My mother sleeps alot about 20 hours a day, and she started leaning to the right while sitting and standing about three weeks ago. Now her left hand also shakes. She eats very little and only drinks about 8-10 ounces of fluid a day. Is this all part of the dementia—are these normal symptoms?
This doesn't sound like normal dementia symptoms to me. I'd get her to a doctor to have her medications checked and see what can be done.
Please make sure the family knows that hospice's track record shows that many people live longer on hospice care than without it. They also help the family. Many people think hospice is only for the last couple of weeks of life. Then, after using hospice, they say, "I wish we'd called earlier."
Obviously, this will be up to your family, but the more educated everyone is, the easier it will be to make the decisions necessary.
This is what a lot of people don't understand - we are healthy, so we get hungry. When people are dying, their organs start to shut down. Their body doesn't want food. Sometimes, it's even cruel (not generally intentional) to push food at someone in that condition. Hospice can answer these questions very well. They helped both of my parents at the end. When my mom quit eating, it was because her liver and other organs didn't function. Food made her sick.
There are conditions that warrant feeding tubes, but if the doctor says this is not one of them, I'd go with that. I know it's hard to make that mental switch, but a dying body isn't going to want to eat.
Thank you for your information. She does have late stage dementia. The leaning while sitting or standing started about three weeks ago. While she is sitting on the sofa we prop up pillows to try to keep her from leaning. She moves her head back and forth and is awake even with her eyes closed and leaning she will ever once in a while hear something on TV and reply with some off the wall responce, or yell out i love you do you love me? Is these signs that she could be approaching the end of her life? She isn't bed ridden yet, but with alot of help walks from her room to the living where she sits all day and then back to her room at night, it's only 12 feet from her room to the sofa. She can not stand with being held up while she gets her diaper changed. Please help I would really like some answers to my questions. Thanks, Carol
I feel she needs to see her doctor. If she is in late stage dementia, hospice can help you, as well. But she'd still need her doctor to get her approved. Please ask the doctor is this is her medication (which it could be) or if she is nearing a time where she (and you) may need hospice support.
Hi Carol, Thank you for the information. Her doctor did advise us on her last visit that he could approve her for hospice, but I don't think the family is willing to go to that point yet. Thank you, Carol
Please make sure the family knows that hospice's track record shows that many people live longer on hospice care than without it.They also helps the family. Many people think hospice is only for the last couple of weeks of life. Then, after using hospice, they say, "I wish we'd called earlier."
If the doctor approves the hospice. then it could be a good idea. In hospice, they can make sure she does not suffer. Sometimes people can come out of hospice. My father-in-law never got to this point and his doctor only recommended a nursing home for less hospitalization.
You can talk to the hospice people and see what kind of service they can provide. A bad home care goes nowhere. It is time to consider different kind of care.
Hi Carol, I just wanted to touch base with you. Took mom to the doctor today he said she probbly has 6 months or less. She keeps her eyes closed all the time and sleeps about 21 hours in a 24 hours period. Just this week she is starting to hold her fluids in her mouth instead of swallowing, she wants to split it out. However, he said we are doing an excellent job taking care of her at home. He said he doesn't approve feeding tubes, when she gets to that point should we try to push for one or is he correct? Isn't it very painful to stave to death? Look forward to hearing from you. Thank you, Carol
Carol, I am so sorry if I kept sending you the same text. I was replying to several people and it was confusing because of our names being the same. I wasn't sure if I was sending it to you or me. I got the reply to myself in my inbox. LOL. However, I would like your opinion on my last text about what the doctor said. Thank you, Carol
I'm so sorry you must go through this, Carol. But it sounds like you are being given good advice. Blessings to you. I know this is very hard.
Carol, I replied this part in the next answer by me. The last one down there.
Hope it helps.
I agree with getting feedback from your mother's doctor.
In my experience, my mom did lean progressively as her Alzheimer's progressed as did many of the nursing home residents who also had dementia. Also, when she was in the hospital, Mom experienced some seizures, which the doctor believed were caused by the dementia. However, Nancy Mace and Peter Rabins in "The 36-Hour Day" said that most people with dementia do not experience seizures. However, Mace and Rabins said that people with Alzheimer's occasionally develop quick, single jerking movements of their arms, legs or body.
Take care and keep us posted!
Hi Dorian, I just wanted to touch base with you. Took mom to the doctor today he said she probably has 6 months or less. She keeps her eyes closed all the time and sleeps about 21 hours in a 24 hours period. Just this week she is starting to hold her fluids in her mouth instead of swallowing, she wants to split it out. However, he said we are doing an excellent job taking care of her at home. He said he doesn't approve feeding tubes, when she gets to that point should we try to push for one or is he correct? Isn't it very painful to stave to death? Look forward to hearing from you, Carol
I do know how difficult this phase of Alzheimer's is on family members. Although my mom never reached the point that your mother has, our family had come to a unanimous decision not to have a feeding tube inserted. Our decision was based on Mom's wishes that she had stated adamently to each of us when she was still mentally competent. I wrote about our decision in this sharepost.
I'm not sure if a feeding tube would be painful; however, the other consideration is that, in her present state, your mom may not be able to communicate effectively to you or medical personnel if the feeding tube is painful.Therefore, she may be in pain and you'll never know it.
One other consideration about a feeding tube is the quality of life. In other words, does your family feel that it is worth it to have a feeding tube inserted to prolong your mom's life in her current condition? Please know that I'm not being judgmental and I do respect whatever decision your family agrees upon. I just have found that sometimes families decide to have a feeding tube inserted in order to delay their own pain of accepting the inevitable death of a loved one for as long as possible.
One option that I have read about recently is comfort feeding. I've written a sharepost about this topic, which might be useful to your family.
Take care and please let me know if there's anything I can do.
Hi Dorian, I appreciate your input. It's so hard to make decisions when you don't know which one is the right one. Mom has always said keep her alive she doesn't want to die. So, with that said I guess we would have to use the feeding tube, I just don't know if that's the right thing or not. Ugh!
This is great, Dorian. Thanks so much for you input!
If I were in your shoes, I think I'd try the comfort feeding option first with the feeding tube being the last resort. But again, it's your family's decision.
Also, be sure you know all the ramifications in your state if you do decide to go the route of a feeding tube.
Hi Dorian, What do you mean by ramifications for this state? Thanks, Carol
This is what I heard from others when we were considering a feeding tube for mom (which I wrote about in one of the shareposts I mentioned above:
"For instance, several friends who have caregiving knowledge have shared with me that in Texas, once a feeding tube is inserted, medical personnel will not remove it; thus, the tube may extensively prolong a life that is gone except for the nourishment from the feeding tube. "
Hello Carol... my name is Keith and I have been following your thread because my mom is about at the same phase as yours with Dementia. We thought hospice would be a good decision for her and it was the worst decision we as a family have ever made. Though mom can only communicate at a minimum with us... its enough that she is clear she does not want to die. "I am tired but I'm not ready to give up." The program should be matched to her personality as you have known her. My mother took care of her mother who also had dementia at home til the very end... no hospice, just patience and lots of love. She cleaned her daily, fed her through all the stages. This was the greatest example for me... as now I know what to do for mom and what's best. I nearly lost my mom to hospice in November last year... but I could not stomach the hospice mission. It is only to make death more acceptable when the FAMILY wants to give up. I won't go into the details but I will tell you... the day after Thanksgiving I took mom to the emergency. The best decision I ever made! My mother is still alive and as well as she can be. Mom has late term dementia. She can still communicate just enough to see friends and family that visit. She wears diapers that have to be changed... she has lots of meds, she hates her baths... moreso cause she wants to do them herself. She does not like the fact she had to give up so much independence. She is on a feeding tube of mostly glucerna for a bedsore she got early on with dementia. She has painful arthritis throughout most of her body, and she crys a lot. But most important if you ask her if everything is too much...she will reply "I want to get away from all this but I want to live as long as I can." Mom is on home health where she will remain until she is no more or I take my last breath...which ever comes first.
Hi Nina, thank you for your information. She does have late stage dementia. The leaning while sitting or standing started about three weeks ago. While she is sitting on the sofa we prop up pillows to try to keep her from leaning. She moves her head back and forth and is awake even with her eyes closed and leaning she will ever once in a while hear something on TV and reply with some off the wall responce, or yell out i love you do you love me? Is these signs that she could be approaching the end of her life? She isn't bed ridden yet, but with alot of help walks from her room to the living where she sits all day and then back to her room at night, it's only 12 feet from her room to the sofa. She can not stand with being held up while she gets her diaper changed. Please help I would really like some answers to my questions. Thanks, Carol
Carol, we recently in April experienced the "dying" episode with my father-in-law. He was having some urine problem and had stopped eating properly. This had been going on for about 2 months or so until the treatment for the illness was done. He still has moderate late Alzheimer's.
Leaning problem is not necessarily dying - it is a common posture problem. The sick elders don't know how to sit properly or lie down properly. She does need help for her posture - to put her in the right position and etc. Does she use a walker? My FIL can use a walker. Without a walker, he is also like disabled person not being able to walk fast or sit properly. But it is a very slow process. But your Mom may not have Alzheimer's. (Could be other type of dementia.) Maybe she can no longer understand TV but it does not mean end of stage. She may feel very sick and dying and thus tell you she loves you and etc.
We thought my FIL was dying until we sent him to the residential care home where he has recovered from "dying" for 4 months now (with Alzheimer's). Now we cannot really say if he is dying soon because he has recovered his eating habit and etc.
It is too early to say if your Mom is dying or not. Check with the doctor. Send her to the ER and find out what is going on. She may have other illness that needs immediate attention. Eating properly is important - either real food or Ensure with nutrition.
Hope this helps,
Nina, thank you so much for your information. It is just so hard to watch her not knowing what is going on, and watching her get so frail. I know she's 85 and even without the dementia she would probably be frail. She was diagnoised with vascular dementia about 5 years ago. Spring of 2009 she became so aggressive she was climbing fences and fight everybody, she was in 3 hospitals and a rehab so they could get her on medications to calm her down. Now, she just sits all day, it's very difficult even with the wheelchair to get her to her doctors and she has to get bloodwork every month because she's on warfrin. She keeps her eyes closed alot even when she is awake...and like i said she must say literally 50-100 times a day i love you do you love me. She just says it to anybody that will listen and answer her, sometimes she know are names some times she doesn't. We just go with it. Thanks for listening. Carol
Carol, I am sorry that even the medical doctors have hard a hard time. About warfarin, I need to tell you that maybe she needs to stop it. My FIL had taken it for a long time until late 2007 when he was intoxicated by caumadin(wafrain) the blood thinner and he almost died. He was given lots of Vit K through the IV to be revivied. He was almost in coma actually.
He has congestive heart failure so he has medications for his heart.
Caumadin is dangerous. You may need second opinion.
Hi Nina, even though she gets her PT/INR checked every month could she still become intoxicated by the warfrin? The doctor put her on it for lack of blood flow through her legs. Thanks, Carol
My FIL was checked every month and we are not sure why the doctor missed it. He may have ignored the last one before he got very sick. After a long time of taking caumadin, it is always dangerous even if it is checked - it may not happen on the same date he checked.
It is up to her doctor and I cannot judge it for her.
My FIL has leg blood flow problem too but now the home gives him the special medical socks to wear so it does not block the blood flow. It is cheap and you can get it from medicare store. It is the thin white one up to the knee.
Nina, thank you I am definitely going to ask her doctor about the warfrin. Carol
Carol, I was looking on this site for answers to a specific problem with an Alzheimer's patient when I noticed some of your questions and the answers to them. I'm sure that others caring for family members with dementia are a wonderful source of support, but I would not solicit advice about specific medical problems from anyone other than a medical professional. If your mother is on Coumadin she is taking it for a reason, e.g., a heart rhythm problem., heart failure, a clotting problem, etc. Blood levels, INR, are checked monthly to be sure that patients remain within a therapuetic range. Coumadin doses are then adjusted up or down to stay within this range. It is possible that a level could get so high that intervention is needed. This is avoided by regular blood tests. Coumadin does not cause intoxication and is not dangerous when monitored properly. Make sure to address these important questions to your doctor. Do not be anxious about Hospice, at least talk with them. You and your family will be amazed at the physical and emotional relief and support the Hospice team can provide. M.E. RN
Thanks so much for your note. Those of us who are health guides for HealthCentral/Alzheimer's agree wholeheartedly that a physician should be contacted whenever any medication or change of symptoms presents problems.
I also want to applaud you for your endorsement of hospice. Hospice provided wonderful care for both of my parents and I recommend them whenever someone wants to know how to cope with end-of-life issues.
Please join in whenever you have something you'd like to add on any of the issues on the site. We welcome your professional input.