Expert: Mary Gordon - 1/31/2011

Question
QUESTION: Hi

My mum is 64 and is in the final stages of vascular dementia.  Her decline has been extremely rapid I'm sure also more so because of the sudden death of my father 2 years ago. In less than 2 years she has gone from cooking and still driving to being unable to speak and sleeping deeply all the time and having a catheter in. Mum fell and broke her hip 6 months ago and has not walked since then and in the last 6 weeks she has had pneumonia and nearly died.

I live 3 hours away and have 2 small children and agonize over not being able to see her often thou when I have seen her the last several times she does not open her eyes.  My question is how long do you think she can go on like this, I don't want her to die by herself and want to be there for her but I need to have some sort of plan so I can organize my little children so I can go and be with her.  I just want to be with her in the final stages of her life. It is very difficult as Mum appears to have no quality of life and I don't understand why she keeps lingering.

ANSWER: Hi Catherine, I know this is extremely difficult to deal with, and I have been in similar shoes.

Unfortunately, given that your mother has had such a rapid decline from a series of small strokes, it's very hard to know what will happen next. Certainly, she is likely to continue going downhill, and is likely to have more strokes or blockages. However, physically, she is relatively young, and less likely to have the constellation of health problems that so often hasten the end for the frail elderly.

Generally, as you probably know signs that the dementia is winding to its natural end include the wasting and weight loss you are seeing, loss of interest in food and drink, sleeping more and more and being less and less responsive to anything or anyone around them, weakness to the point they have to be propped in bed or a chair or they will flop over (i.e. they can't even hold their head up). They also often start to get opportunistic infections as their immune systems break down.

You don't mention if she is in a palliative program such as hospice. If not, you may want to look into whether her physician and caregivers believe she could be eligible for such an option. To qualify, generally the consensus has to be an estimated lifespan of six months or less. You also don't mention if there are reasons she is where she is. If you are her closest family, are there facilities closer to you that could provide good care for her, and not be such an onerous distance for visits. This may go on for a while if she has a strong heart and lungs, and is basically healthy other than her dementia.

If she is in hospice, workers there will be very familiar with the signs of approaching death, and will probably be able to notify you that she seems to be failing and that her passing appears likely to take place within the next few days.

Signs that death is coming in the next days or weeks are similar to the signs they have a limited number of months left, but more intensely specific. Keep in mind that these are general signs that apply to anyone - since she has a dementia, she will already be confused, not very aware of her surroundings and not very responsive.

Loss of appetite: Energy needs decline. The person may begin to resist or refuse meals and liquids, or accept only small amounts of bland foods (such as hot cereals). Meat, which is hard to digest, may be refused first. Even favorite foods hold little appeal.Near the very end of life, the dying person may be physically unable to swallow.

Excessive fatigue and sleep: The person may begin to sleep the majority of the day and night as metabolism slows and the decline in food and water contribute to dehydration. He or she becomes difficult to rouse from sleep. The fatigue is so pronounced that awareness of immediate surroundings begins to drift.

Increased physical weakness: A decline in food intake and lack of energy leads to less energy, even for activities like lifting one's head or shifting in bed. The person may even have difficulty sipping from a straw.

Mental confusion or disorientation: Organs begin to fail, including the brain, even beyond what has been caused by the dementia. Higher-order consciousness tends to change. The person may not be aware of where he or she is or who else is in the room, may speak or reply less often, may respond to people who can't be seen in the room by others, may seem to say nonsensical things, may be confused about time, or may act restless and pick at bed linens.

Labored breathing: Breath intakes and exhales become raggedy, irregular, and labored. A distinctive pattern called Cheyne-Stokes respiration might be heard: a loud, deep inhalation is followed by a pause of not breathing (apnea) for between five seconds to as long as a full minute, before a loud, deep breath resumes and again slowly peters out. Sometimes excessive secretions create loud, gurling inhalations and exhalations that some people call a "death rattle." This can sound alarming, but the person is not aware of it and doesn't seem to be uncomfortable.

Social withdrawal: As the body shuts down, the dying person may gradually lose interest in those nearby. He or she may stop talking or mutter unintelligibly, stop responding to questions, or simply turn away. A few days before receding socially for the last time, the dying person sometimes surprises loved ones with an unexpected burst of alert, attentive behavior. This can last less than an hour or up to a full day.

Changes in urination: Little going in (as the person loses interest in food and drink) means little coming out. Dropping blood pressure, part of the dying process (and therefore not treated at this point, in tandem with other symptoms), also contributes to the kidneys shutting down. The concentrated urine is brownish, reddish, or tea-colored.

Swelling in the feet and ankles: As the kidneys are less able to process bodily fluids, they can accumulate and get deposited in areas of the body away from the heart, in the feet and ankles especially. These places, and sometimes also the hands, face, or feet, take on a swollen, puffy appearance.

Coolness in the tips of the fingers and toes: In the hours or minutes before death, blood circulation draws back from the periphery of the body to help the vital organs. As this happens, the extremities (hands, feet, fingers, toes) become notably cooler. Nail beds may also look more pale, or bluish.

Mottled veins: Skin that had been uniformly pale or ashen develops a distinctive pattern of purplish/reddish/bluish mottling as one of the later signs of death approaching. This is the result of reduced blood circulation. It may be seen first on the soles of the feet.

Because this process is so unpredictable, if you can have her moved closer, it might make your life a lot easier. What we found as my mother in law lurched towards the end was that we were getting all kinds of calls about various crisies, requiring us to run to her side. In the end, she began to refuse food and drink - not sure if she felt no hunger or thirst, or just had no idea what the food was for, or why she would be interested in it, much less what she was supposed to do with it.  Even at that, the final spiral was a full six weeks. It was gruelling. I'm not sure how you would manage so far from her, when a visit means scrambling for childcare and at least 6 hours of driving to get there and back.

When my mother in law went into the hospice program, we decided to discontinue all curative treatments and focus on keeping her comfortable and peaceful. We had a DNR order on her, and all of us concurred that we would only allow medications and measures to ensure she was in no pain or distress. She also had a living will and we wanted no extraordinary measures to keep her alive. We would not allow her to be taken to hospital, given procedures, tubes, machines, tests and so on. The poking and prodding was done. We just wanted her serene and totally calm and as happy and content as possible. Had she developed cancer or heart problems, we would have allowed nature to take it's course, other than keeping her from pain. The hospice staff were wonderfully kind and supportive to all of us.

I'm not sure what you have discussed with her care team, but you may want to have a good chat about what they can offer, what they think is likely to happen in the coming months, and about your very strong desire to be with her in her final days.

She may live on like this for some time, but equally, may develop an infection and be carried away by it or by another stroke in a heartbeat. They are both as fragile as glass and as tough as nails. They survive things you don't think anyone could, but sometimes are carried off by what might seem like a very minor thing.

I know I haven't really been able to give you any good answers. Hang in there, you are not alone.

Mary

---------- FOLLOW-UP ----------

QUESTION: Thanks Mary that is full of useful information I know my question is a bit like "how long is a piece of string" but I guess I'm looking for answers that may not be there.  Mum is in full private hospital resthome care.  I haven't moved her closer to me as mum has lived in the area for 40 years and has many friends who still visit her and I have 2 younger brothers who live within 30 minutes of mum but they are not involved with mum's care as they have put it in the "too hard" basket.  So I felt selfish to move her closer to me as I am the only one that she would know and I have been told the trip would be difficult for her and I may need to fly her.  Thanks Mary, that gives me something to reflect on through this roller coaster of a ride.

Answer
Hi Catherine, glad to hear from you.

Here is a NZ hospice organization
http://www.hospice.org.nz/cms_display.php?sn=1&st=1

Perhaps your mother being younger is the difference with the friends. My mother in law was almost 80 when she died and she'd had dementia for many years. Her friends stopped visiting when she no longer really knew them, and could no longer interact in any meaningful way (couldn't walk or talk etc.).  She also looked really dreadful in the later stage - very thin, no teeth, blank eyed, propped up in bed. We'd sometimes find her friends out in the hall weeping. Eventually, I think it just got to be too hard on most of them - and after all, unlike your mum's friends, Dolli's friends were many of them quite elderly and frail themselves.

My mother in law had no idea where she was by mid dementia. At that point, she had to move from a really lovely assisted living facility where she had a huge room overlooking a treed ravine, to a locked dementia ward with a tiny bedroom that looked out on city streets.  The two facilities were miles from each other, and completely different, but she did not realize she had moved. I expect her memory was so impaired that she just couldn't hold a thought long enough in her mind to puzzle it out. She was sometimes ask to go home, but if you questioned her, where she wanted to go was not the apartment of her later years, the home she raised her family in with her husband, or even to our house. She wanted to go home to her parents where she thought everyone from her girlhood was waiting as though time had stood still.  

So, she could have been anywhere at all, and it would have been all the same to her - just a swirling jumble of everywhere and nowhere. So, you have to ponder if your mother is at that point - where her physical location has no meaning to her. Location might have some real meaning to you though, particularly in terms of stress levels, as you struggle between the demands of motherhood and looking out for your mum. I totally understand that dilemma. We had three children born during Dolli's decline.

I guess what I'm trying to say is no matter what you do, give yourself permission to put your own needs into the equation. That isn't selfish - it's just sensible, and sane. You don't want to end up frazzled and frantic, particularly when there are little ones who also need their mum! This is even more true if you are the primary family member who deals with your mum's decisions and who gets the late night calls when there is a concern.  

I'm thinking of you. No such thing as a right answer for this one, is there. At the end of the day, you have to be at peace with whatever happens, and know you did the best you could with your situation. No beating yourself up!

Mary