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Medical Forum / Diseases and Disorders / Alzheimer's / September 2005Mum Refusing to get up
Hi All The Manager of Mum's ALF phoned me today to tell me that Mum is refusing to get out of bed until after lunch on a regular basis and doesn't want her meal in her room either. She never has breakfast. I know this has happened sometimes but the staff assure me that this is getting more frequent. (I usually visit late afternoon as I know she stays in bed late). It is becoming frustrating for them to keep trying to get her up and she denies that they have as she just doesn't remember. In spite of us having a good talk with her I know she will forget again and refuse to get up tomorrow. They are worried that she is going so long without food and drink and are getting her doctor back and the psychiatric nurse. I'm not sure what to do about this, as there seems little I can do from here apart from telling her that she must eat, any ideas guys? Thanks Barb in UK > Hi All > [quoted text clipped - 16 lines] > I'm not sure what to do about this, as there seems little I can do from > here apart from telling her that she must eat, any ideas guys? Sorry Barb, there's no point in that either, as you mention yourself, since she'll forget immediately :-) or should that be :-( Do they have to *ask* her? can they not just get her up? Or, can they lie and say its now lunchtime so she's got to get up? Has anyone asked her why she doesnt want to get up? If its because she thinks its too early, just lie about the time. Or lie about whatever other fact is keeping her there, if there is one?  SignatureTumbleweed email replies not necessary but to contact use; tumbleweednews at hotmail dot com Its not your problem - its theirs - and they should know better than to try and reason with her OR or try to get you to talk her into it. She has a dementing illness that affects reasoning, emotions, logic, memory, sleep patterns etc. etc. Its like arguing with a 2 year old about an appropriate schedule and expecting to get cooperation. They need to get her up, dress her, feed her, and put her to bed at whatever times fit with the routines of the facility, and the best interests of her health. Sleeping in (or sleeping during the day) is not a great idea for anyone with an illness that causes sleep disturbances. They need to keep her on regular hours, and they need to figure out how to do that without arguing. I'd be just opening the drapes, turning on the lights and some music, and hauling off the bedclothes, up and at 'em! The locked AD ward my MIL on managed to keep everyone moving on a set schedule. Its not rocket science - more like herding goats (no different than being a mom). M. > Its not your problem - its theirs - and they should know better than > to try and reason with her OR or try to get you to talk her into it. [quoted text clipped - 17 lines] > > M. Mary, your answer was excellent and covered another aspect I hadn't considered. It is certainly possible they are just not trying hard enough to get her up in the morning. Ida used to just like to stay in bed waiting till we came to get her up and dressed too. She would eventually allow us to get her up and come out for coffee, but if left alone she might definitely have lain in bed all morning. SignatureBest Regards, Evelyn (to reply to me personally, remove 'sox') > Hi All > [quoted text clipped - 20 lines] > > Barb in UK Dear Barb, It sounds as though she is sort of shutting down mentally. When a person starts shutting down, it may be because of any number of reasons. One might be that there is just so much damage from the AD that there isn't any desire to get up or experience things anymore. The other might be that she is in some pain and doesn't know how to express it anymore. I would ask that she be properly checked out to see if it is something physical, and if they can't uncover anything, I'd let her do as she wishes. If she doesn't want to eat, don't make her. If she doesn't want to get up, don't make her. But first I'd rule out physical pain or illness. We sometimes tend to forget that the illness itself is terminal. Not that your mom is nearing that stage, but you need to find that out. You surely must know from reading here that a "talking to" just doesn't register anymore. They can't remember what you said from one second to the next. At any rate, I hope you are able to determine what the problem is. Best wishes Barb. SignatureBest Regards, Evelyn (to reply to me personally, remove 'sox') > Dear Barb, > [quoted text clipped - 13 lines] > one second to the next. At any rate, I hope you are able to determine > what the problem is. Best wishes Barb. Thanks all of you. Yes, I think they should leave her there, if that's what she wants. I have asked her why she doesn't want to get up and she says there is nothing to get up for and that she is never hungry. They say that they can't physically make her get out of bed as that would be classed as 'abuse' and I do know how awkward and stubborn she can be if someone tries to make her do something she objects to. She says she is in no pain so I will see what the doctor says when she comes. If there is nothing physically wrong, then I agree that her body is just shutting down gradually, in fact that is what I think is happening. I have just phoned the home and they did manage to get her up this morning so I will just have to take it day by day. They said if it continues I will have to find her somewhere else as it is taking up so much of their time trying to rouse her, but she is settled now and I don't want to move her at this stage. Appreciate all your advice, will let you know how I get on. Barb in UK >> Dear Barb, >> [quoted text clipped - 36 lines] > > Barb in UK How about something like 'there is a visitor for you'?...By the time she's up and dressed I'm presuming she will have forgotten that? OTOH I have to say, her reasons sound 'reasonable'! What actually is she getting up for? And if sh isnt doing much, she wont be using much energy either and thus not needing a lot to eat. SignatureTumbleweed email replies not necessary but to contact use; tumbleweednews at hotmail dot com >> I have just phoned the home and they did manage to get her up this >> morning so I will just have to take it day by day. They said if it [quoted text clipped - 12 lines] > getting up for? And if sh isnt doing much, she wont be using much energy > either and thus not needing a lot to eat. Of course, everybody is different, but there came a time when Ida just didn't want to eat, and it was harder and harder to get her to eat anything. That was around the time when her falls began to get more frequent, and just before we placed her in the nursing home. Barb, I am concerned about that place saying they are going to make her move. Is it a nursing home and an assisted living together? Or is it only an assisted living and they have to be placed somewhere else as a matter of course if their illness worsens? Changes are difficult for anyone, and it is a shame if they make them move again. SignatureBest Regards, Evelyn (to reply to me personally, remove 'sox') > They said if it continues I will > have to find her somewhere else as it is taking up so much of their time > trying to rouse her, but she is settled now and I don't want to move her at > this stage. who the hell do they think they are there for, themselves or the patients? tell them that it's OK if she wants to stay in bed, and they shouldn't waste the effort. if they continue this "find somewhere else" idiocy i would file a complaint with the authorities. While I agree, that they should be dealing with the issue and not threatening to make her family look for other accomodations over not getting up.....it IS an institution, and they do have set routines, and are staffed around set schedules. Doubtless they have cleaners who need to be able to get in and make beds, scrub floors, retrieve the linens and laundry at a particular time of day, morning staff whose main job is getting everyone cleaned up, dressed and ready for the day, they have a kitchen that operates on a schedule (breakfast served from 8-9 or whatever), staff whose duties are to assist with feeding at particular hours of the day, and activities planned at specific times to exercise and entertain the residents. Even the diet is carefully calibrated around so many means and snacks per day. Breakfast IS important - just ask any teacher who faces a classroom full of kids who haven't eaten before coming to school. It isn't realistic to expect them to accomodate one person's desire to stay in bed when it not only interferes with the flow of the institution, but the person who wishes to stay in bed has a dementing illness. She may be depressed, she may be ill, she certainly can't be expected to be reasoned with. Either the depression or illness needs to be dealt with, and beyond that.... I its neither, it really isn't healthy for her to stay in bed and not eat - not for her physical health, or her mental health. If she's in bed, she's not interacting socially, she's not eating and drinking, she's not getting exercise or mental stimulation - and sleeping away the day can mean she's more awake at other times, such as the evening and night time. She has to be integrated into the rhythms of the facility, just as someone living in your house needs to. I would think if there were charges of neglect, they would come from an inspector or other families finding a resident in bed at lunch time, unfed, unwashed, undressed, doing nothing. If this were a home care situation, the caregiver could accomodate this to a greater extent (that is, if they really feel like having the person set the household schedule, no matter how inconvenient it is to put off the laundry, shopping, cooking, cleaning, bathing or whatever until the person is willing....which in the case of a person with dementia may be never). As far as the shutting down thing - I may be wrong, but I don't get the sense that she is quite at that stage in the illness where neurological damage means endless drowsing. The very fact she can talk still and give rational answers about how she feels tells me she's not that far gone in the illness. I really think she may be depressed (i.e. feels she has nothing to look forward to), and that needs to be dealt with - but I AM totally gobsmacked that the staff can't deal with it. As I mentioned, my MIL lived for two years in a locked AD ward, and then two years in the heavy care nursing floor, and despite the wide variety of personalities and degrees of impairment, the staff managed to get everyone up and moving unless they were actively sick in bed. Mary G. I agree with Mary....Perhaps it's time to consider a facility that is set up to deal with the more severe problems of dementia. I also realize that health care can be dealt with differently in different countries. I found this out when I was corresponding by e-mail with a lady in Switzerland that had a son with a similar birth defect that my grandson had. She was almost frantic to find doctors that would take her son's breathing problems more seriously. Here my grandson was treated quickly and monitored closely. Not the same problem but perhaps the same attitude? > While I agree, that they should be dealing with the issue and not > threatening to make her family look for other accomodations over not [quoted text clipped - 51 lines] > > Mary G. > but I AM totally > gobsmacked that the staff can't deal with it. As I mentioned, my MIL > lived for two years in a locked AD ward, and then two years in the > heavy care nursing floor, and despite the wide variety of personalities > and degrees of impairment, the staff managed to get everyone up and > moving unless they were actively sick in bed. This whole story reminds me of a resident I had when I was the Alzheimer's unit director in an Alzheimer's assisted living facility. Millie was probably in stage 4, liked to socialize, and had plenty of friends on the unit. But this woman just would *not* get out of bed. We truly exhausted our "bag of tricks" and - 9 times out of 10 - they didn't work. On the rare days she *had* to get out of bed (ie., for a dr's appointment) I would literally have to assign my best staff member to her room all morning long ... and then *maybe* she'd be ready by the time her daughter came. Fortunately for us, her daughter was very understanding and knew that we were truly doing all we could. Obviously, Millie is an extreme case, but the OP's mother might be in the same boat. However, I do think it's odd that they are trying to recommend that the OP's mother be moved to a different facility. We learned to accomade Millie's schedule whenever possible. If the current facility is not willing to do this, then maybe the OP *should* start looking around to find a suitable dementia care facility. MaryD Director, NJ Alzheimer's Adult Day Care Certified Dementia Practitioner >MaryD >Director, NJ Alzheimer's Adult Day Care >Certified Dementia Practitioner Mary, thanks for your contribution. Not being a U.S. resident, I'm not sure what it entails to be a C.D.P. What sort of skills are required? Is the position/role primarily about caring or treatment? I'd appreciate any further information you are able to provide. -- 2 + 2 = 5 for sufficiently large values of 2. >>MaryD >>Director, NJ Alzheimer's Adult Day Care [quoted text clipped - 6 lines] > of skills are required? Is the position/role primarily about caring or > treatment? I'd appreciate any further information you are able to provide. Hi Anthony, Being a Certified Dementia Practitioner is primarily about caring. To be certified, one must have 3-4 years hands on experience working with dementia, be a college graduate licensed in their field of study, and complete an intensive training course. I've been working with Alzheimer's/Dementia for about ten years now - first as a private in-home caregiver, then as a recreation aide, music therapist, Alzheimer's Unit Director, and now as the director of an Alzheimer's specific adult day care. As a certified dementia practitioner, I've also been doing regular in-services and staff training for ther past few years. MaryD > While I agree, that they should be dealing with the issue and not > threatening to make her family look for other accomodations over not [quoted text clipped - 51 lines] > > Mary G. Hi Everyone Mum got up again today just before lunch. They set her alarm clock and then managed to get her up just before lunch. She remembers nothing at all of the conversation we had with her the other day, I knew she wouldn't. I asked her if she wants to be woken up for lunch or if she would rather just stay in bed and she said she does want to get up for lunch and thought she always did... I also spoke to the Manager of the home and she assures me that she doesn't want Mum to leave but was just trying to explain that she has procedures that have to be followed. Mmm. I am going to write to the doctor this weekend and express my concerns and ask that her medication is reviewed. Mum is definitely getting worse by the day and is adamant that she isn't getting her sherry every night, even though the bottle is still there in the morning (they measure out her 1/2 pint so that she doesn't feel deprived). There is no longer any point in trying to reason with her which I will point out to the doctor in my letter so I will see how it continues. I don't want to move her because as some of you may remember, she said she wanted to move last year and I got her all sorted out in a super place and then she refused to go. I wish she had, as it was a far superior place in my opinion but the last thing I want to do is upset her when she is settled. I will just have to see what the doctor says, thanks so much for your replies, they are much appreciated. Barb in UK > There is no longer any point in trying to reason with her which I will > point out to the doctor in my letter so I will see how it continues. I [quoted text clipped - 3 lines] > my opinion but the last thing I want to do is upset her when she is > settled. Barb, maybe you should reconsider, if that place is still available, if you moved her , she wouldnt recall after a few days anyway (or maybe hours or even minutes if she's like my dad?) SignatureTumbleweed email replies not necessary but to contact use; tumbleweednews at hotmail dot com Barb.....my mom was a huge sherry fan (Harvey's Bristol Cream), and I share her love of it as a treat from time to time. Sherry is a fortified wine as you know, and the alcohol content is generally between 16 and 20% (the Harvey's I love is 18%). A traditional sherry glass holds 3 to 3 1/2 ounces. You are telling me your mother is drinking 1/2 pint - which is 8 ounces nightly??? In other words, about what the rest of us would think of as three "normal" servings of sherry (and the alcohol equivalent of having 3 half pint glasses of beer). I hate to say it, but in an elderly person, where drugs like alcohol take much longer to process out of the body (the liver is much slower and less efficient in dealing with it), that much daily alcohol in one go alone might be a major part of the problem of why she can't get up in the morning (by adversely impacting the quality of her sleep as well as not totally being worn off by daytime so leaving her sedated). That seems like a LOT of alcohol for someone frail, elderly and demented to consume on a nightly basis, and a quantity that could be interacting with other medications in a negative way. You might want to scale back the wee tipple to one small glass nightly. If I had three drinks of sherry (in my corny but beloved St. Paul's Cathedral sherry glass) nightly, I'd have trouble getting up for work on time, and I'm a hale and hearty 48 year old. Mary G. al My MIL was adamant that she would NOT move from the town she had lived in her whole life... So we waited until she had reached a point of virtually no recall and showed up with a new set of luggage that was on sale at Penny's and told her we were packing her for her vacation. "Remember the vacation we're taking together?" At that point, she was so easily confused, it wasn't that difficult although my hubby and I arranged everything with the airline before hand and I had him stand outside the restroom anytime the two of us went in. We brought her to her new AL place just for Alzheimer's people and flew back to pack her room. It's been 3 years now and she still thinks she's on vacation. And she settled in very quickly. If she's at the point where her recall is that bad, would she realize after 3 or 4 days that she had moved? Also, I wouldn't approach it as a move, it's a "visit" or a "vacation" or whatever works. If they understand dementia, she'll be much happier there in the long run because they won't expect her to behave like someone without dementia. Yes, she may kick up a fuss for a few days, but then she will settle in. IMO, at the stage you describe, you have to make the decisions for them that you know will best because they are no longer capable. Like a child, they may throw a tantrum, but you can't let that swing the decision you know is best for them in the long run. Karen > Hi Everyone ----snip---- > There is no longer any point in trying to reason with her which I will point > out to the doctor in my letter so I will see how it continues. I don't want [quoted text clipped - 7 lines] > > Barb in UK > My MIL was adamant that she would NOT move from the town she had lived in > her whole life... So we waited until she had reached a point of virtually [quoted text clipped - 25 lines] > > Karen Hi all, thanks for the replies. Yes, the alcohol is too much, I totally agree, but it was a whole litre before it was cut down and the doctor cut it down to this and said it would cause her too much upset to make it any less. She always remembers her sherry, both she and my father had an alcohol problem. There is no room at the place I was moving her to, and actually most of the elderly people there are not suffering AD and as she is getting worse I don't know if it would be suitable now. Pity I didn't stick with it and just move her when the place was available. Take care all and thanks for the input. Barb in UK > Hi All > > The Manager of Mum's ALF phoned me today to tell me that Mum is refusing to > get out of bed until after lunch on a regular basis and doesn't want her > meal in her room either. She never has breakfast. Our situation is somewhat different in that my MIL still lives with us. She never gets up before noon and would sleep all day if you'd let her. As long as she sleeps at night instead of staying up all night, it's ok with me if she sleeps late. Shortly after noon each day I tell her it's time to get up. She says she doesn't feel good and is going to just sleep in today - she says this everyday. After several attempts to get her going and after making sure she isn't ill, I will finally tell her "there is no rest for the wicked, and you've been very, very bad. We need you to get up and do the dishes and clean the sinks". These are actually her favorite activities these days, since she can still do them fairly well. After this, she will slowly get out of bed, get dressed and stay out of bed for about 2 hrs or so. One question that immediately comes to my mind is: Is she taking any drugs that could cause this behavior? My mother-in-law is living in an Alzheimer's assisted living facility. The doctor there put her on an anti-psychotic drug to reduce her "agitation". It did that in spades. She slept all the time. When you talked to her, her ability to pay attention and respond went way down. The doctor assured us that the drug dosage was the absolute minimum amount, and that it wouldn't cause this behavior. But we insisted that they take her off the drug. Within about two weeks her sleepiness was gone and she was back to her pre-drug state. I would ask to see the names and dosages of any drugs she's getting and look them up to see if drowziness is a possible side effect. This is a common problem. Even the better assisted living facilities often drug the patients for reasons that have more to do with convenience for the staff than benefit to the patient. Alan I work at an AL that specializes in dementia. I also have residents who like to sleep in late and do not come to breakfast. Bottom line for us is, they have the "right" to sleep as late as they wish. We can cajole them, joke with them about what they are missing, and do our darndest to get them moving, but if they refuse to get up, there is nothing we can do. Forcing someone to get up to accomodate Caregivers is simply not an option. I hope things change for her, but in the meantime, I would look for a dementia care AL. All staff is trained in dementia care, and we do have little tricks that work to "encourage" someone to get up out of bed and get moving. All the best, Patty > Hi All > [quoted text clipped - 20 lines] > > Barb in UK >Forcing someone to get up to accomodate Caregivers is simply not an option. Thank you for saying that! While I greatly respect the time and effort provided by many caregivers, I do believe that caring is about the patient rather than the interest of the caregiver when it comes to dignity and exercising that part of being human that is still functional. Having said that, I recognise that a carer might be liable for allowing, say, the patient to cross a busy road alone. What I've said above suggests we might benefit from a definition, of sorts, about what the responsibility a carer has from a legal point of view? Any takers? -- 2 + 2 = 5 for sufficiently large values of 2. I know from a friend with 2 family members in Alzheimer's care that if a person develops bed sores or rashes because they aren't being moved or aren't being bathed on a regular basis, it's a liability issue. Knowing all the conversation that has been on this NG about how balky people get about bathing, I can see a conflict on that issue. My MIL detests showers and prefers baths, but for someone with incontinence and physical coordination issues, a tub bath is just not a wise choice. I've seen some of the others objecting most loudly to baths, but rashes are not uncommon for someone with incontinence and can get out of control quickly without bathing. I have been told by the caregivers at my MIL's place that after a certain point, it becomes a challenge to get enough calories in the residents to prevent weight loss. So, I would imagine if someone starts losing weight because they aren't eating but one meal a day that would also be a liability issue. Karen ----snip---- > Having said that, I recognise that a carer might be liable for allowing, say, > the patient to cross a busy road alone. [quoted text clipped - 6 lines] > -- > 2 + 2 = 5 for sufficiently large values of 2. Karen <kk5151@hotmail.com> is alleged to have said: > I know from a friend with 2 family members in Alzheimer's care that if a > person develops bed sores or rashes because they aren't being moved or [quoted text clipped - 5 lines] > objecting most loudly to baths, but rashes are not uncommon for someone with > incontinence and can get out of control quickly without bathing. It sounds like these bathing problems are universal with Alzheimer's and possibly other dementias. There are bathtubs with doors that open so people can step in and out. There are lifts that could lift her in and out of a regular tub. Given that this disease gradually immobilizes people, some such device belongs in all but the smallest home-based care facility. > I have been told by the caregivers at my MIL's place that after a certain > point, it becomes a challenge to get enough calories in the residents to > prevent weight loss. So, I would imagine if someone starts losing weight > because they aren't eating but one meal a day that would also be a liability > issue. These people are dying of a fatal brain disease. How long do we insist they keep their weight up? It seems kinder to let them dwindle away than to force them to live until the last, bitter minute. But these decisions need to be made by the family and doctor based on the quality of the patient's life, not by lawyers. I know the lawyers hold sway, but as long as the state laws are followed and all the paperwork done in advance, I don't think the facility is on the spot. Even when a bunch of howling "religious" fanatics descended on Terri Schaivo's hospice to make sure her body stayed alive long after her brain had died, no one attacked the facility. Caveat: someone said during this circus that 30 judges had ruled in this case, all in favor of the husband, who wanted to remove his wife's feeding tube. So even if one of those legal actions was against the hospice, they were not held liable. SignatureJo Ann Malina, make spamthis best to find my address It is the duty of a doctor to prolong life and it is not his duty to prolong the act of dying. -- Thomas, Lord Horder They have the tub with door arrangement where my MIL is, but I agree with the caregivers that it's not sanitary to give a tub bath to someone with bowel incontinence. I have felt the spray on their shower though and it's a really gentle spray. About what I'd want to use on 1-2 inch seedling plants. She doesn't seem to mind the shower spray, but she always seems to think she just took a bath and doesn't need another one. She has been having a problem with a recurring rash, but I think it may be from the adult diapers. The caregivers clean her up as needed and apply the cream the doc prescribed but the rash seems to be where the elastic is (fold of the leg) and nowhere else. I can't see doing without the elastic and she really needs the diapers at this stage. The doctor said this is a problem for some of the patients he sees. The only thing we've come up with as a possible improvement is getting her in cotton dresses instead of polyester slacks. I'll find out next week if it helped or not. Karen > It sounds like these bathing problems are universal with Alzheimer's > and possibly other dementias. [quoted text clipped - 3 lines] > that this disease gradually immobilizes people, some such device > belongs in all but the smallest home-based care facility. However, Anthony, when a person has a dementing illness and no longer has the ability to assess what they want to do for safety, social appropriateness, or in the context of their own healthy, the ball game changes. You allow the person choices, but only within certain contexts (i.e. after actions have been screened for safety and other concerns). I'm the mother of three kids - now 14, 11 and 7, and they CONSTANTLY want to do things that are dangerous, socially inappropriate, or bad for their health, and I have to say no. Its not an affront to their dignity. Its a reflection of me being the one with the functioning mature intellect who can assess the consequences of what they want to do. When I was assisting my husband in caregiving for my late mother in law, we also had to say no a lot. A lot of the time, we said no to preserve her dignity, not to take it away - for example, when her preference would have been to never bath or changer her clothing or when she would have left the house with her bra on top of her blouse and no skirt. We also said no to her to preserve her safety and her health, such as taking the option to drive away, or making sure she took her pills or ate nutritious food. If she had been mentally intact, sure - no problem, eat twinkies all day - it wouldn't be our business to tell a functioning adult what to do. But when she lost the capacity to make rational decisions for herself, or foresee consequences, appreciate dangers etc. - whole other ball of wax, unfortunately. M Interesting question and "it depends". Mom made detailed written documents stating what she does and does not want when her sister got this, and that gives me a legal leg to stand on if we are at a hospital and someone wants to do something. I have a friend whose Mother had no medical power of attorney or directive to physicians and her doctors forced the children to allow many things that she probably would not have wanted. If I let Mom wander in the street I would surely be in trouble for elder abuse. Or if I just decided to stop fixing food for her. If she stops eating on her own, we don't have to let anyone interfere with that in any way. I don't have to take her to the hospital, unless she breaks a bone or something. I don't have to wonder what she might want if she were still here, I can read what she wants in the file cabinet. SignatureLesanne > >>Forcing someone to get up to accomodate Caregivers is simply not an [quoted text clipped - 21 lines] > -- > 2 + 2 = 5 for sufficiently large values of 2. >Interesting question and "it depends". Mom made detailed written documents >stating what she does and does not want when her sister got this, and that [quoted text clipped - 9 lines] >a bone or something. I don't have to wonder what she might want if she were >still here, I can read what she wants in the file cabinet. All I can say is you're the sort of caretaker (is that the same as a carer?) I'd like to have :-) -- 2 + 2 = 5 for sufficiently large values of 2. And I can say as well that I would find you delightful, from reading your posts. SignatureLesanne "Anthony Shipley" <astech@iinet.net.au> wrote in message news: > > All I can say is you're the sort of caretaker (is that the same as a [quoted text clipped - 3 lines] > -- > 2 + 2 = 5 for sufficiently large values of 2. >And I can say as well that I would find you delightful, from reading your >posts. Ooh, you wanna be careful with such judgements. I might be funny but delightful....? Not if you're my carer, sigh! -- 2 + 2 = 5 for sufficiently large values of 2. Funny is delightful. Funny is what keeps me going most days. SignatureLesanne > >>And I can say as well that I would find you delightful, from reading your [quoted text clipped - 4 lines] > -- > 2 + 2 = 5 for sufficiently large values of 2. And oh yeah. When she wants to stay in bed, we let her. SignatureLesanne > >>Forcing someone to get up to accomodate Caregivers is simply not an [quoted text clipped - 21 lines] > -- > 2 + 2 = 5 for sufficiently large values of 2. >And oh yeah. When she wants to stay in bed, we let her. When do I move in? :-p -- 2 + 2 = 5 for sufficiently large values of 2. It is a rather long way to come I am afraid. And not nearly as nice as where you are. We are in Brownsville, Texas, on the border of Texas and Mexico, and about 10 miles as the crow flies from the Gulf of Mexico. SignatureLesanne > >>And oh yeah. When she wants to stay in bed, we let her. [quoted text clipped - 5 lines] > -- > 2 + 2 = 5 for sufficiently large values of 2. There is more than the inconvenience to the hired caretakers & the rythmn of life in the facility to allow one to remain in bed. Bloodclots which we know can cause strokes---not to mention bedsores. I believe most reports from the nursing homes or AL places are told to the responsible people so that they are kept aware of how their LO is doing, It's called cya. > And oh yeah. When she wants to stay in bed, we let her. Hi Lesanne, We were inclined to do that too, but like everything else in life, it had ramifications. If we let her lay in bed all day, then she'd be awake and maybe into mischief at night when we needed to sleep. (This statement came from experience, I want you to know). We had to install a kid-proof special lock high up on the front door when she was trying to go out into the forest at 2 am. So being asleep all day and awake all night was NOT a good thing. So we urged her to get up and get dressed and have a bit of breakfast every day, and if she was genuinely sleepy and wanted to snooze all day after that, we let her. But keeping some semblance of "normal" rhythms was necessary. If you recall that babies often do that too, lose track of day and night rhythm, and it is better to amuse them and keep them awake in the day so they would let you sleep at night, you have some idea of the reasoning behind it. SignatureBest Regards, Evelyn (to reply to me personally, remove 'sox') Mom being Mom has her own set of habits and such. She rarely stays in bed, day or night, for very long. She also tends to be very quiet when others are sleeping. Being an R.N. I used every advantage I had to learn to modify our environment, including soliciting what people did in their cases here. Mostly what I got here was a lot of negative vibes about how I would have to place her, but it is because people just don't get that when you Have a nurse, and a home, you already have a nursing home :). The home is modified to where she cannot get outside without assistance. We have fire exits, but she cannot work them. My room is set sort of to the side of her area, and there is a black mat in front of my door that she refuses to cross (what a shame). My full time help has a room between Mom's and mine. She rarely wakes the help, mostly she will just go sit here or there about the house, and then wander back into her area when she wants to go back to bed. There are activities she likes in the daytime, and most days she gets up for them. She still has a good appetite and can almost always be called out for coffee. If she spends a great deal of time in bed, we have a special mattress on there so it does help with skin issues, and we reposition her a lot if it is daytime. Her skin is not showing any signs whatever of breakdown. We have her regular hairdresser wash her hair weekly. You would have to actually work in a nursing home to realize how skin breakdown happens, they are careful to conceal the fact that many residents spend the entire night wet, or some degree of wet. That does not happen here. She does do something nutty at night once in a while, but we are set to clean up pretty much whatever. The worst thing that has happened was she drank part of a glass of water mixed with dish soap and got the runs. The dish soap now stays under child proof lock.... SignatureLesanne >> And oh yeah. When she wants to stay in bed, we let her. > [quoted text clipped - 19 lines] > they would let you sleep at night, you have some idea of the reasoning > behind it. I want to add, regarding respect. My Mom is a person. Sure her mind is not all here, but her wishes are here, in writing. I do not feel any inclination to treat her like a child, or cajole her into doing anything she doesn't wish to do. Bathing, is just something I go ahead and do, but only when it is needed, and as quickly and with the least possible fuss. I am offended by the attitude that her dementia makes it necessary to Make her eat, or force her to get up if she does not want to. I can see the point of people being upset if their sleep is disturbed, but that is not happening here, and I imagine that there will be some intervention for that if it does happen. SignatureLesanne I don't think anyone was suggesting that its appropriate for the caregiver to exert arbitrary power over the person just to be a controlling so and so. However, we do have to recognize that the person wants to do can't be permitted for a variety of reasons - and caregiver stress and ability to cope IS a valid reason. If, for example, the caregiver has a household to run and other people to consider, they may not be able to accomodate major distruptions to the daytime schedule, OR the potential that the person may be up very late at night. M I agree with this. If the caregiver has other people in the home to consider then they need to make the decisions that work for them. At the same time, I don't believe that it is necessary to give people advice about what they should do in their own particular situation just because they ask what You do in yours while gathering info. A person can say "we do this and that" or "we had to go to assisted living because it did not work for us at home" without saying "YOU need to consider doing this or that...." get my point? SignatureLesanne >I don't think anyone was suggesting that its appropriate for the > caregiver to exert arbitrary power over the person just to be a [quoted text clipped - 8 lines] > > M >I agree with this. If the caregiver has other people in the home to >consider then they need to make the decisions that work for them. [quoted text clipped - 5 lines] > did not work for us at home" without saying "YOU need to consider doing > this or that...." get my point? I agree, Lesanne, that what works for one person may not work in another situation. However, IMHO, most things in life have an inherent risk -- and one of posting to newsgroups is receiving opinions you may not appreciate. Advice is part of the territory. Because we have all had intensely emotional experiences with our LOs, we need to be prepared for responses that are emotional or intense (or both.) You take what resonates with you, you consider that which you might otherwise reject, and you come up with what works for you. Once you have been here for a while, you also get to know the personalities, and you can predict how certain people will respond. There is a diversity of viewpoints and that is part of the value of the group. If you think someone is being hard on you, the least you can do is appreciate the fact that they care enough about you to post a reply. If your concern is with the niceties and semantics of the response rather than the hard-won wisdom in it, you are letting the wrapping paper you don't like get in the way of the gift. And I am a professional writer -- so believe me, semantics mean a lot to me. Here, I'd rather have the hard truth, even if I don't want to hear it. Songbird > I agree, Lesanne, that what works for one person may not work in another > situation. However, IMHO, most things in life have an inherent risk -- and [quoted text clipped - 17 lines] > > Songbird I totally agree, Songbird. I've been on this group long enough now to appreciate the different approaches and pick through them all for advice which really has helped over the years. Sometimes we can't see the wood for the trees and that can be really depressing. I thank everyone for replying to my posts, imagine if they didn't! Barb in UK Lesanne- You do seem to have all your bases covered. Having full time help is wonderful. Many of us are not that fortunate. I just wonder if Mum does not wake anyone most nights how can you be certain she is always OK. Is the black doormat ,which (I suspect) gives the feeling of a different elevation, working in other parts of the home. Do you use baby monitors.? A surveillance camera? I would hope you would be able to impart some little things which would be helpful to other caretakers. As for the wording used in response to a postings well all I can say is ;-) if it does not apply, pass it by. C'est la vie. I would like to add---Friday I signed as responsible party ,for my husband to enter as a resident into an AL facility..It was not an easy thing to do. I tried it first as respite 4 months He seems so much happier there than stuck with me,mostly cooped up all day & night. I think just being able to wonder around the facility has made him feel freer. Incidently his walking seems surer. I believe I had to OK this move with myself--It was my intention never to do this..what a selfish way to think.! Enough! Sorry to go on so--- Florence I don't know about in your area but as a nurse who has worked in nursing homes briefly here, I am fully aware that most residents of nursing homes and AL facilities spend much of the night alone. I cannot be certain that she is always OK, day or night. The one time she has fallen in the past few years I was about a yard from her and could not catch her in time. The house is modified so that she cannot turn on anything that gets hot, or get ahold of anything sharp, and the area she walks in is clear of hazards such as end tables, rugs, etc. There are little things sitting out to distract her and keep her entertained at night, and little lights in various places that stay on. Washcloths to fold, big cards to sort, things like that. There is also a plastic glass of water here and there, and big picture books. She is certainly as safe as she would be in a nursing home, because one of us would wake right away if she fell, the house is not that big. I lock the rooms that are unsafe such as my office. Being a 57 year old nurse, I get up a couple of times a night to go to the bathroom. Each time I check on her, and if she is wet or out of pocket and wants to go back to bed I take care of it. The help gets to sleep unless I call her. I get to nap if I need to during the day. On weekends when the helper goes home my daughter comes to help. I suspect that the nursing home or AL facility might cost as much or more than our full time help. We live right on the border, and good household help is easy to find. Honest, hard working, caring people who really need the work. As an R.N. I was able to train the woman who works here now, and she is excellent and loving to Mom. The black doormat is supposedly seen as a hole in the ground. Of course I am not in her head, but it did stop her from coming in and petting my face at night :). Our house has four bedrooms, the one Mom is in is at the end of the hall. She has to walk past mine, and the helps on the way to the living room where part of her things are. There is also a big fish tank that she has a chair in front of. Many times I will find her there gazing at the fish at night. Past that room is the dining room, and we have the kitchen gated off with a rather high gate that she cannot open. There are two bathrooms, one in her room and the other off my room that both have night lights and sometimes she will still use one. We are careful to offer her a healthy diet, and her doctor thinks that plus the activities, exercise and general stress free environment have kept her on her feet for all this time, and still eating. She is also partly continent. At night she usually will go in the adult underwear, but so far always goes to the bathroom for her BM. Usually she takes the underwear off at that point and can be counted on to go on the furniture after that but we found some really neat covers for that, if I don't wake and put some on her. Also because of my years as a nurse I can put myself back to sleep in most any conditions. I don't lose much sleep if I get awakened. The house is small and quiet enough that a baby monitor is unnecessary. I can hear her anywhere she can get to if I am awake. I don't mind the advice most of the time I get here, it is just a little frustrating. It's just people. I have overcome a really massive weight problem and some people still try and tell me how I should eat, or about some great diet. I just wanted people to know how it sounds I guess, when they pop off with totally unnecessary and rather useless in the circumstances advice. And Florence, there is a body of nursing research that says that your decision will not really be easier for you, other than the joy you feel for him. We have other demented ladies who come here during the day sort of like an adult day care, but for an hour or two for crafts and other things. Mom would truly not benefit from a move. And I sleep better knowing she has a good nurse :). Every Individual Situation Is What It Is. I would not ever tell you to make the decision you did, even if I lived in the house with you for a month first. But I am fairly certain from lurking here that you absolutely made the right decision. And darned if you didn't do it all on your own without me telling you that you had to. :). SignatureLesanne > Lesanne- > You do seem to have all your bases covered. Having full time help is [quoted text clipped - 20 lines] > Sorry to go on so--- > Florence Lesanne, I agree with you regarding unwanted or unhelpful advice. I was just beginning to participate in this group, but after one post, I received quite a bit of judgmental, gloom and doom advice, full of assumptions that did not not take into account my family's specific circumstances, even though I included such details in my post. It was a turn off and generally unhelpful. It sounds like your mother is getting exceptional care and it's very clear you have done extentsive research. > I don't know about in your area but as a nurse who has worked in nursing > homes briefly here, I am fully aware that most residents of nursing homes [quoted text clipped - 91 lines] > > Sorry to go on so--- > > Florence Lesanne, I agree with you regarding unwanted or unhelpful advice. I was just beginning to participate in this group, but after one post, I received quite a bit of judgmental, gloom and doom advice, full of assumptions that did not not take into account my family's specific circumstances, even though I included such details in my post. It was a turn off and generally unhelpful. It sounds like your mother is getting exceptional care and it's very clear you have done extentsive research. > I don't know about in your area but as a nurse who has worked in nursing > homes briefly here, I am fully aware that most residents of nursing homes [quoted text clipped - 91 lines] > > Sorry to go on so--- > > Florence > Lesanne, > [quoted text clipped - 7 lines] > It sounds like your mother is getting exceptional care and it's very > clear you have done extentsive research. Dear Meg, It is often how it is on usenet, you know.....But one is always free to ignore advice which doesn't fit your circumstances or your own assessment of the situation. I have never had any qualms about doing so over all the time I have posted here. There were plenty of times I got advice that I quite rightfully didn't take, and plenty of times when it ended up that I should have listened, and didn't too. It's your call, right or wrong. I do, however, absolutely try to recognize the spirit in which advice is given. If it is meant well by a generally kind person, I accept their goodwill, even if I don't agree with the advice. If it is from a mean spirited, insulting or overly critical individual (and I assure you we have definitely had a couple of those) I use my killfile. I think it is a shame to deny oneself this potentially excellent resource because of occasional advice that doesn't fit, or the odd meanie here and there. For the most part the posters here are good hearted people who mean well. I think this group is a far kinder and more sympatico bunch than any other newsgroup I have frequented. You might find as I did, that it is a lot harder in a real in-person support group than it is on usenet. We had a very nice lady in ours who just monopolized every meeting with endless stories that just didn't really relate to the entire group. The group director had to use a lot of skill in asking the right questions of the other group members so they all had their chance to participate. On usenet, one can just skip over a bore, or someone whose advice doesn't jive with your own conclusions. At any rate, I hope I wasn't the one who gave you bad advice, but if it was, I am sorry anyway :-) SignatureBest Regards, Evelyn (to reply to me personally, remove 'sox') Evelyn you tend to me one of the most tactful :). I usually read all your posts, unless they are bottom posted so far down that I get tired of scrolling. How is that for honest... ? And some folk cannot stand us top posters. And I even chopped the rest off this one, but you were hoping that you did not give unwanted advice to meg. SignatureLesanne Hi Lesanne, I have to confess that to most of us old time usenet posters, top posting is considered sort of rude, as though one were disregarding the comments before, but I have no idea where that idea came from, or if it is really true. I am top posting this one just for you with a half a chuckle :-) And I honestly still do hope I wasn't the one that got Meg's goat, though another old time usenet belief (useful or not) is that one shouldn't have a goat to be gotten in the first place (on usenet that is). The reason for this is that when you post in a public place, you have got to expect that there are going to be some irritating elements, and you just take it from whence it comes...... At least that is the theory, anyway. SignatureBest Regards, Evelyn (to reply to me personally, remove 'sox') > Evelyn you tend to me one of the most tactful :). I usually read all your > posts, unless they are bottom posted so far down that I get tired of > scrolling. How is that for honest... ? And some folk cannot stand us top > posters. And I even chopped the rest off this one, but you were hoping > that you did not give unwanted advice to meg. Yeah, I don't have much of a goat, but I do have some strong opinions of my own. :) Thanks for the top post. I tend to recall what people said in the threads that are interesting to me, and I am way ADHD, so scrolling is ... never mind :). SignatureLesanne > Hi Lesanne, > [quoted text clipped - 14 lines] >> posters. And I even chopped the rest off this one, but you were hoping >> that you did not give unwanted advice to meg. Evelyn Ruut <mama-lionsox@hvc.rr.com> is alleged to have said: > Hi Lesanne, > > I have to confess that to most of us old time usenet posters, top posting is > considered sort of rude, as though one were disregarding the comments > before, but I have no idea where that idea came from, or if it is really > true. I am top posting this one just for you with a half a chuckle :-) Most but not all. I've been on usenet for 10-12 years, and I don't see what all the fuss is about. It does get a bit confusing when people mix top and bottom (and interleaved) posting, and don't cut down the previous posts. A blind man on another list once let us know that top posting is easier on those who have software that reads their computer text aloud to them -- you don't have to wait until it plows through another copy of the post you just read (sometimes to get to the informative line "Me, too."). Just something else to consider. On the original topic, I agree with Lesanne, Evelyn, that you are one of the more tactful posters on this group. People who can't ignore bad advice shouldn't be asking questions on usenet. Anyway, really bad stuff will usually be contradicted and corrected by other long-term posters. SignatureJo Ann Malina, make spamthis best to find my address To recommend thrift to the poor is both grotesque and insulting. It is like advising a man who is starving to eat less. -- Oscar Wilde Top posting is easier, IMO, for the reader to read through. Like email format, the prior message is below if you need to refer to it. Interspersing can be hard to unravel and find the comments sometimes. But some people defend bottom posting, top posting or any variation in between with the fervor of a jihadist. When you're 6 years old, this is known as the "I'm right and you're wrong" philosophy. I had someone slamming top post a few days ago by saying it contradicted "millions of years of evolution." :-) One of the things I like about this NG is that communication is considered the main point. Evelyn, I admire the tact with which you respond to some of the zingers I've seen. I'm still giggling over the gold coins of a few days ago. :-) Karen > Most but not all. I've been on usenet for 10-12 years, and I don't see > what all the fuss is about. It does get a bit confusing when people [quoted text clipped - 12 lines] > stuff will usually be contradicted and corrected by other long-term > posters. Gee We're getting a lot of mileage out this string!!! BTW I appreciate all the input I get because I've felt I am alone in my concerns for my mother. I realize there's no one size fits all solution. Sometimes it may take a view I hadn't thought of to help me see the light. The obnoxious ones just go to the killfile........June > Top posting is easier, IMO, for the reader to read through. Like email > format, the prior message is below if you need to refer to it. [quoted text clipped - 9 lines] > I've > seen. I'm still giggling over the gold coins of a few days ago. :-) > Gee We're getting a lot of mileage out this string!!! BTW I appreciate > all the input I get because I've felt I am alone in my concerns for my > mother. I realize there's no one size fits all solution. Sometimes it > may take a view I hadn't thought of to help me see the light. > The obnoxious ones just go to the killfile........June Yep, that is the way, June. Only way to do usenet! SignatureBest Regards, Evelyn (to reply to me personally, remove 'sox') I use and like top posting. You don't have to re-read the other post unless you need to be reminded of what it was about. Gwen > Evelyn Ruut <mama-lionsox@hvc.rr.com> is alleged to have said: > > Hi Lesanne, [quoted text clipped - 20 lines] > stuff will usually be contradicted and corrected by other long-term > posters. I suspect it's similar to the people that learned DOS and hated windows or learned Word Perfect and can't stand Word. I know one person that seems incapable of saying the word Microsoft, she _must_ say Micros**t because she's still mad over how they programmed Word. After awhile, you just want to say "Sheesh! Move on already!" (or at least I do, I suspect Evelyn would have more patience). Karen > I use and like top posting. You don't have to re-read the other post unless > you need to be reminded of what it was about. > Gwen Thanks for your comments. Most people just say ignore those posts, but it occurred to me that if people can post things like that, it is also fine for me to post my opinion of it :). SignatureLesanne > Lesanne, > [quoted text clipped - 7 lines] > It sounds like your mother is getting exceptional care and it's very > clear you have done extentsive research. Florence, thank you for sharing this with us. I found the actual writing of the letter that would result in the revocation of my husband's driving license was just heartbreaking. Dropping it through the mail slot left me with a great sadness even though I knew it had to be done. Tomorrow I begin looking at facilities in the area for possible future placement. I'm not sure how long I can keep this up and at that point I'm sure he will get better care, more freedom and much more socialization than a tired 24/7 caregiver can provide. Ruth > I would like to add---Friday I signed as responsible party ,for my > husband to enter as a resident into an AL facility..It was not an easy [quoted text clipped - 7 lines] > Sorry to go on so--- > Florence Ruth---- I know that feeling of disloyalty & sadness when you have to" tell on " you spouse. The craziest part - they are the very things you would have discussed with him. Now you must make the decisions. I thanked each of my children. individually, for not pushing me in any direction. It was not easy. The long ( 3 1/2 months) respite in the AL facility helped a great deal. Respite seemed less drastic I guess. I felt I could change my mind. I didn't have to think about moving furniture bedding etc.The room was a companion room Just brought Don's clothes & a TV. which he never watches But he seems happiier.. Didn't know there was/were double rooms.(they are less expensive too) So far one man occupied the other bed for about 10 days... I was able to realize a smaller place was better. If you have been to any Alz groups they usually talk about different facilities. If you have any questions you think I can help answer, ask away. Florence >Ruth---- >I know that feeling of disloyalty & sadness when you have to" tell on " >you spouse. The craziest part - they are the very things you would >have discussed with him. Now you must make the decisions. >I thanked each of my children. individually, for not pushing me in any >direction. Heh-heh! My wife's problems are my repetitive saying the same things again and again and doing things, I should not do, again and again. Whenever she comes back from the shops, I check her bags for the handcuffs :-) -- 2 + 2 = 5 for sufficiently large values of 2. Anthony---be happy...she comes back, guess it's called luv....Keep your sense of fun..it helps. |
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