Expert: Mary Gordon - 1/7/2006

Question
Dear Mary,

My ex-husband (the father of my four children) is 82 and in a
locked facility here in Sacramento, California, receiving what we
feel is inadequate care. From your list of stages it appears he
has gone past all the steps in level 6 and is in early stage of level
7.

This week he was diagnosed with pneumonia. (This diagnosis
came after my daughter and I both complained about his
breathing and they took xrays). During the month that he has
been at this facility he has lost over 15, and possibly even 20
pounds. He is only 5"5" and although he was always a very
muscular man, he has been wasting away. He can still walk and
does so almost constantly, is restless, and has irregular sleep
patterns. He responds to his name, doesn't initiate conversation,
but will answer some questions with a few coherent words. He
does not want to eat, refuses his medication and the breathing
treatments for his asthma/pneumonia.

My 33 year-old daughter (a working mother of two, 10 & 13)
goes to the facility daily, sometimes more than once a day, to
check on him, or help him shower, get him to take his medicine,
and fight with the health care providers about his level of care,
trying to convince them that — while we all realize that there is
only one outcome to this disease — she is not going to accept
that he has to die without being treated in a caring and dignified
manner (for instance, being left with soiled pull-ups, not putting
his pajamas on him at night, not covering him with enough
blankets, not contacting her when he refuses meds or food so
she, her sister, or I can go out and try to cajole him into taking
his pills or eating).

It is very frustrating to her to have them brush off her concerns
by just saying, "well, you know, this is the way the disease is,
and we will try to give him his medicine twice but if he still
refuses, well, he has the right to refuse and we can't force him to
take the medicine."

He is sometimes very agitated, and in fact hit one of the CNA's
several times the other day while she was trying to get him
undressed to take a shower. He was upset about it afterward,
and said he didn't know why he hit her. Other days he is very
docile, the mood swings swing.

My daughter feels trapped in the situation, the facility is the one
Kaiser put him in to get him regulated with medicine, “toilet
training,” and to help with the behavior and moods. They called
it transition training. However, they now feel he has benefitted
as much as he can and he is now just a "regular" resident of the
facility.

Although he has some retirement income, and social security,
his small savings will soon be depleted by the $4,700 per month
they are charging for his care. We are still trying to figure out
what that money is paying for since he isn't eating, doesn't take
his medicine, and has been left in soiled underclothing, and not
been given his breathing treatments, etc, etc, etc. My daughter
has been told that this is one of the only facilities that will take
"care" of him, once his money runs out. It of course is a very
depressing place but it is only a few miles from my daughters,
so visiting him is much easier than it would be if he were further
away.

I'm not sure what I expect you to be able to offer in the way of
suggestions, encouragement, or recommendations, but I've read
several of your responses to other people and found them
comforting. I think I just needed to vent as it is such a
heartbreaking situation for all people involved... as you so
obviously know.

I guess what I wonder the most is.... when will he just go to
sleep and not wake up? I just want it to be over for him. How
long is he going to have to exist in this condition? Will he have
to go through all of the awful stages of level 7?

Thank you for having a place for me to vent my frustration over
seeing a man who was always strong and energetic — who
worked hard, was ready to help others, was able to fix anything
(even if it was with bailing wire and duct tape), who always
provided for his family, cared about his relatives, and never
turned his back on a neighbor or friend in need — going
through this and my feeling helpless to do anything about it.

Thanks again.
Carole


Answer
Hi Carole - I hear your frustration. Listening to stories like yours makes me very, very glad I live in Canada and don't have to cope with the US insurance system. My mother in law's care even in the very heavy care nursing home stage never cost more than $2000 a month - her medical care was covered by our universal insurance, and the home was not for profit, and fees were based on a sliding scale set by total income, not total assets.

From your description, he sounds like he's still in Stage 6. The fact he can talk, walk, answer some questions, and is still agitated and feisty means he still has more function than people in the final stage.

It does kind of amuse me, in a very black way, that Kaiser would think a person in mid to later Alzheimer's could be "toilet trained" in any way. Once continence problems start, they don't improve, and there is absolutely nothing anyone can do about it. A person with progressive brain damage can't learn new skills. Urinary incontinence comes first, followed by bowel incontinence - its as though they don't feel the urge to go, or if they do, just have no idea what it means or what to do about it. What do they mean by "transition training"? Getting used to a facility? When they get to the later stages, it really doesn't matter where they are in terms of surroundings, since everything is such a jumble to them, they are pretty much oblivious to where they are. Just to give you an example, in early Stage 6, my mother in law moved from a very nice assisted living facility to the locked AD ward in another place, right across town, and she was so confused, she wasn't even really aware she had moved to an entirely new place. Her only comment at the time was that she thought they'd painted the dining room - she must have noticed something had changed, but it didn't register on her that it was a completely different place. She never commented on the change of her room itself - pretty sad.

I know you don't want to hear this, but my mother in law lived for two full years in stage 7. She went from the Alzheimer's unit to the heavy care unit when she lost her ability to walk - she had a fall, and in the aftermath, couldn't cooperate with the therapy needed to get her back on her feet, so that was the end of that  Intelligible speech evaporated shortly after that. So, we pretty much had two years of her in a wheelchair, and later propped in bed, unable to do much of anything, not knowing anyone, not talking, sleeping all the time, being hand fed etc. I suppose her long survival in the end stage was a testament to both her robust health in other ways than the AD, and the good care she got.

If your ex-husband has other health issues, his life may be limited in the last stage, since any kind of complicating illness becomes extremely difficult to diagnose or treat in someone with advanced Alzheimers - and many families elect not to put their loved one's through medical procedures at that point. Palliative care becomes the goal (i.e. comfort measures to keep them as free of pain and as happy and content as possible, but no active treatment).

The weight loss is depressing - but unfortunately, it is fairly normal. In the later stages, not only do they seem to lose their appetite, but they start to have major coordination issues related to the brain damage. Chewing and swallowing start to become very difficult, and this contributes to the weight loss, and is why they end up having to eat pureed foods and thickened liquids (i.e. they choke on textured foods or thin liquids).  We found with my mother in law that she did better if they fed her in the ward rather than take her down to the main dining hall. I think the bustle and noise was too confusing and distracting - she would eat more if put in front of a tray somewhere quiet on her own. Have they tried giving him supplements like Boost or Gain to try and keep his weight up?

The pacing may be contributing to his weight loss - he may be burning through a lot of calories walking back and forth. If they put him in there to get his meds stabilized, have they tried anti-psychotics like Respiridol to see if that would reduce the agitation? Other medications in the same class that may be tried include haloperidol (Haldol), Zyprexa, Clozaril, Geodon and Seroquel. It can't be very pleasant for him never mind his caregivers if he is distressed and wound up.

The disrupted sleep patterns are also fairly normal - that is related to brain damage disrupting normal rhythms. The Alzheimer's unit where my mother in law lived worked hard at keeping ambulatory residents from sleeping during the day, since this contributed to sleep problems at night. An anti-psychotic might help with the sleep issue as well - for many people, it helps a lot in terms of settling them down.

You are absolutely right to be concerned about the quality of care he's getting. There is no excuse for neglect, particularly given the cost vs. the actual amount of care he needs. Has your daughter had a conference with the facility? We had regular discussions with the director of care, her doctor, the staff on the floor (i.e. we'd book something and get everyone together to review how things were going, make sure everyone was on the same page in terms of her care, approaches, concerns etc.).

Your daughter should be carefully documenting both the neglect and what she has done (i.e. what she sees, who she told, what they did about it, right to names, dates, frequency of her visits or calls). This is in preparation for a formal complaint if working closely with them produces no improvement. She should try a staged approach - first verbally telling staff on his unit, rachetting up to complain to supervisors, and then to the director of care, then putting it in writing in a letter. Ultimately if nothing else works, she can make a formal complaint (see below for how to do that). At the same time, it might be a plan to see if there are any other facilities in the area that will accept Medi-Cal/Medicare recipients, since if the relationship with this facility goes south, he may need to be moved. Given that, it is worth trying hard to work with the facility in a positive way (see if she can catch flies with honey rather than vinegar).

Just fyi, here are a couple of sites on Medi-Cal and Medicare in California.
http://www.calregistry.com/resources/medi-cal.htm
http://www.medi-cal.ca.gov/default.asp
http://www.calmedicare.org/lowincome/medical.html

Here is a site that lets you check the ratings for nursing homes in Sacremento

http://www.canhr.org/NH_Data/data_html/SacramentoCo.html

Here is another site that provides information on making complaints about the quality of care
http://www.healthscope.org/health_plans/senior_medicare/choosing_a_nursing_home....

Hope this helps a bit. I know how awful this all is - no one deserves this disease - its just a nightmare for everyone involved. Not your ex, not your daughter, not you. It is just heartbreaking to see any human being dismantled neuron by neuron and not really be able to do much about it.

Your ex is lucky to have family looking out for him! I'm thinking of you.

Mary G.
Toronto  (below I've pasted descriptions of Stage 6 and 7 just for reference)

Level 6
Severe cognitive decline (Middle Dementia or Moderately Severe AD). May occasionally forget the name of the spouse upon whom they are entirely dependent for survival. Will be largely unaware of all recent events and experiences in their lives. Retain some knowledge of their past lives but this is very sketchy. Generally unaware of their surroundings, the year, the season, etc. May have difficulty counting from 10, both backward and sometimes forward. Will require some assistance with activities of daily living, e.g., may become incontinent, will require travel assistance but occasionally will display ability to orient in familiar locations. Diurnal rhythm frequently disturbed. Almost always recall their own name. Frequently continue to be able to distinguish familiar from unfamiliar persons in their environment. Personality and emotional changes occur. These are quite variable and include
(a) delusional behavior, e.g., patients may accuse their spouse of being an impostor, may talk to imaginary figures in the environment, or to their own reflection in the mirror;
(b) obsessive symptoms, e.g., person may continually repeat simple cleaning activities;
(c) anxiety symptoms, agitation, and even previously nonexistent violent behavior may occur;
(d) cognitive abulla, i.e., loss of willpower because an individual cannot carry a thought long enough to determine a purposeful course of
action.

6a - Requires Assistance dressing
6b - Requires Assistance bathing properly
6c - Requires Assistance with mechanics of toileting
6d - Urinary incontinence
6e - Fecal incontinence

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