Expert: Mary Gordon - 7/15/2008

Question
Hi Mary

I have a few questions/concerns regarding taking care of my mother-in-law whom has Alzheimer. My husband and I are her care givers.  We have been since prior to her being diagnosed with Alzheimer.  We first came here to help her recover from cancer.  She has had cancer three times. Ovarian, a abdominal (left from the ovarian) and breast cancer. A survivor of seven years now.  

She thought there was something wrong with her two maybe three years prior to being diagnosed with Alzheimer such as noticing her hands shaking and becoming confused when paying her debts.  She sought help with a Naturopathic Physician who treated her with supplements to improve brain function.  Later we took her to a neurologist who diagnosed her with Alzheimer.  We gave her Accept and Nemenda (not sure of spelling).  This was four years ago and has not taken any medication now for a year.  According to Dr. Reisberg's scale of seven stages of  Alzheimer she is in stage six. Fully stage six except she is still continent.  I don't expect her to be much longer because she is really confused about the bodies sensation of going to the bathroom.  She almost doesn't understand it at all. My husband and I care for her five days out of the week and we take her for respite care on the two days we have to work and can not be home to care for her.  My questions are:  What is the regimen of care in stage seven?  How long will we be able to take her for respite care?  Will one of us have to quit our jobs?  Will our current routine still work?  We are not sure what to expect.  How long does stage seven last.  My mother-in-law is 84 and besides cancer has always been healthy.  She has no health problems and takes no medications.             

Thank you for your time,
Linda

Answer
Hi Linda,

The last stage can really be a grinder. My mother in law survived two years in the last stage. She was unable to walk, talk or feed herself, she didn't know who we were or where she was. She couldn't dress herself, answer questions, and had to be bathed and cleaned up constantly. She was totally incontinent. She spent her days staring at nothing, propped in a wheelchair or her bed. They have to be fed pureed food and thickened liquids because they have trouble chewing and swallowing - it can take a lot of coaxing to get much into them. They are very susceptible to infections, they lose weight and muscle, their coordination goes, and they must be repositioned frequently to prevent pressure sores. Its not pretty. It also usually requires some specialized equipment, like a sling lift (to transfer a person from chair to bed etc.) and an adjustable bed with rails (such as a hospital bed).

The care is really about what you would expect to have to provide for a 90 pound 3 month old baby that will never develop further.  Its 24/7, its physically demanding, gruelling, its thankless, and it can go on and on.  Its very hard to predict survival time in the last stages. My mother in law was younger than yours (she was 79 when she died), and had never had cancer or other health issues that might have shortened her life.

Have you thought through your options? Could you hire help? Have you checked out nursing home options near you? Have you investigated hospice options where you live, and what she may qualify for? Have you thought through what you would do if she had a recurrence of the cancer, or developed other health complications? Under what circumstances would you want her actively managed beyond pain control, given treatments and drugs, take to hospital, fed by tube, given an IV, or oxygen ?

One thing to consider is that when she goes into the final stage, she is very unlikely to know where she is or who is looking after her. Right  now, when she still has a grasp on who you are, this is when it matters emotionally, particularly to your husband. His job is to love her and to ensure she's looked after, treated respectfully, and kept comfortable and out of pain and distress. When she enters the phase of more intensive physical care, it will not matter to her anymore who looks after her, much less where she is living. She will not be aware of her surroundings, the time of year, nothing.  Anyone can put the spoon to her lips or change her sheets. No one can love her like he can. He has to be realistic about what both of you can cope with in a home environment. Doing the right thing by her doesn't mean you has to look after her at home, if it is too much for you both. It doesn't help her at all, if the care becomes too hard, and either of you start to resent her as a burden, or get worn down and ill from the stress. If she loved her son at all, she wouldn't that to happen.

Be realistic about what you can cope with at home, and don't feel guilty if your plans for her care change with her changing circumstances and condition. Your husband has a commitment to her, but he also made a commitment to you, and you both have other people who love you and need you. Look after yourselves. Never say never. Give yourself permission to be open to options.

This is not like other illnesses, where you can prepare yourself for a given time frame, and the person remains themselves most of the way. This is like getting ready for a run that may go on for hundreds of miles with no end in sight. She may not survive long, but on the other hand, it may be some years before the end.

Below my signature I've pasted the description of the last two stages. She is lucky to have such a wonderful daughter in law.  I hope this hasn't sounded too bleak. AD is the one disease where a pessimistic outlook is a good thing, because it causes you to think through worst case, and prepare for that - and then if things aren't that bad as fast as you feared, you can be pleasantly surprised you don't have to put your plan into action right away.

Hang in there. She's a lucky woman, and must have been a fine mother to have raised such a caring son.  

Mary

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 maycontinually 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