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Medical Forum / Diseases and Disorders / Alzheimer's / May 2004Need Practical Suggestions - Help!
Folks, I haven't had a chance to even read the posts recently, let alone really participate. I'm sorry if this subject has been recently discussed, but I need some practical help. My mother is getting very weak (has lost a lot of weight, no appetite or interest in eating) and her motor coordination is deteriorating further. Yesterday she fell after getting out of bed in the morning, and today, her legs just really don't seem to be working. Yet she insists she can walk. The biggest problem is not so much that she can't walk, but that she keeps on trying to do so. We are looking for a humane way to ensure that she can't try to get up and move around unless someone is there to watch her and catch her if she falls. My sister suggested a wheel chair with a seat belt (my mother is mentally incapable of figuring out how to undo, at this point). That sounds like a good idea. Has anyone else had this problem, and if so, how did you solve it? Thanks for any help you can give, Jennie > Folks, > [quoted text clipped - 20 lines] > > Jennie Jennie we are dealing with the EXACT same situation with my mother in law. I just got another phone call from the nursing home that she got out of her wheel chair and fell again. (fortunately she wasn't hurt) They are going to have the physical therapy people re-evaluate her again and they may use what they call a "lap-buddy" which is a sort of a foam bar across the front of the wheelchair so she doesn't fall again. She is on a toileting schedule, which means that they take her to the bathroom every two hours, which should minimize the problem of her trying to get up and go on her own. They have several ways they deal with it there. One of them is to have an alarm on the wheelchair that goes off if the person tries to get up, and the other is that lap buddy foam bar that I mentioned. They also have a walker that has a seat in it called a "merry-walker". We have tried everything with my mother in law and I think the only thing that would prevent her from falling would be the lap-buddy. Since you seem to be caring for your mom at home, a way of harnessing her in may be OK to try. They have a law against "restraints" where I am, so they don't do that here.  SignatureRegards, Evelyn (to reply to me personally, remove 'sox") Evelyn and Mike, Thanks for your suggestions. Since I posted this to the group, I have learned a few more things. Here in North Carolina, it is against the law to use restraints in the home. Apparently, nursing homes or other institutions (hospitals) can use them, at least under some circumstances. So, given that my mother is still in her own home, the wheel chair with a seat belt is out. But, the nurse that oversees things for the company that provides the CNAs that care for my Mom in her home had a suggestion: a wheel chair with a food tray on the front. It is not technically a restraint, but Mom would not be able to figure out how to remove the tray. This is sort of like the lap buddy. I don't know if things will be better tomorrow, but at this point, I'm not sure Mom will even be able to get out of bed by herself tomorrow. There's a couple of things going on - she seems to be losing the ability to sit up or move herself around. She's also weak from not eating - now she doesn't even seem to want to drink. Also, she's complaining that her leg hurts. This may have been because of the fall yesterday - she may have pulled a muscle. It's just so hard to know because communication is so limited. It's like trying to diagnose a crying baby that has no fever, no cough, and no obvious injuries or physical conditions like rashes. We are taking her to the doctor tomorrow. How we are going to get her out of bed and into the car remains to be seen. She just seems to be deteriorating unbelievably quickly. And Evelyn, since everyone else was giving you a hard time about your thought of "leaving" the group, I will too! ;) "Cries for help" like mine are exactly why you need to stay with us. Those of us with LOs in the last stages of AD still need advice and the comfort that comes from knowing others are facing the same problems! Glad you are still with us! -Jennie > > Folks, > > [quoted text clipped - 45 lines] > may be OK to try. They have a law against "restraints" where I am, so they > don't do that here. > I don't know if things will be better tomorrow, but at this point, I'm not > sure Mom will even be able to get out of bed by herself tomorrow. There's a > couple of things going on - she seems to be losing the ability to sit up or > move herself around. She's also weak from not eating - now she doesn't even > seem to want to drink. this is *very* normal for someone whose body is in the process of shutting down. you might want to consider calling your local hospice for assistance. they specialize in helping families in situations like this, and help to ensure that your loved one can die with dignity, and help the family to cope. Dennis, We had an appointment with her doctor after I wrote that post. We couldn't take Mom because we couldn't move her, so my sister and I went. We discussed just what you suggested - that it might be time for Hospice. Thanks, - Jennie > > I don't know if things will be better tomorrow, but at this point, I'm not > > sure Mom will even be able to get out of bed by herself tomorrow. There's a [quoted text clipped - 7 lines] > situations like this, and help to ensure that your loved one can > die with dignity, and help the family to cope. If she is very late stages of AD as I believe you have indicated, It may be time to look into hospice. You should be able to get a hospice nurse out to your house on very short notice. The nurse will do the assessment to tell you if it is appropriate. If you do not have a hospital bed with rails, it may be time to rent one. I believe a hospice can provide you with one. I was surprised to learn someone can go onto hospice if they are considered within 6 months of death. You can get involved with hospice much earlier than I ever thought. My father was in a hospice program from September of last year till he passed way this February. Getting involved with hospice is like crossing a bridge you do not want to cross. It is taking an overt step to admit your loved one is nearing the end of this life. My experience with hospice were wonderful. They helped make the last months of my fathers life nicer. - Mike, Friendswood, TX > Dennis, > [quoted text clipped - 20 lines] > > situations like this, and help to ensure that your loved one can > > die with dignity, and help the family to cope. Mike, Your advice is right on target. Today, a home care nurse from a local company visited; she had to administer an injection. While she was there, she asked if we felt that it was time to call Hospice, and I said yes. Her company, which is run out of the hospital and clinic that my mother goes to, will work with Mom's doctor to arrange for Hospice. The home care nurses certainly cost money, but they do take care of a lot of details for you. We also talked about the hospital bed with rails on the side. The nurse's aides that take care of Mom 24/7 also asked about getting this kind of bed, since Mom is now bedridden and could fall out of her regular bed pretty easily. They are delivering the bed tomorrow. I was also surprised to find out that the doctor could prescribe Hospice within 6 months of death. As my mother's doctor said, some folks survive for way longer than the expected 6 months and Hospice attends them for quite a long time. It doesn't bother me to have to call Hospice - it's sad that we've gotten to that point, but we knew it was coming. I just want Mom to be comfortable during her last days, and I know that they can administer pain medication. Although you usually think of pain as occuring more with cancer than Alzheimers, something is causing Mom pain. I'm sorry to hear about your father's recent death. I hope you are at peace with his passing. - Jennie > If she is very late stages of AD as I believe you have indicated, It may be > time to look into hospice. You should be able to get a hospice nurse out to [quoted text clipped - 43 lines] > > > situations like this, and help to ensure that your loved one can > > > die with dignity, and help the family to cope. > I was also surprised to find out that the doctor could prescribe Hospice > within 6 months of death. As my mother's doctor said, some folks survive > for way longer than the expected 6 months and Hospice attends them for quite > a long time. My understanding is that the doctor should feel the end *could* happen within 6 months. But if it takes longer, Hospice is not going to say "Sorrry -- your six months is up." Sometimes the docs are right, sometimes the patients are stronger than you think and live longer -- and sometimes it's a matter of a few days, as it was with a friend of mine. Still, it was a big relief having Hospice's help, although no one could have known he would only last five days after they were called in. My theory: Take all the help you can get from wherever you can get it. Songbird The Hospice that I used with my father had to do a re-evaluation every three months. Since he had an ultimately terminal disease: Alzheimer's and was in the end stages, It was absolutely no problem that he was under hospice care for 6 months or more. The doctor just has to diagnose that the expected death is within 6 month. I hope all goes well. - Mike, Friendswood, TX > > I was also surprised to find out that the doctor could prescribe Hospice > > within 6 months of death. As my mother's doctor said, some folks survive [quoted text clipped - 12 lines] > > Songbird When my father began to fall they first tried an alarm. Even though his room was right by the nurse's station, they could not always get to him before he fell. Next they tried a low bed. The thinking is that he would not have as far to fall. Lastly, after everything else was tried. We had to go to a seat belt in his wheel chair. There was no way to make him remember to ask for help getting up or walking. The chair did not have any foot rests. He could still move around by using his feet to move the wheel chair. That was much easier than moving the wheels with his arms. My name is Frank. I am 54 years old. I kept forgetting things and losing very important Items ; dates and times and things I must do; I forgetting how to spell and so on...I bought a micro cassette tape recorder to remind me what I must do and where I have put Items away...I forget to use the tape recorder...It getting very bad... I'm frightened, very frightened...Just tonight I've lost something very valuable that I needed very much ; a necessity. I can't replace this Item...I also leave very important things behind and lose them...like one time I left my entire photography equipment {Two very expensive digital cameras}, and two cell phones in a restaurant, and never found them...This has been going on for years, but as I get older I can't make the excuse any more that it's just normal to forget small things from time to time...I forget the big things...It scares the hell out of me...I feel like I'm going crazy or something...What I lost tonight was extremely important...I'm sitting here depressed....very dejected. I have to admit it once and for all, I'm getting Alzheimer's, but there's nothing to do...I just needed to tell someone before I did something rash...like go out and drink..and I don't drink...I think I may start up on it... --------------- frank > My name is Frank. I am 54 years old. I kept forgetting things and losing > very important Items ; dates and times and things I must do; I [quoted text clipped - 16 lines] > --------------- > frank Frank it certainly sounds scary, but there is some good news. First of all it may be caused by something TREATABLE. Not all forgetfulness is caused by Alzheimers. You need to get to a doctor that specializes in this sort of thing and get tested and get diagnosed properly. Sometimes it is something as treatable as thyroid! Secondly there are medications that are somewhat helpful. When you are feeling like you are, even a little help can go a long way. You need to get on them and soon. Thirdly you need to find someone who can help you. Do you have a child or a significant other in your life who can help you at this time? Now is the time to sign proper paperwork so that there is someone who can make necessary decisions in case you do have alzheimers. We should ALL have this sort of thing in place anyway. Good Luck to you.... and I hope you continue to return here. SignatureRegards, Evelyn (to reply to me personally, remove 'sox") Jennie, you might want to look seriously at buying her some hip guards. They won't stop her from falling, but they might save her from fractured hip, an often fatal result of falls in the elderly. Here is an article about them http://www.accessibility.com.au/news/health/hip_guard.htm Here is what a typical set look like (there are various brands) http://www.epill.com/hipsw.html Mary Another, less cumbersome product is at http://hipsavers.com/index.html I have no interest in this company, but ordered from them 6 months ago. My MIL is using 24 hours a day at her ALF. They wash just fine. She hasn't had a fall on the floor since she started using them, so I can't judge their effectiveness. But as her MD says, a hip fracture is not a good way to die--especially if it can be prevented. Beth Very interesting. I doubt they would have saved Mom from getting both her hips broken in a fall a few months back because her osteoporosis was so bad, but I'm sure they would help a lot of people. Mom had a self-release seatbelt on her wheelchair until last week, when she released it, tried to get up, and fell. They "re-evaluated" her at the NH and now she has a non-release seatbelt. I guess you have to take one fall before you can get it due to the laws. When Mom could walk and was in the dementia unit there was no way she could be supervised every minute. She would get out of bed every few minutes at night and couldn't get back in she would yell for help, but only after she was up. Staff would get her up and sit with her for a while, but she then would want to go back to bed. Zyprexa got it down to 6-8 times a night. The staff couldn't sit and constantly watch her, and one night she got up, fell and broke both hips. Everyone said she might die from this, but that didn't happen. She appears to be eating less and less, but that had started before the fall. I know there are laws about restraints, but sometimes one has to do what one has to do. The neighbors cared for an Alzheimer sufferer who was variously, husband, father, and great- grandfather to people in this large family. Towards the end they told me that they locked him in his room at night. I'm sure it was illegal, but I really understood what they were going through. joan > Jennie, you might want to look seriously at buying her some hip > guards. They won't stop her from falling, but they might save her from > fractured hip, an often fatal result of falls in the elderly. Thank you for the suggestion, Mary. We aren't sure, but she may have broken something when she fell on Monday morning. She complained of pain in her upper leg/hip area Monday afternoon (at least this is the area of the body she seemed to point to). By Tuesday, she couldn't get out of bed and couldn't stand to be touched on her lower torso, or moved. Since her speech and comprehension are so limited at this point, it's very difficult to determine what the source of pain is, or its characteristics. We went over with the doctor possible causes of pain, and a broken hip was one of them. Unfortunately, at my mother's stage of AD, hip replacement surgery is not an option. - Jennie > Jennie, you might want to look seriously at buying her some hip > guards. They won't stop her from falling, but they might save her from [quoted text clipped - 7 lines] > > Mary Jennie, my MIL broke her hip twice (once on each side). Once in early AD - she didn't actually fall - she was in a department store, she turned and twisted an odd way, and crack. It was an odd break - more of a fine spiral crack, really, and it didn't show on a regular x-ray. They had to do a special tomograph thingy to see it - and that happened a full week after the incident, during which time, she had more and more pain and immobility. It might have healed on its own with enough time, but they decided to install a plate to hold it all together. Here is a picture of the kind of repair she had done both times http://www.merck.com/mrkshared/mmanual_home2/fg/fg062_2.jsp I'm sure they do hip replacements for particular types of breaks, but the vast majority of breaks I've heard of were treated with surgery similar to the above. Replacements are more commonly done for osteoarthritis. Second time she broke a hip, it was much more overt - she was in later AD, but still mobile. She stood up from a chair on a carpeted floor and just went down like a stone, and broke the other hip (which makes you wonder if the hip broke on its own before the fall, or if it broke as a consequence of the fall). Again, they didn't replace the hip, but they installed a plate and pins. She wasn't able to do therapy (she didn't know what it was for, she only knew it hurt, so we couldn't get her to participate in the needed exercises). She'd also lost a lot of muscle from being laid up, and was very wobbly, weak and fearful of being upright, so try as we might, we couldn't get her back walking again, and she spent her last two years in wheel chair. She could stand, but that was pretty much it, but even that was a help. I'm not saying that the surgery wasn't hard on her, but at least everything was stabilized, she could stand - and given that she survived for two more years - ! The thing is, if your mother DOES have a break, if you don't fix it, she will be permanently bedridden, and be susceptible to pneumonia, bedsores, blood clots etc. A fairly sizable chunk of people who break a hip die within a few months. If we had known about hip guards, they wouldn't have saved my MIL from her first break, but might have helped prevent the second break. The permanent end of walking was a huge change - it even meant we could no longer bring her home for holidays. Mary G. |
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