Expert: Mary Gordon - 12/7/2007

Question
hi
 mom has ad and she is complaining with her back hurting. the Dr is sending her to a specialist on the tenth of DEC. they are checking her for kidney infection. i don't think it is her kidneys.i think it is her hip because she has lost alot of weight and i believe setting so much has made her sore . she has no tale bone because she had to have it removed when she was very young.
mom is in the end of stage 6 shes still staying up alot at night the Dr has her on Zambian cr. she talks to people thats not there and she is very agitated most of the time. we was going to put her in a home but my sister and i both just couldn't do it . i keep mom at night and my sister keeps her Friday and Saturday. the only thing is we have cold and snow here and I'm scared mom will get sick .its really hard taking care of mom but i feel like I'm letting her down if i don't at least try . my house is four levels and I'm worried about all the steps .I'm scared mom will fall. i hold her arm going up and down the stires. we have a lady that picks mom up every morning and keeps her till 7 pm then she brings her back to my house so i can work.
i love my mother with all my heart and i will take care of her until i just cant handle it any more i just hope when the time comes for us to put her in a home i hope she knows i did my very best . i do know the time to put her in a home is comming up soon. how long do you think she will be ok with me taking care of her.

thank you
sandy

Answer
Hi Sandy,

There isn't an easy answer. I know how hard this is.

Many caregivers cope quite well with the home caregiving to the stage your mother is at.  Below my signature I've pasted a description of the last two stages of Alzheimer's, just to give you a frame of reference.

As I know you know, things get heavier in terms of care and supervision from here on in so its around the point you are at now that many families start to think  seriously about a care facility. The final straw is often the inevitable incontinence, combined with loss of mobility.

As you are experiencing night time wandering and other sleep disturbances can mean 24 hour duty. Taking care of someone from this point can be physically difficult, gruelling and thankless (i.e.if  the person with AD starts to be unsure who you are, can't recognize your efforts or even really talk to you or understand what you say to them) - and I've seen caregivers almost put themselves in the grave trying to cope.

Only you will be able to answer the question about when things reach the point where you really be open to a care facility. The first and overriding factor has to be safety in the home environment. You can't let guilt or denial - or wishful thinking cloud your judgement, painful as it is.  I know you know this, but she will become more and more wobbly on her feet, the risk of injury from falls will be more and more of a concern, and it may be impossible to provide the environment and level of supervision that may be needed to keep her from dangers. Few people have homes on one level, with all the safety features and special equipment and designs that many care facilities have.

My mother in law completely lost her ability to walk and all continence about two full years before she died. Like you, I had a multi-level house - I could no more have looked after her at home than flown to the moon by flapping my arms. Shortly after she stopped walking, she lost intelligible speech - only garble came out.  The merciful thing was that I'm not convinced at that point she really knew who we were or where she was, so I think she would have been equally lost in any environment - no place or person seemed familiar to her. When she was still able to talk, she would ask to go home, but where she wanted to go was her girlhood home, long, long since sold out of the family. She even forgot she was ever married. It is just heartbreaking.

Be brutally honest with yourself about is your ability to cope. Much as you love or respect the person with Alzheimer's, or promises you made them or yourself when the person was well, circumstances change as the disease progresses. They are not the same person, and their needs are different. You have to give yourself permission to consider options that weren't on the table earlier. If you get sick, what happens - instant crisis.

You have to assess if you are getting overworked and overstressed. There has to be a balance there - and no one wins a prize if a total focus on caregiving for one family member means the neglect of others who need you, the sacrifice of your physical or mental health, damage to your marriage,  or your ability to support yourself.  

The biggest thing your mother needs is you, healthy and in one piece so you can look out for her interests. Your real job is to love her and make sure she's as happy and well looked after as is possible - whether at home or in a care facility. Keep saying to yourself - my job is to love her - because that is the one thing no one else can do like you. Everything else, from bathing, to dressing to feeding - that is all just custodial care that can be done by others.

A good plan of attack is to get your ducks in a row long before you need a care facility. Lots of people don't do this because they just don't want to believe the day will ever come. The thing with AD is that the situation can change quickly and unpredictably, depending on how the disease progresses, so you need to be ready for almost anything (i.e. plan for worst case). You need to do your homework and find out what all the options are locally, and then get your mother's names on whatever waiting lists there might be (good places often have surprisingly long lists). I felt very guilty about putting my mother in law on a list early in the illness, but we were later very glad we had done that, as just when she got to the point where we were starting to get desperate, a spot came up for her.

Don't wait until you are in crisis (whether because you are breaking down from the caregiving, or she gets to the point where she needs more than you can provide in your home) - your choices may be limited at that point, and everyone will be upset (i.e. you might have to take what you can get rather than what you really want or think is best).

I really applaud you. You are doing your very best, and you are looking ahead and asking all the right questions. Your mother is so lucky she has you and your sister. Hang in.

Mary G. (see below for the description of the last two stages)

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