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Medical Forum / Diseases and Disorders / Alzheimer's / November 2009what to do when
Hi all, it's been a long time since I've posted. Quick background---I live with an 82 year old friend who has AD, I think in maybe the mid- stage. She can't really do the bills, often avoids taking a shower or bath, wears the same clothes several days at a time, eats less, still drives (scary thought), sometimes has sort of ...obsessive thoughts that don't change when evidence to the contrary is made clear, and who is withdrawing more and more and becoming more and more dependent on me. Thing is, I can't be here 24 hours a day to look after her, not 7 days a week. It's too stressful to stay that long, so I have another person here on the weekends, so it's down to five nights a week. It's a help, but I have to say I am very tired. My question is, When do you know when someone needs placement in a home? My friend has not yet done anything outright dangerous here, but the forgetfulness is really scary and seems to be accelerating. The other day I turned on the stove and then had to let the dog out (about ten steps away), and my friend was in a panic worried that she had turned the stove on. I worry about that myself--she had no idea at all if she had done it afew seconds ago or if I had done it. Of course, I told her it was me and it was fine, but still...yikes. She can't manage her money, loses the bills if she gets the mail before I can, and has lost and found more cash and stocks around here than you would imagine. I found 35K worth of savings bonds stuffed into an envelope while cleaning the spare bedroom a month or so ago. She had no recall of ever buying the things, or how they got there or when. They were bought back in the 70s and 80s. Also, my friend is a huge fall risk, with balance problems and impaired use of her right arm due to a break earlier this year and a very low body weight. She is 5 ft, 7 inches tall and maybe 103 pounds. She sometimes sways when she stands and cannot get up off the floor without help. She refuses to wear the litttle lifeline wristband and most of the time, doesn't know what it even is for. What should I look for in regards to needing to be in a home vs staying here? I want to keep her home as long as I can. Thanks in advance. LM >Hi all, it's been a long time since I've posted. Quick background---I >live with an 82 year old friend who has AD, I think in maybe the mid- [quoted text clipped - 31 lines] >for in regards to needing to be in a home vs staying here? I want to >keep her home as long as I can. Thanks in advance. Over-riding factor - do what's best for her. When you can't provide the care she needs (and that point comes for everyone, eventually), you'll have to consider a home where they can hire enough help to provide care 24/7. Of course, her reaction to living in a home is important - but I get a sense from your post that you realise that she's just not safe by herself anymore. Do what's best for her, physically and emotionally. As a side benefit, it'll also be better for you - it won't help her if you stress yourself into the ground. I speak from experience; I let myself get so ground down when caring for my wife at home that I wasn't making good decisions. When she finally moved to a home she settled in easily, instantly forgetting all about home. I think it's decision time for you. She's actually further along than you realize - from your description, she's into early Stage 6. This is going to go downhill fast, and right now is as good as it gets. Believe me, it gets worse. Much worse. She absolutely needs supervision and support 24/7. Don't wait until you have a disaster - you have more than enough indicators that if you allow this to continue, something is going to happen. She will have a car accident. She will leave the stove on and cause a fire. She will get lost. She will get taken advantage of. She will eat something she shouldn't eat, or take medication improperly when no one is around. She will go out of the house half dressed. Safety trumps every other consideration. The current situation is not safe even now, never mind going forward. You have to make some choices - which are to figure out how to keep someone with her 24/7, or, decide this is beyond you and find a facility or other alternative for her. You don't have to like what is happening to her, or I know you won't feel great about either of the unfortunate choices, but it is what it is. It is horrible and no one deserves this. However, she is no longer responsible for herself - she's like a four year old. Either you are going to be responsible for her, which means really taking charge of this situation, or you find another place for her - whether that be living in a small group home situation, with a family member, or in a larger dementia facility. No rose colored glasses, no wishing things could be different. Be brutally honest with yourself about what you can handle. Either figure out how to cover it all, or place her. No angst allowed - because torturing yourself means a decision doesn't get made. You need a decision soon because if you do have to find another living situation for her, that can take a while and there are often long waiting lists for good places. She absolutely should not be driving, and you know that. This is one area where you cannot be squishy on the decision front - it isn't just her that is at risk - it's other people on the road, it's children on the sidewalk. Alzheimer's doesn't just affect short term memory - it impacts depth perception, emotional control, ability to reason, reaction time, judgement - all those things you need in order to drive safely. You know the degree of her impairment. If you can't find the strength to stop her yourself, use whatever else you have available to you - report her to the licensing authority, get her doctor to report her, disable the car, get family members to take the car away, whatever. I know this is painful and miserable, and believe me, I feel for you. We've been through it, and it breaks your heart. M Hi, LM, I've read Mary's post and totally agree with her. It's not easy to place someone into a nursing facility but it sounds like what you need to do. Many of us have realized after we put our loved ones in 24-hour car, it was by far the best decision for them. In time the person does acclimate. smiles, Elise >I think it's decision time for you. She's actually further along than > you realize - from your description, she's into early Stage 6. This is [quoted text clipped - 45 lines] > > M >I think it's decision time for you. She's actually further along than > you realize - from your description, she's into early Stage 6. This is [quoted text clipped - 45 lines] > > M I just wanted to add my endorsement to the truth of what Mary says above. She is right on the money with this. I do hope you take her advice.  SignatureEvelyn "Even as a mother protects with her life her only child, So with a boundless heart let one cherish all living beings." --Sutta Nipata 1.8 Is she taking any medicine? From a person that has been diagnosed with AD about 2 years I know the problems and needs please, make sure that she is seeing a Neurologist and that medicine is being provided, there is no cure but we can retard the advancement. Jim > Hi all, it's been a long time since I've posted. Quick background---I > live with an 82 year old friend who has AD, I think in maybe the mid- [quoted text clipped - 32 lines] > keep her home as long as I can. Thanks in advance. > LM Hi, Jim, How did you find the strength to be checked for AD? Or did yours show up in routine check ups. I'm 52, my mother's side is plagued with Alzheimer's victims. I have wanted to be checked for any signs but the fear is overwhelming... My memory is very poor but I am also an anxiety sufferer with depression. If this is personal, I understand and no need to reply. smiles, Elise > Is she taking any medicine? From a person that has been diagnosed with AD > about 2 years I know the problems and needs please, make sure that she is [quoted text clipped - 39 lines] >> keep her home as long as I can. Thanks in advance. >> LM Elise, it is not easy but you have to make up your mind, I new that my Mother and my aunt died of it, so you must accept the path - there is no certain age to be specific but it happens when it's in your genes. One thing for sure, the more you think about it, the greater the anxiety and that is the worst. Make sure that you go to a Neurologist, I do volunteer work at the local hospital and work with patients that have Alzheimer's and I do understand the fear. May God bless you but make up your mind and go! after a number of special tests your Neurologist will let you know at what stage you are in and he will prescribe special medicine to slow down the advancement of the decease and that is the key, since there is not cure as of today. Jim to incude one aunt > Hi, Jim, > How did you find the strength to be checked for AD? Or did yours show up [quoted text clipped - 49 lines] >>> keep her home as long as I can. Thanks in advance. >>> LM Weeks, you probably realize that familial early onset AD is relatively rare. If this was in your family, you would aware of it - you would look across the family and see a pattern of people going downhill in middle age and dying at a relatively young age. I have a coworker, for example, whose mother went "crazy" in her 40's, was institutionalized and died in her early 50's - from the familiar form of early onset Alzheimer's. He has a number of other relatives who variations on this happened to - this happened to them prior to age 65, many of them in their 40's and 50's, so it is dramatic and unusual. 5-10% of cases of AD are early onset, and less than half of those are the familial form. If your relatives developed their dementia in their senior years (i.e. 65 plus), it is probable they had garden variety AD. Although having family members with late onset AD ups your odds, you should know that a lot of people are not properly diagnosed. It's astonishingly common that the AD label gets slapped on some other cause of dementia. How sure are you that your family members actually had Alzheimers and not dementia from mini-strokes or Parkinson's, or Picks or Lewy Body or the host of others ? There is quite a laundry list of illnesses that can impact cognition. As you know, if you are lucky enough to live to be 85, you have about a 50-50 chance of having some form of dementia - and this is for anyone, including those with no family history of Alzheimer's. I'm the same age as you. We all live with the shadow of debility as we age. All you can do is look after yourself. Instead of wringing your hands over what might be in terms of things you can't control, have a good look at your lifestyle and see what you can control. Are there things your doctor has been on you about....weight, blood pressure, smoking, exercise, diet, stress, sleep, triglycerides, blood sugar etc. etc. ? Stuff happens and genetics are a b&%ch (neither of my parents got to 65), but we can at least take control of the known factors to up our odds of a healthy active old age. M. > Weeks, you probably realize that familial early onset AD is relatively > rare. If this was in your family, you would aware of it - you would [quoted text clipped - 35 lines] > > M. Thanks, all of you. This is a hard thing to deal with and I appreciate everything you've all had to say--I'll be talking with her doctor privately this Friday and I'll keep you all posted on what we can come up with for a better care plan for her. She is getting more and more difficult, and to answer one poster, no she does not always take her pills. This evening she flat out refused. Again. She has forgotten how many pills she does take and she knew that only a short while ago, though she could not recall what they were for. They are for memory and heart/blood pressure. I can't force them into her, I have no idea what to do on nights like this. Thanks again, I really, really am glad this group is here. Louis On Oct 12, 5:22 pm, Mary Gordon <Mary_Gor...@tvo.org> wrote: > Weeks, you probably realize that familial early onset AD is relatively > rare. If this was in your family, you would aware of it - you would [quoted text clipped - 35 lines] > > M. Thanks, all of you. This is a hard thing to deal with and I appreciate everything you've all had to say--I'll be talking with her doctor privately this Friday and I'll keep you all posted on what we can come up with for a better care plan for her. She is getting more and more difficult, and to answer one poster, no she does not always take her pills. This evening she flat out refused. Again. She has forgotten how many pills she does take and she knew that only a short while ago, though she could not recall what they were for. They are for memory and heart/blood pressure. I can't force them into her, I have no idea what to do on nights like this. Thanks again, I really, really am glad this group is here. Louis **************** Hi Louis, My mother in law was difficult about her pills too. When she still lived alone, she would either forget them altogether or else "remember" them too many times in a day, forgetting she'd already taken them, then she overdosed. Then when she lived with us, we had to tell her with each pill what it was for before she would take it. She couldn't remember any of her visits to the doctor, though we both went regularly. We had a regular routine, and she would get her pills after dinner. Even though they can't remember something themselves, if you stick with a regular routine at a regular time, there is some kind of an unconscious memory that sometimes kicks in. I found that same thing with the bathing issue. Over time that I had been helping her with regular baths, she stopped objecting to them. SignatureEvelyn "Even as a mother protects with her life her only child, So with a boundless heart let one cherish all living beings." --Sutta Nipata 1.8 > > Weeks, you probably realize that familial early onset AD is relatively > > rare. If this was in your family, you would aware of it - you would [quoted text clipped - 50 lines] > > - Show quoted text - Hi all, Louis Markham here again, sorry for the lateness of my reply--I had a pc problem and lost the file with all my passwords and well, life's been pretty busy as well. I talked with the doc like i said; he and I had a fairly in depth talk about the changes I've seen. My friend has been bathing less and less, is having more and more trouble remembering anything and is eating less and less. SHe even talks about dying and how she wants to stop feeling as bad as she does. I tell her take your pills, they'll help but as you know, she doesn't always want to. Doc said: Expect more of that and she'll show personality changes as well, becoming less and less like herself.He had good advice as well about her changes and it felt great to be able to seperate the person from the disease and talk with someone who knows her about it all and see him remain detached. I wish I was more like him that way. I hate seeing her change like she has. He doesn't want her driving, so when we can *find* her lost car keys again (I'd rather they were found on m y time than randomly) I'll sneak them away and file them down rather than take them off her keychain.(OMG we would never stop hunting for them then!) We also have got the first contact with her eventual home going; they have a pretty good place we've already been to when we went to visit a friend of hers one day. Her doc also makes housecalls there, so I'm quite in favor of that place on just that alone.I feel safe about eventually her living there, it's got to be ok if he makes housecalls and speaks well of the place and their staff. She has no idea this conversation has taken place, which I feel wicked guilty about. It's a really down day today, too. She has been refusing to eat lately and has been furious with me for what, i have no idea. I talked pretty plainly to her yesterday, stating the thing she does NOT want to hear, that she has Alzheimer's and NEEDS her pills and to eat food. She has been guilting me ever since, saying nobody has ever talked to her so harshly in her life, etc.. I can see she is genuinely hurt; I feel like such a jerk caregiver right now. She says she can't remember what I said, but she recalls how bad she felt and that makes me feel like crap. She used to be ok with the A word, now it is like some kind of swear that really hurts and offends her. She says she wants to die rather than live with so little memory, that I should just leave rather than stay and be upset seeing her like this, etc.. I told her she was like another mum to me and that I would stay with her, but jesus it sure is difficult sometimes watching this happen to her. She also freaks out if I'm gone for any length of time and gets really resentful that I'm away; it's just not like her. She used to be so different and such a vibrant person. I have no idea how to help her, so I just held her while she cried about losing her memory so fast and so badly--I got pretty choked up, too. She's sleeping now with a crashing headache from not eating anything since yesterday morning except the glass of OJ I talked her into this morning. I'll try and get her to eat again sometime this afternoon when she wakes up. We'll see her doc again Nov 24, I'll update a bit then. In the meantime, if anyone has any advice to offer, it'd be great. Today sucks. |
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