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!
Question My dad is almost 71 and appears to be in the end stage of alzheimers. He has just been sent home from the hospital after having aspiration pnemonia again. He is completely bed ridden, sleeps almost all the time, only drinks about 4 to 8 ounces of fluids per day and maybe if we are lucky he eats once a day and only little bits. He wears diapers all the time as well. He doesnt remember too many people most times. He also has a pace maker , has had porphyria for many years, suffered many mini strokes, had a few heart attacks and gets blood transfusions about every 6 weeks for another issue. No one can or will give us any idea of how much longer this torture will continue. We arent asking for any specific time line, just some verificatioin that what we believe to be the end drawing near is in fact happening. We cant even get a straight answer as to how long someone can survive on the limited fluid and food he is taking. The doctors have been pushing my mom for a couple of years to place him in the nursing home but she wont. Now especially as the heavy lifting, violent stage has drawn to a close. He no longer wants or asks to get up in his wheelchair, no longer needs help onto his commode chair, no longer requests to get dressed etc. He very seldom communicates and mainly when awake just stares blankly. I am just wondering if there is, in your experiences with many peoples stories any idea of how long approximately this may continue on for.
Answer Hi Bonnie -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. I've been there/done that - my mother-in-law died from end stage Alzheimers and I do remember the long hard road
The most commonly used definition of the end stages is as follows:
(from the Reisberg Scale of 7 stages)
Level 7
Very severe cognitive decline (Late Dementia or Severe AD). All verbal abilities are lost. Frequently there is no speech at all - only grunting. Incontinent of urine, requires assistance toileting and feeding. Lose basic psychomotor skills, e.g., ability to walk, sitting and head control.
The brain appears to no longer be able to tell the body what to do. Generalized and cortical neurologic signs and symptoms are frequently
present.
7a - Speech ability limited to about a half-dozen intelligible words
7b - Intelligible vocabulary limited to a single word
7c - Ambulatory ability lost
7d - Ability to sit up lost
7e - Ability to smile lost
7f - Ability to hold up head lost
So, from your description, he is in the end stage - but he could stay there for a few months or longer, even with the constellation of other health issues he has. However, if I was a betting woman, I would say the end is likely very close - probably within couple of months. Once they stop eating and drinking, the spiral begins to tighten, and things start to shut down entirely.
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 know all too well. One thing you could do is to talk to family members about what might come next and what the options might be. If your father develops any illness - even an infection - do you want him treated other than comfort measures (i.e. pain killers). If he has a 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. Palliative care is an option - and that means comfort measures only, and no further medical treatments.
Doctors may also start to push artificial feeding or IVs - or letting nature take its course, which is a very hard thing for most families. Here is a good article on them, just to prepare you in case the subject is raised (and it certainly would in a nursing home, or if he's hospitalized). http://www.aafp.org/afp/20020415/1605.html
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 your family knows your father, what his wishes were, and also what he has left in terms of awareness and quality of life.
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). We kept her very comfortable but allowed no tubes, no pills, no heroic measures. Her very gentle and peaceful end came about 6 weeks after she essentially stopped eating, no matter what we did to try and encourage her.
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, and also to find out about hospice alternatives as well as respite care options and other resources where you live. Give yourself permission to consider every option - this will be very hard on all of you. We prayed for my mother in law's struggle to be over, and none of us ever thought we'd be in that position - of actually hoping someone would die.
This is a terrible thing for your family - and hospice might be a good alternative. Your job is to love him and make sure he is well cared for - to hold his hand as the tide goes out. That doesn't mean your mother has to take care of him herself 24/7. It can take a terrible toll on the caregivers - not what your father would have wanted, particularly since this may go on for an indefinate time.
Hope this helps - I know how hard this is, and how much you love your parents and want to do the right thing by both of them. So, if it may go on for another few months, its why its likely good to explore the hospice idea - as much for your mother's sake as his. I have heard wonderful things about the supports they can often provide.
