a fairly quiet person anyway. What is going on in his head?? Oh yes, he keeps seeing a white cat and a white dog. Always white things. "Old men and old women setting fire to a Christmas tree." Does anyone know why this should happen when there seemed little doubt he was about to die?? Also he still has all the other symptoms. Sorry this has been so long again and thank you for reading it. If no one replies I guess it helps to write it all down. My head his spinning so what does Stuart feel like?
God bless and give you all strength,
Hi Val, those behaviours are "normal" in some AD patients, although they usually seem to occur at an earlier stage than what you have described. They are certainly all things that I have seen with my SIL. And how does Stuart feel? All I know is I felt I had somehow found a fast-track to hell, without having done anything to deserve it!!!
I notice you are in Scotland and had a look on the AD Scotland site - there are lots of services Stuart is entitled to - since he is not asking I think the best thing you can do to help is to ask for him.
Services such as respite care for the father will give Stuart a much-needed break, and daily visits from carers to help with the continence issues and/or stay with the father. From what I read the way to access these is through his GP. I did the same in our case - write everything down from both the father's and Stuart's wellbeing perspectives and get it to his GP. The GP will then activate an assessment and social services should come up with a plan to meet both their needs.
You are a very kind and caring person for realising that something must be done, and that Stuart doesn't seem to be able, for whatever reason, to help himself.
Val, I am a little bit worried about my previous reply. Mainly because, the more I think about it, the more I ask why hasn't his doctor already implemented these services? Has Stuart rejected them, or has the doctor not offered them?
I have an uncle who never left home, and my SIL with AD also never left home, so I think I understand a little that Stuart may have some major insecurities about any kind of change in his life. That includes letting other people in to help. I have also dealt with primary caregivers who become so irrational (due to lack of sleep and stress) that they cannot accept "help". And I have been a primary caregiver who "knew best".
I guess what I am saying is, if the doctor is the problem you will find that out pretty quickly if there is no response to a letter (and putting it down in writing is much more powerful than a discussion). If Stuart's resistance is a problem, letting the doctor know that will be very valuable. The nurses and caregivers I have dealt with are on the whole very understanding of a situation like this and can work with Stuart in a way that does not threaten his security and dignity.
The AD society in Scotland looks well setup to provide some of the support that Stuart needs. (I say looks because where we are they were of very little help) If anything will fly with him, there are caregivers support groups that may be a good outlet/resource for him, and a helpline which you could use to develop a strategy to help in this situation.
Either way, I think the situation is very volatile - Stuart is at major risk of harming his own health and may be in a state where he is unable to help himself or his father. It seems to be a common thread for children with AD parents that they suffer so much guilt over not being able to make things right.
Georgie, Thank you so much for both your replies which you have so obviously written with much thought and care. It is greatly appreciated. Where to start? The doctor is not good. When Stuart called him to his father when he had the UTI six months ago he didn't even go in the room, just looked 'round the door and said "Oh yes, we'd better get him into hospital, see what's what." He hasn't set eyes on him since and when Stuart called and asked him to come and see his father about the diarrhoea he just telephoned him and said it was acceptable although he did offer a stool test and that's being done now. However, Stuart and his father were assessed when his father left hospital about five months ago. They were given lots of equipment, a hospital bed on which the mattress was upgraded to an air mattress when his father developed the decubitus ulcer on his hip. A hoist, which Stuart has never used, preferring to lift his father, who admittedly has lost an enormous amount of weight and is very fragile, and a wheelchair which is unused because it won't go through the doors in their house. A commode which is on wheels and which he uses as a wheelchair and it has only been very rarely used for it's purpose. He is on his second one of these as the first one cracked. Also a bath lift which has been used once, Stuart preferring to give his father a bed bath because he flops over all the time. They also built a ramp to the front door so that Stuart could get him outside in the wheelchair that won't go through the door!! At the same time the nurse told Stuart he would never get his father outside again, let alone into the car. There is also a constant supply of disposable gloves to help him deal with the incontinence and he also gets disposable underpants for his father. He had a choice of those or pads for the bed and he chose the former because he gets him up and into a chair every day. The amount of bed linen he has to wash every single day he could honestly have done with the pads as well. Anyway they didn't seem to stint with equipment!! I don't really feel that the nurse dashing in, and she is always in a rush, supposedly every other day from next Saturday is anywhere near enough help. And look how she's left Stuart to do the dressings himself this week because they're short staffed. He dressed both the decubitus ulcers this morning. He's used to doing the heel and, believe me it's not easy, his father's legs are like pistons trying to push him away, but the hip really scared him. He has always held him still while the nurse dressed it and because it is so deep there is a need to pack it pushing the dressing right down into it. I don't know how she dare leave him to it ... and waiting for the result of the swab. Anyway they're done and Stuart's voice sounded as if he was shaking inside. I have told him .... and told him ... to get respite care, including again this morning, and to come to us to be looked after for a while. He just says "We're fine! We're fine! We're doing wonderfully well!" He really isn't the same person he was even a few weeks ago. It's as if there's a brick wall between him and the rest of the world. I know we have to do something but it does scare me that if we bring other people into this he will think of us as some sort of traitors and withdraw from us as well ... leaving him no one. Phew!! I've been thinking about his father and I agree you wouldn't expect him to be behaving the way he is at this stage. By the way he thinks because his father is talking so much and is so bossy that he is vastly improved. I just can't believe that. All the other symptoms are still there, including the constantly running eyes and nose which I haven't mentioned before EXCEPT for months now he has been extremely cold to the touch and suddenly he is hot. Stuart says he has the thermostat on the central heating down to a degree and one over that and his father is pink all over. I wonder if what is happening to his father is delirium caused by a fever cause by an infection? There seems to be potential infection everywhere. The same catheter for months, a constant and very nasty cough but especially when he drinks, his decubitus ulcers. We really do have to sort this out. I just don't understand why the nurse hasn't picked up on any of it. Or, perhaps she has, as I say they've suddenly stopped making entries in the book and up to now there's been one after every visit. To tell you the truth the whole thing is beginning to feel quite surreal. Once again all my thanks for bothering. It really means a lot.
Val, I can't get the image of poor Stuart and his father out of my mind.
I think I understand your caution (not wanting to alienate Stuart through efforts to help). But really, thinking back on our situation, the ONLY things that have made a difference were where I wrote a letter to the doc, and (on a separate occasion) my dh went berserk at the doc for not doing his job.
After both those incidents we got a much more appropriate response to SIL's needs. If you did something like this, I don't think Stuart would know. If he did know, I don't think he would blame you. After all, it is only (if at all) going to result in more help for his father.
I don't know if you can talk to him about this, but if you can, he is entitled to much more help than he is getting. There are incontinence advisors (way overdue) and much much more. The fact that they were assessed six months ago means nothing if the situation has now changed. They need to do another assessment.
Our system seems a little similar to yours - no problem putting in a new shower head for someone who can't climb into the shower in the first place, no problem putting in a wheelchair ramp for someone who can't use one - but no help for people who are really suffering on an emotional and psychological level.
I'm afraid that my daughter and I are no longer in Stuart or, indeed, his father's life. We have tried very gently to persuade him to ask for help but this was obviously a mistake and we should have gone over his head as you suggested. We have been told in no uncertain terms that he doesn't want to see or speak to us again. He seems to see our suggestions as some sort of reflection on his life and we are trying to belittle it. It's all very hard to understand but I do know that we are out!! It's all been very emotional and we are both shattered. His last words were "Leave me alone. I don't need it." so we shall. Thank you for everything. You have been so kind. Please take very good care of yourself.
Doesn't it seem obvious that Stuart himself has some mental health problems? In his case, his being the only caregiver for his father sounds to me like a classic case of 'the blind leading the blind" (and both of them fell into the ditch!) I think they NEED outside intervention, whether they admit it or not. I would call the proper authorities. Lose a friendship, but maybe save a life, or two ...
Thank you so much! I can't even begin to tell you what your words mean to us. We had already decided that something just has to be done and we are getting in touch with the nurses and the doctor who is supposed to be looking after them. I believe that one of the nurses has some idea that Stuart is not quite stable so perhaps it would be best to approach her first. Anyway the time for skirting 'round it all has certainly gone and we shall not give in until the problem has been addressed. The whole thing is getting worse by the day. Stuart just HAS to keep to the same silly routine that they've always had and when the day before yesterday his father didn't wake up in time for his meal, which, incidently he doesn't want and Stuart won't even attempt to give him the sort of food that he might be able to swallow and digest, he actually shook him and shouted at him as well as repeatedly lifting him out of his chair. There's other stuff as well but I won't bore you! So here goes .... wish us luck and say a little prayer for us that we can get some help for them both.
Oh Val, this must all be very upsetting, and you are wonderful to keep on trying.
Whether or not Stuart had any kind of problem before this started, he certainly must be a prime candidate now - I would be half out of my brain under the circumstances.
Good luck talking to the nurse. I have to say I don't like the sound of the doctor much and I would certainly get a list of the problems, in writing, to the doctor - that may be the only thing that makes him a bit more accountable. If you also mention that discretion would be appreciated I'm sure they can handle that aspect of it so as not to make anything worse.
This ghastly disease can create some truly impossible/tragic situations, and sometimes, for all I've tried to help, it seems like I may as well have gone out into the garden and banged my head against the brick wall. You feel you have to try, but the odds are pretty highly stacked. I think you need to give yourself and your daughter a lot of credit.
The overall situation is the priority, and outside intervention is the only solution. As far as your relationship goes, maybe you could let some time pass, then pop around with a Christmas treat of some sort to see if he has cooled his jets? I only say this because from what you have said, you must be very important in Stuart's life - he may come to appreciate/realise that after a couple of weeks.
I discovered that the nurses office operates on an answer phone, you can't talk to them unless they decide to telephone you. Anyway, like you, I am a big believer in writing things down. You can martial your thoughts and say everything you want to do without interruption! So that is what I have done. I wrote to the nurse that I considered would be most sympathetic to our cause and I faxed her a copy yesterday morning. I also posted her a hard copy by special delivery yesterday and she should have that this morning. Faxes can be iffy and, in any case, I thought the special delivery would show we meant business. I've also decided to send a copy to the doctor along with a covering letter telling we think it's time he did his duty by these two patients. The letter is quite long, 3 and 1/2 A4 sheets, typed. I only showed it to one person before it was sent and they said it was very powerful. I do hope so. I can't begin to imagine if they will act on it or if I'll ever know if they have. I suspect their rules on patient confidentiality will stop them from contacting me, Stuart has no other friends or family that I can contact and I think it most unlikely that he will tell me himself. I know, without doubt that he is very good at holding a grudge. I told you that Stuart used to work for me and at the same time there was another gentleman, about the same age as Ian. He eventually moved away to become a paramedic but when he was home occasionally went to see Stuart. However, the last time he went to see him, at least a couple of years ago, he was so disturbed by what he heard and saw that he gave Stuart something of a lecture about him changing things and getting himself a life etc. Ian took exception to this and is still positively venomous towards him and hasn't spoken to him since. We shall try again, as you suggest, before Christmas but I don't think there's much hope for us!! I have asked the nurse to be discreet about the letter but I've also told her that Stuart's health and the situation are of paramount importance and if he has to be told so be it. Anyway, that's it I suspect. I shall try and think of anything else we could do and if you have any ideas they would be very much appreciated. Now that I have been away from the situation for a few days and having thought about it all deeply and logically for the letter I realise more than ever just how bad it is. Stuart is not doing well.
Thank you so much for all your help and ideas. It's hard to explain how much it's meant. Both my daughter and I felt very alone with it all. Please take care and look after yourself.
Bravo Val!!! I truly think this is the only thing - and the best thing - you can do to help Stuart and his father.
Getting a copy of the letter to the doctor will ensure that you have created a paper-trail. There is now a record that the doctor has been notified how dire the situation is and he should "jump" if for no other reason than to cover his you-know-what. Trying to figure out the heirarchy of the agencies providing these services to find the "go-to" person is pretty difficult, so your two-pronged approach will be the most effective I think.
I hope someone will get in touch with you to let you know what happens. If not the doctor, there should be a case worker or social worker in there somewhere whose job it is to liaise with Stuart's support network.
I think Stuart's reactions to people trying to help are even more proof that he cannot see the wood for the trees, and, given that, that there is no other way to help than the course you have taken.