AboutMary Gordon Expertise Several years direct experience as caregiver for family member who died of end stage AD. Did lots of research and dealt with a lot of health care professionals and caregivers over the 7 years from diagnosis to the end. Used various care options from community based resources to increasing levels of institutional. Mother of three, two born during our loved one's decline, so I know what it is to be the ham in the sandwich, taking care of the older generation and the younger at the same time and trying to balance everyone`s needs. Ask me, I`ve probably been there, done that. We made lost of mistakes and learned everything the hard way - but you don`t have to! If I can`t answer your question, I`ll steer you to a place or person who can.
Experience Currently a program manager for a large utility company. My Alzheimers experience comes from having the illness in our family. Out of necessity, we did a lot of research in order to understand the disease, plan for what might come next, and make the right decisions to help and support our loved one. Please note, I am a Canadian living in Toronto, and therefore am not the best person to ask about US regulations and insurance rules!
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Followup To
Question -
My father,88,is in end stage alzheimers. He is in a
nursing care facility. My mother is still living. The stress on her (86) is great and affecting her health. How long does "end stage" last. I think he
has been in this stage for 5 months..swallowing is
delayed, sleeping alot, not very communicative..
My mom is starting to ask "how much longer can he be this way? this is all so unkind...thank you for your insight.
jo
*****Thank you so very much for your time and thoughtfullness and pointed
answers to my concerns. He does have a living will, we have discussed
no extra measures to resustiate him, no tubes, etc. forturnately he
was quite clear regarding his wishes. No tx for any cancer, illness
etc. other than pain relief. We have prepared the way for him to go..
I cannot thank you enough for covering so many areas and supporting
what we have already done. He is very well cared for and his needs
met...as a family we are preparing for goodbye. Thank you for being
direct with your responses..it has helped more than you know.
jo
Answer -
Hi Joann,
I know what a painful time this is for you. This could go on for weeks, or months or years - which is not what anyone with a loved one in this state wants to hear.
AD is now considered a fatal illness, as you know. In the past, survival rates after the onset of dementia were thought to be from 5 to 9.3 years. A study was published in 2001 in the New England Journal of Medicine produced some new results. Data came from the Canadian Study of Health and Aging. They tried to calculate the exact onset of dementia in 821 people over 65 years old randomly selected from 10,263 volunteers included in the Canadian study. The actual age of onset was calculated using proven clinical methods. Then these patients were followed to determine how long they survived after onset of dementia. After a careful statistical analysis it was determined that the estimated average survival rate for all the subjects was 3.3 years, much lower than previous studies had shown. This actually doesn't surprise me at all, given that having AD makes diagnosing and treating many illnesses very difficult - and many families just decide NOT to try and deal with other health issues.
So, what does this mean for your situation? That there is no way to predict - not exactly what your poor mother wants to hear. My mother in law was 73 at diagnosis and survived about 6 years after that. She lived for 2 years in the end stage, incontinent, unable to talk, walk, feed or do anything for herself, recognize anyone etc. However, she was younger than your father, and robustly healthy other than the Alzheimers.
If I was a betting woman though, I'd be thinking the end is not far for your father, given that he is quite elderly. I guess what you have to ask yourself on the medical front - is he being well taken care of where he is. Is he being physically attended to - kept fed, clean, treated in a respectful and loving way. The doctor may or may not be paying a lot of attention to him - but then the question becomes - is there anything he could do about what is going on even if he were trying? Most of what goes on in the later stages isn't anything a medical doctor can "treat" - and there may be medical issues that you elect NOT to treat deliberately beyond comfort measures.
I know what you are going through - just when you think it can't get worse, it does, and family members ask themselves how much longer can this go on because it is just so painful for everyone.
I don't know if there is a way to prepare. Certainly in our house it was very hard. We found that most family members and her friends stopped visiting during the last two years or so. Once my MIL could no longer talk (just garbled nonsense syllables), and was sleeping all the time, many of them could not figure out what to do with her on visits. She couldn't be taken out, she couldn't walk (she broke her hip and couldn't do the physio, so that was the end of walking), she couldn't be conversed with, she got agitated easily, she was often disheveled (despite excellent staff who worked very hard at keeping her presentable), she was very thin - and the sight of her in such a state was so upsetting, that many just stopped coming. When we came to visit, we'd often find other relatives crying in the hall. Eventually, they just stopped coming.
I think when it comes to AD, the lucky ones who are those who are carried away by other illnesses - because the natural end of AD is pretty brutal on everyone, as I'm sure you have an inkling of - I recall seeing some of the "living dead" in the nursing home long before poor Dolli reached that stage and I just couldn't imagine her like that. Towards the end, the person really is gone in every way that matters - it is like having to have the corpse laid out indefinitely without the closure of a funeral.
I suppose one thing you could do is to talk to your family members about what might come next and what the options might be. If your father has a major illness such as pneumonia or cancer, do you want him treated other than comfort measures (i.e. pain killers). If he had a heart attack or other sudden emergency, do you want them to try to recuscitate him - or let God and nature take their course? Did he have a living will expressing his wishes? I ask because these are things to consider, even if they seem callous. The question becomes - is it kinder to let the person slip away from something like pneumonia, or aggressively treat them and keep them going (which can involve suffering in itself) and then bring them back to their steadily declining existence where they have no quality of life. There are a lot of moral and religious issues involved for many families - and only you know your father, what his wishes were, and also what he has left in terms of awareness and quality of life. If you have a clear idea about his and the families wishes, it may be worth ensuring that the home understands they are not to resucsitate or treat beyond comfort measures - they have to clearly understand it is palliative care only from here on in, as per hospice. Believe it or not, my husband actually posted a large sign over her bed with the DNR order on it, since we had heard of other instances where in the heat of an emergency, other patients with a DNR order HAD been recuscitated against their wishes.
As I know you know, it is very common in later AD for the person to develop serious problems with eating - they can have big problems chewing and swallowing even soft foods (their muscular coordination goes), or, like my mother in law, they completely loose interest in food (not sure if they have no appetite or just have no idea what food is). They can even start to refuse to eat. This means you have to think about artificial feeding or IVs - or letting nature take its course, which is a very hard thing for most families.
This is a very personal thing - but having been through the deaths of many loved ones, I would never permit a feeding tube unless it was a situation where the person was temporarily impaired and there was hope of real recovery to the point where the tubes would be shortly unnecessary - and this is not the case with end stage Alzheimers. At some point, despite our desire to fight death, it seems to me there really are worse things than dying. For me, that would be living on in the twilight, caught between two worlds - and really being held here by loved ones who aren't ready to let go. Your father has enjoyed a full life. If you could restore him to health, I know you and your family would move mountains - but it isn't to be, and perhaps the best way to show your love is doing exactly what you are all doing - standing by him, holding his hand and letting the end of life come. It doesn't have to be frightening. It is a priviledge to be there for them at the end.
That is the choice we made - not something every family is prepared to do. We were fortunate in that my mother in law had written out a living will so we knew what she wanted (no artificial or invasive means to keep her alive, no resuscitation etc.), and we had the support of the doctor, the care facility and our religious counsel, so we were personally at peace with doing what might seem a terrible thing to some people (and something that can create wars within families when there are disagreements about what the right thing to do is). She essentially stopped eating about 6 weeks before she died - she just ate less and less until she stopped despite best efforts. We kept her very comfortable and kept offering her food and drink many, many times a day right to the end (and she continued to refuse, right up to the end). I'm sorry to be so graphic - but it actually was a very gentle death, with my husband holding her hand. She did not seem to be suffering - she just sort of faded away over a period of a couple of weeks. I wonder if what was left of her just decided she had struggled enough and it was time to go.
So, you also must consider as a family how you feel about feeding tubes and IVs when the situation begins to merit those being offered or considered and make those wishes crystal clear to the nursing home so you don't show up for a visit some day and discover he has been "hooked up".
We truly did regard this stage as the slow but inevitable going out of the tide. My husband (her only child) feels very strongly that the choice was the right one for her and for him - that he did the right thing. He regrets that she had to go through any of it, that she got Alzheimers, that some other illness did not mercifully carry her off prior to the last stages - but he does not regret letting her go.
You might also want to talk to your local Alzheimer's support organizations to connect with others who have gone through the late stages and had to make various hard choices. The facility my mother in law was in had semi-annual care conferences with the doctor, the director of care and the family to discuss what was happening, what might come next and what the family's preferences might be - and they were 100% behind our choices (they were actually quite relieved that we weren't interested in fighting a war where there can be no winners).
I know how very painful the entire subject is - and how much you love your father AND your mother and want to do the best for them. My heart breaks for you.
Hope this helps. You are in my thoughts - I know how hard this is - this is the worst part of the long hard road, but the end is in sight, and this is harder on you than on him. He is lucky to have you - clearly he's loved and you are living evidence of the value of his life.
Mary Gordon
Toronto
Answer Alzheimer's is such a nightmare of a disease - and having been in your shoes, I really feel for you and what you are experiencing. I can't think of anything harder and more painful for a family to go through - and people who haven't when good people who deserve better have their lives dismantled and ended in such an awful way.
God sends the families of Alzheimer's patients some bitter lemons, and the only way to make lemonade out of them is to share what we learn, and try and help make the load lighter for others going through similar situations.
I'm glad I was able to help you. Your parents are lucky to have you there for them.
