My husband is 65 years old and was diagnosed in 2011. Now in 2017, he is not walking, stop talking, he cried a lot and still had a pretty good appetite. But had become very aggressive and get violent when trying to be changed. He hold his head down like it is heavy. Till two weeks ago he had always been very active and talking and singing. I don’t know what to think. Confused
I have put my mother on hospice twice. And twice she proved she did not need it. On the most recent partnership with hospice, a different one from the state that the first hospice we were with. I found them to be cold, business like, non caring to the point that I fired them. Yes, I know this is a huge anomaly and I have dozens of stories from friends and relatives that only sing praises for Hospice. Unfortunately that was not the case with my experience. And sadly, there are only 2 choices where I live and I apparently had the better of the two. How sad is that? Now my expectations for what I wanted from them may have not been in line with what they do, but I found their flexibility in communicating with me lacking tremendously both in how and logistically. So I feel like I am between a rock and a hard place. My mother is not dying, or shall I say, not in her final weeks or days. That could change on a moment's notice I understand, but at this stage she does not NEED them. However she does qualify interestingly enough. She has been in late stage dementia for over 4 years. Her hunger is still there so she finishes her meals, even if they are pureed. She drinks her fortified shakes. And she speaks, mostly garbled, but still speaks. She is in a wheelchair or in bed. Totally incontinent and starting to contort her legs and fingers. She has a pressure wound on her foot that grew quite large, but we have it under control now. It has been a full year with this wound and we see a specialist every 6 weeks and have it treated every other day with a home health care nurse. Hospice wanted to do away with the specialist visits and did not treat the wound like the home health care nurse did. They instead did a version of that treatment which showed they did not intend to get it better, but maintained that it is what it is and will probably get worse. I did not like that attitude at all. So I just continue to alter between one version of care and the possibility of hospice which would let it get out of control and probably kill her. So this is hard for me. It would be one thing if mom had cancer and I knew it was killing her and she had just a few weeks left. With this food wound, if I called in hospice, it would really be me giving her the death penalty a lot earlier than she would if she had the proper care. The guilt is killing me, but I also do not want her going to the hospital for a fall or broken hip or anything like that because she does not need major medical intervention at the stage of the game. I am rambling now, so I will stop here. Thanks for listening.
A month ago I took my 82 years old mom to my sibling's house and she couldn't get out of bed and couldn't get up from the toilet seat. Slept all day and up all night! Doesn't want to eat and hardly drink any water. It went on for 2-3 weeks but sometimes she can get up on her own without my help. When we went home, she was fine able to go to the bathroom by herself, she eats and drink and slept fine. She even got up on her own in the middle of the night to use the bathroom. My husband said that maybe the changed of scenery triggered her. I'm confused and worried when time comes that she won't remember me. She lives with me and my husband and I'm basically the only siblings that's taking care of her. The rest of my siblings live on other states thousand miles away. No one offers to take care of mom!
My mom was afflicted with this monster of a disease, Alzheimer's. Looking back, it was rather a classic case with all 7 stages very obvious and each lasting various amounts of time. When she no longer able to walk to the bathroom, that's when things went downhill fast. About a week of trying to get her to the bathroom, she more or less just stopped being able to move at all and was in bed all day and night. We would get her up for an hour or two to watch her TV programs but she'd usually nap through them. One day I noticed that the food the caregiver gave her at lunch was still in her mouth a couple of hours later. It wasn't long before she wasn't able to swallow water and within 48 hours she was gone. Without water, the body cannot survive. Her Life Directive stated she did not want intervention so we let her go. It was painful but she died at home, at peace, in her sleep. I can only hope I'm that lucky.
"And while the peg tube feedings can keep a body alive a long time. The question we all face is, would the person really want that, or is is only ourselves who simply don't want to say goodbye." from DointhebestIcan above. So difficult for family members to let go. I think that all Alzeimer's patients, having accepted the inevitability of their diagnosis, should while they still have a sound mind, make an Advanced Directive document, Living Will, or sign a consent form to refuse aggressive life-continuing treatments in the final stages of their disease. A DNR (Do not resuscitate) order is not sufficient.
Gewallac, what things are troubling you about your husband? Is he having more difficulty with his ADLs (bathing, dressing, toileting, eating, transferring)? Does he have behavioural issues? Does he sleep too much, or not enough, or at the wrong time (up all night)? That is what you need to confer with the doctor about.
Thank you all for your honest answers. I am caring for my mother who is suffering with Dementia. The week-end she just refused any food or liquid & was very aggressive. I went into panic mode as I have no nursing experience. I phoned the Doctor, who didn't give me much reassurance but then common sense took over. I have accepted that even if we could get medical help for her it would only be prolonging her suffering. I am feeding her with a syringe with a meal replacement but know that this is more for my sake then that it is going to help her. I bathe her & make her as comfortable as possible but have made peace with the fact that I am losing her. Thanks once again.
At this point, ask to consult with Hospice AND Palliative care before you make any decisions. Both groups can go over pros and cons and have a better understanding and insight into what doctors are recommending (they will always err on keeping patient going as thats their training). They will also reconcile what your brother's wishes are (if known) with remaining merciful care.
At my mothers age and condition; once this happens, I will consult Hospice and Palliative care first before I make decisions. I've watched too many people suffer for weeks and then call in Hospice or palliative care once its too late.
My mom has early onset AZ and lost her speech in stage 4 or 5 and has been in stage 7 for the last 2 years living through a feeding tube and minute moments of awareness. Last summer she had all sorts of complications liquid everywhere and blood in the urine and was giving a few days left to live. She didn't pass and surpassed all prognosis. On the contrary, she is back to normal levels with platelet and hemoglobin. The neurologist told me she could live another couple years for as long as she keeps the good care. So, judging by the literature and amount of hospital visits, her body will have to give in and she is not letting go. In other words, hard to predict.
I have always thought the "stages" that were given were very general. My husband had stopped talking quite a few years ago. Probably the last time he said "I am waiting for my wife" was 3 years ago maybe a bit longer. But even after a broken hip 3 years ago he walked (with a walker) up until August of 2015. He fed himself and drank by himself up until mid September 2016, He would still kiss me good by or hold my hand up until 1 week ago. He passed this past Tuesday. As you can see variety of thins one can/could do vary. So you can go by guidelines but focus on the individual signs and symptoms. YOU know the person better than anyone and YOU are the one that will be able to tell then the final stages are closer.
It doesn't sound like your mom is in the end stage. She sounds like she's in Stage 6 and has not progressed to the last stage, Stage 7, where the person babbles instead of talks, there is complete incontinence of bowels and bladder, they have difficulty in eating from swallowing issues, the can't walk or sometimes even sit up by themselves. This is the stage before death.
My mother was in stage 5 when evaluated by a geriatric MD. I asked him how long could she survive (she's healthy as a horse at 93) and he told me 2-4 years. She has now progressed to stage 6 and is still eating well, sleeping well, eliminating on her own, walking pretty well and physically functioning as good as can be expected. Since your mom has many complications, (diabetes, heart failure, kidney failure and high blood pressure) her prognosis will be different. Best to get her checked out by a doctor specializing in dementia and ask his/her opinion on what should be done to help your mom (including placement in a memory facility). I'll include your family in my prayers.
Hi Tharaburda05, How sorry I am for your family , that your mom is stricken with this horrible disease at such a young age. Ativan could be a reason she's falling out of bed and/or is agitated. The following information is an excerpt from Drugs.com; COMMON Ativan side effects may include: dizziness, drowsiness, weakness, slurred speech, lack of balance or coordination*, memory problems or feeling unsteady*. (My * placement)
Her MD or Hospice team could either wean her off the Ativan and not medicate her for the anxiety (probably not a good choice) or try another benzodiazepine to calm her (Xanax, Valium, etc.) or better, have her evaluated by a geriatric psychiatrist to see what can be done.
Hospice should provide a hospital bed with rails for your mom. Maybe that would help her from falling out of bed. Your dad's health will start to suffer if he continues in this mode. No one can live like this for very long. Can he apply for assistance from the government (Medicare, Medi-Cal/Medicaid, etc.) to get a home health aide or caregiver to relieve him for a few hours a day? Unfortunately, a nursing home or memory facility may be a better choice at this point but some families are not receptive to that. As Babalou mentioned, she should be evaluated for pain also. I would have the Hospice MD evaluate her immediately to see what can be done for her. That's the whole reason for Hospice, is to relieve suffering. Anxiety (or pain) and screaming 10 hours a day IS suffering, whether you have dementia or not.
Is it possible the Ativan is CAUSING the agitation? Or that she's in pain? Talk to the hospice doctor/nurses about this change. She may need to be moved to a nursing home, for your dad's sake.
I'm so very sorry your family is going through this!
My mom is at the end stage of alzheimers....she is 63...she was diagnosed 7 years ago officially..but had her 1st scan 10 years ago where it showed white mass on he brain (she never told us.) She was a cardiac nurse, and she diagnosed herself b4 the doctors did...This had been a very hard road...not only does she have this, but her heart is failing, her kidneys are failing (bc of being a diabetic), she has high blood pressure....and last year she had necretizing facicitis (the flesh eating bacteria.) My question is...we have her on Hospice..and they are great....but she is falling a lot..out of bed. She is becoming more agitated, not her "normal alzheimers self"....she is up so much throughout the night.....screaming at least 10 hours a day (even with adavan..and other meds prescribed.) I am just wondering has anyone had this experience?? and how long is she going to be in this misery?? She is at home w my dad...and my dad is wearing thin.....he looks horrible...I go over every day to try to relieve him....but he has her all the other time...
My mom passed from cancer before her dementia reached the end stage but...one thing hospice nurses helped me to understand about the human body is that when a person is coming to the end of their life their body naturally knows what it needs or doesn't need anymore as far as eating and drinking. I was terrified that my mother would loose consciousness and not be able to communicate her thirst or hunger to us and in turn suffer or even die from starvation or dehydration. The nurses then explained to me how the body knows what it needs or doesn't need anymore and forcing food or fluids through a feeding tube or even iv or even by mouth will not help or strengthen your loved one and reality will only cause discomfort as the body is no longer able to process and digest the excess amounts being forced and can even lead to internal drowning..pneumonia..and fluids being retained throughout the body. So at the end you just have to remember that you can't control the quantity of time you have left but you can do something to ensure the quality so keep favorite foods and drink on standby and offer but respect your loved ones appetite and desire or lack of.this worked well for my mom.
According to the website Alz; "The late stage (Stage 7 or last/end stage) of Alzheimer's disease may last from several weeks to several years." No specifics, different for everyone. So sad at this stage as every shred of the loved one's personality is gone. My mom is in Stage 6 and, at times, she knows she's very confused (she's not aware of it at other times) and says she wants to die because she's "all screwed up in the head and because of the headaches too". You just feel so helpless. Why do they have to go through this and suffer? (And we too, who are helplessly standing by). That's the 1st question I'm going to ask God when I'm in His presence. (I've got a lot more after that one.)
Some people may last longer than others. I have seen patients in all stages dye and it isn't necessarily the last one. I struggled with the feeding tube decision even now that my mother has had the feeding tube for two years. She has the proper nutrition, medicine, and hydration as the medical advise convinced me to do it. But I don't think my mother would have want to live in the almost vegetative stage she continues to leave and I don't have the courage to stop the feeding. My mom has been in and out of the hospitals and living with monthly UTIs and antibiotics to fight the infections. Some people call it killing her if I don't feed her but I call it a slow death and unnecessary suffering for all.... I know I wouldn't want to be living artificially and in my experience a feeding tube is living artificially without any hope of getting better.
Help16...CALL Hospice! Hospice will help you out with supplies and equipment. All you have to do is call and ask that she be evaluated for Hospice Services. There is a very good possibility that she would qualify. Once you are on Hospice you will also have access to a Social Worker that may help find other resources for you. The Hospice that we are with has volunteers that will come in and sit with your Mom while you run errands. Volunteers usually can not do "hands on" care but will be able to help with eating and helping to clean up. The worst that can happen when making a call to Hospice to determine if a person is eligible is that the answer will be NO. CALL!!! Oh, cal a few and ask about their services and how they operate. There are For Profit Hospice and Non Profit Hospice. The one I am with is a Non Profit and I think that may make a difference in the quality of care. (personal opinion on that)
Help16, your profile says you live in Texas - one of the states that refused the expanded Medicaid and is not geared to keeping indigent family members at home. So there is not much in the way of assistance for long-term care at home if your parent didn't purchase insurance and does not have a pension or much social security income. Your mother should have a Medicaid worker assigned to her - they can tell you if you qualify for any additional caregiver hours (but it will never be 24/7 and rarely every day). You can check to see if she qualifies for SNAP benefits or Meals on Wheels to help with food costs. You can see if there are churches that have volunteers in your area (lists of that for non-members are very small). If she was married to a veteran, she might qualify for Aid and Attendance through VA, but you would need to apply for that (google free assistance with VA Aid and Attendance application or read on this site). Unfortunately, especially in states like Texas, family and friends are pretty much on their own for paying for care to keep a loved one out of an institution. Texas has low tax rates and no personal income tax which makes it an attractive business state, but has few government funded social services to help family and friend caregivers due to budget constraints. It may be time to look into a family care home or facility nearby that offers care because funding for home care in Texas is very limited.
My Mother is 89 she had a mini stroke which brought on dementia she is taking a med for that which seems to help a lot. I hold a full time job and for a year now paid for someone to sit with her during the day so I can continue my job in order to help support and keep health insurance on my family. My siblings and I rotate staying at night so she is not ever alone she is unable to care totally for herself anymore. Needs help getting up and down, walking, someone has to cook and clean for her, and help with personal hygiene. But my funds have been exhausted. I will be lucky to have enough to cover one more month of care. I am desperate to find some kind of government help. She is on Medicare and Medicaid but thus far have pretty much been told until she is ready for hospice (at the very end) there is no help. Is this true? Are there no assists in long term care when a parent wishes to remain home?
My mom, who is suffereing from AD, wrote out her POA and her Health Care directive years ago. I know what she wants and I will have no problem doing what she said. Thank god for those pieces of paper!
@jwatson911....you might want to start a new conversation on this. There are many people here that will give you some great suggestions. I have a few for you. 1.).. You and other members of your family should look into a Support Group.There are support groups for spouses or significant others as well as family and caregivers. 2.).. Start now getting papers in order. POA for Health Care and Finances. I suggest 2 different people. If your Mom is not around you may need to establish Guardianship. I suggest you talk to a lawyer that specializes in Elder Law. 3.).. Decide now with your Dad's input if possible what course of action you will take if he needs Assisted Living then Memory Care. And I can almost guarantee he will later deny that he agreed to enter a facility. 4.).. Decide if you are going to keep him at home what your role will be and if there are other family members what they will do. And if you have funds, rather your Dad has funds to hire caregivers. You will eventually need someone with him 24/7. 5.).. Look into all avenues of help that might be available to you/him. Is he a Veteran? if so the VA might be a great place to start. If you have a Senior Services Agency in your area call them. Is he eligible for Medicaid? If so get the paperwork started Yesterday! 6.).. Realize now that this is a fatal disease and no medication will stop it. He will get worse. There may be a slow progression or it may be fast or it will be a bit of both. Appreciate the little things now. Do everything you can to eliminate his frustration as that will make things easier for you. Change 2 words in your vocabulary. Do not say He WON'T do..... to He CAN'T do.. You can not get angry or upset at something that he can't do any longer. The not doing is not of his choice.
Hello, I'm glad I found this site! My Dad (81) is in the early stages of AD. I am trying to prepare as much as possible. I am a surgical first assistant, but that doesn't mean squat when it comes to this! The insight from people who has or are going through this is invaluable! I am VERY sad about what I know is coming, I just want to be as "mental" as possible.
There are members here who've had great success with loved ones getting treatment at Senior Behavioral Health hospitals. Sometimes it takes an inpatient setting to get psychiatric meds right; I hope this is the case with your mom.
Prayers for you ad your mom Stlatracy. I am so sorry to hear about your mom. I will say that I've never heard of someone who is end stage dementia getting an initial diagnosis of bipolar. I'm no expert, but that just seems quite unusual. I would think that someone with severe dementia would be exhibiting certain behavior that would be attributed to dementia. Maybe, there's something that I am not aware of.
I am glad she's in the hospital where she can get proper care.
My mom has had dementia for several years, recently diagnosed with bipolar disorder, and I was told today she was "end-stage" dementia. She has been living with my husband and myself. Over the last two to three weeks she has become very manic with episodes / moods of crying and loving and, almost instantly, yelling and screaming, throwing things, pulling hair, trying to get out of the house (to name a few.) Brought her to the ER, finally on Friday am, stayed in ER OVERNIGHT until Saturday morning when they could find a behavioral health hospital that would accept her. I am just learning about this and I am scared and very concerned. Any comments would be appreciated. May God bless us all with the strength to make it through this horrible disease process. Thank you!! ☺
She has been in late stage dementia for over 4 years. Her hunger is still there so she finishes her meals, even if they are pureed. She drinks her fortified shakes. And she speaks, mostly garbled, but still speaks. She is in a wheelchair or in bed. Totally incontinent and starting to contort her legs and fingers. She has a pressure wound on her foot that grew quite large, but we have it under control now. It has been a full year with this wound and we see a specialist every 6 weeks and have it treated every other day with a home health care nurse. Hospice wanted to do away with the specialist visits and did not treat the wound like the home health care nurse did. They instead did a version of that treatment which showed they did not intend to get it better, but maintained that it is what it is and will probably get worse. I did not like that attitude at all. So I just continue to alter between one version of care and the possibility of hospice which would let it get out of control and probably kill her. So this is hard for me. It would be one thing if mom had cancer and I knew it was killing her and she had just a few weeks left. With this food wound, if I called in hospice, it would really be me giving her the death penalty a lot earlier than she would if she had the proper care. The guilt is killing me, but I also do not want her going to the hospital for a fall or broken hip or anything like that because she does not need major medical intervention at the stage of the game. I am rambling now, so I will stop here. Thanks for listening.
So difficult for family members to let go. I think that all Alzeimer's patients, having accepted the inevitability of their diagnosis, should while they still have a sound mind, make an Advanced Directive document, Living Will, or sign a consent form to refuse aggressive life-continuing treatments in the final stages of their disease. A DNR (Do not resuscitate) order is not sufficient.
I bathe her & make her as comfortable as possible but have made peace with the fact that I am losing her. Thanks once again.
At my mothers age and condition; once this happens, I will consult Hospice and Palliative care first before I make decisions. I've watched too many people suffer for weeks and then call in Hospice or palliative care once its too late.
Should read..
As you can see the variety or things one can/could do vary......
My husband had stopped talking quite a few years ago. Probably the last time he said "I am waiting for my wife" was 3 years ago maybe a bit longer. But even after a broken hip 3 years ago he walked (with a walker) up until August of 2015. He fed himself and drank by himself up until mid September 2016, He would still kiss me good by or hold my hand up until 1 week ago. He passed this past Tuesday.
As you can see variety of thins one can/could do vary.
So you can go by guidelines but focus on the individual signs and symptoms. YOU know the person better than anyone and YOU are the one that will be able to tell then the final stages are closer.
My mother was in stage 5 when evaluated by a geriatric MD. I asked him how long could she survive (she's healthy as a horse at 93) and he told me 2-4 years. She has now progressed to stage 6 and is still eating well, sleeping well, eliminating on her own, walking pretty well and physically functioning as good as can be expected.
Since your mom has many complications, (diabetes, heart failure, kidney failure and high blood pressure) her prognosis will be different. Best to get her checked out by a doctor specializing in dementia and ask his/her opinion on what should be done to help your mom (including placement in a memory facility).
I'll include your family in my prayers.
How sorry I am for your family , that your mom is stricken with this horrible disease at such a young age.
Ativan could be a reason she's falling out of bed and/or is agitated. The following information is an excerpt from Drugs.com;
COMMON Ativan side effects may include:
dizziness, drowsiness, weakness, slurred speech, lack of balance or
coordination*, memory problems or feeling unsteady*. (My * placement)
Her MD or Hospice team could either wean her off the Ativan and not medicate her for the anxiety (probably not a good choice) or try another benzodiazepine to calm her (Xanax, Valium, etc.) or better, have her evaluated by a geriatric psychiatrist to see what can be done.
Hospice should provide a hospital bed with rails for your mom. Maybe that would help her from falling out of bed. Your dad's health will start to suffer if he continues in this mode. No one can live like this for very long. Can he apply for assistance from the government (Medicare, Medi-Cal/Medicaid, etc.) to get a home health aide or caregiver to relieve him for a few hours a day? Unfortunately, a nursing home or memory facility may be a better choice at this point but some families are not receptive to that. As Babalou mentioned, she should be evaluated for pain also.
I would have the Hospice MD evaluate her immediately to see what can be done for her. That's the whole reason for Hospice, is to relieve suffering. Anxiety (or pain) and screaming 10 hours a day IS suffering, whether you have dementia or not.
I'm so very sorry your family is going through this!
Once you are on Hospice you will also have access to a Social Worker that may help find other resources for you. The Hospice that we are with has volunteers that will come in and sit with your Mom while you run errands. Volunteers usually can not do "hands on" care but will be able to help with eating and helping to clean up.
The worst that can happen when making a call to Hospice to determine if a person is eligible is that the answer will be NO.
CALL!!!
Oh, cal a few and ask about their services and how they operate. There are For Profit Hospice and Non Profit Hospice. The one I am with is a Non Profit and I think that may make a difference in the quality of care. (personal opinion on that)
1.).. You and other members of your family should look into a Support Group.There are support groups for spouses or significant others as well as family and caregivers.
2.).. Start now getting papers in order. POA for Health Care and Finances. I suggest 2 different people. If your Mom is not around you may need to establish Guardianship. I suggest you talk to a lawyer that specializes in Elder Law.
3.).. Decide now with your Dad's input if possible what course of action you will take if he needs Assisted Living then Memory Care. And I can almost guarantee he will later deny that he agreed to enter a facility.
4.).. Decide if you are going to keep him at home what your role will be and if there are other family members what they will do. And if you have funds, rather your Dad has funds to hire caregivers. You will eventually need someone with him 24/7.
5.).. Look into all avenues of help that might be available to you/him. Is he a Veteran? if so the VA might be a great place to start. If you have a Senior Services Agency in your area call them. Is he eligible for Medicaid? If so get the paperwork started Yesterday!
6.).. Realize now that this is a fatal disease and no medication will stop it. He will get worse. There may be a slow progression or it may be fast or it will be a bit of both.
Appreciate the little things now.
Do everything you can to eliminate his frustration as that will make things easier for you.
Change 2 words in your vocabulary. Do not say He WON'T do..... to He CAN'T do.. You can not get angry or upset at something that he can't do any longer. The not doing is not of his choice.
I am glad she's in the hospital where she can get proper care.