Expert: Mary Gordon - 8/23/2007

Question
QUESTION: I've brought my mom two hours from her home to live with my husband and I.  She has enough money for me to hire day help while i work.  She is on 100 mg of seroquel.  my problem is coping with her sadness, her intense desire to return to her home, trying to make her understand she can't drive anymore or live alone (she knows the doctor has told her that, she just doesn't think they know what they are talking about).  She is insistent that she can drive home and live there alone without help.  She says she knows she will be lonely, but she just HAS to go home.  She enjoys being with us, but feels she is in the way regardless of how much reassurance we give her.  If she didn't take the Seroquel, she would be very combative and would hit or bite.  I don't know the magic words to say to her to get through that she can never go home and stay along and she can't drive again.  even after the doctors told her.  She cries easily when she thinks of home and it breaks my heart and i try to change the subject.  i gently tell her i want her to stay with me so I'll have a playmate and someone to go to lunch with everyday.  i don't argue with her, and do try to just change the subject.  however, she still has enough smarts about her to know what I'm doing.

ANSWER: Hi Carolyn,

First thing to do is to talk to her doctor about your mother's depression. Seroquel is an antipsychotic - so it helps with agitation, aggression, delusions etc. but it may not help with depression, anxiety and sadness. Very often, people with dementia need an antidepressant like zoloft added to their meds. Just getting through a day must be very stressful for her - particularly if she has enough self awareness to realize her life is becoming a confusing swirl she can't manage. Brain damage itself can trigger depression.

My mother in law used to ask to go home. When you questioned her more closely, where she wanted to go was not her apartment, nor the house she had shared with her husband and raised her son in - but her girlhood home, sold from the family more than 60 years earlier. She wanted to go HOME - to her mother and father, and sisters, and everything safe and warm and familiar - to see places long gone and people long dead. Your mother's request is likely much less about a physical place, than a longing to return to a time in her life where where she felt secure, where her life made sense, and she had purpose, optimism and meaning.

Wanting to go home is a phase that eventually passes as the illness progresses - so this won't last forever. I know how frustrating and difficult it is though - because it triggers so much guilt and grief for the caregiver who can't give the person what they want.

You are doing the right thing by not arguing with her or trying to reason with her - as I'm sure you've found, she will keep the negative emotion long after she's forgotten what the disagreement was about (i.e. she'll get upset, particularly if she senses you are upset, and she'll stay upset even if she can't remember WHY she's feeling unsettled!)

One way to deal with it is to address her underlying emotions - think about what she really wants or needs in terms of what "home" might represent, and try to address that. Perhaps she needs reassurance, sympathy, a comforting hug?

I wouldn't be above white lies to provide a plausible reason she's staying with you - such as a holiday, her home being painted or repaired, recovering from some illness - that way you can avoid saying no to her (i.e. let her think she may go home eventually). Or you can agree with her about going home and come up with an excuse you can't go right now or in coming days. Perhaps its too cold, its too late, the car is broken, you have to wait for some event like your son coming home,  you have some chores to finish (hopefully ones she can help with like folding laundry).  The key is to "agree" with what they want, but by conversation and "steering", get them to do something else without them realizing they are actually being redirected.  You have to "buy" into her reality and shape it, rather than try to confront or reason (she will never see or accept what is obvious to everyone else). I heard of one woman whose husband wanted to go "home" at 2 am, who told him, sure, we'll go, but lets have some ice cream first - and that proved enough of a temporary distraction to divert him off the subject. Anything to agree, defer, redirect.

Have you tried taking her out for a walk or a drive to see if going out and coming back helps?

Would it be worth trying to get her to reminisce about the home she misses, to give her opportunity to express the feelings of loss, fear, and/or insecurity, which she may be feeling. If you have a photo album handy, she could look through it and you can make comments to start the conversation (That looks like Uncle Harold in the backyard. Did he come help dig the garden with Dad? Grandma told me he used to....). Or you could start a conversation about what you liked best about her house and get her reminicing about the decor or what she changed when she first moved there....

I used humour a lot with my mother in law - and I'd try to agree with her and give her what she wanted in wish form. "Mom, I wish I had an airplane, and we could go zooming there right now! - or maybe we could get in my hot air balloon and land on the roof".  She'd often get distracted by me being silly while I agreed with her, and giggle and forget what she was on about in the first place. Much better than having to tell her no, or remind her about some other fact her mind just couldn't retain, like the house had been sold.

One thing that might be useful is to keep an eye out for any common denominators in terms of time of day, events, stressors that seem to trigger her expressing the desire to go home?  Is it near mealtimes (a snack might help). Is it when the environment is noisier than usual? Is it later in the day when shadows are creeping in?  If you see a pattern, you can take steps to lessen or avoid some of the triggers.

Hope this helps - first stop is the doctor to see if he or she can suggest some further meds to help with her mood. Below my signature I've pasted the most commonly used set of "stage" descriptions for Alzheimer's, just for your reference. You describe her as being in Stage 2 - its probably more like Stage 5, at least on the Reisberg scale.

She is a lucky woman to have such a loving daughter, trying so hard to keep her safe and happy.

Mary G.

Stages of Alzheimers

In 1982 Dr. Barry Reisberg published what was to become the best and most widely accepted description of the stages of Alzheimer's disease. Even today, years later, when experts referto a person being in stage 5 or stage 6, they are referring to Dr. Reisberg's scale of seven stages.

Adapted from Reisberg, B., Ferris, S.H., Leon, J.J. & Crook, T. The global deterioration scale for the assessment of primary degenerative dementia. American Journal of Psychiatry, 1982

Level 1

No cognitive decline - (or Normal Adult). No subjective complaints of memory deficit. No memory deficit evident on clinical interviews.

Level 2
Very mild cognitive decline (forgetfulness or normal older adult). Subjective complaints of memory deficit, most frequently in the following area:
(a) forgetting where one has placed familiar objects;
(b) forgetting names on formerly knew well.
No objective evidence of memory deficit on clinical interview. No objective deficits in employment or social situations. Appropriate concern regarding symptoms.

Level 3
Mild cognitive decline (early confusional or Early AD). Earliest clear-cut deficits. Manifestations in more than one of the following areas:
(a) patient may have gotten lost when traveling to an unfamiliar location;
(b) co-workers become aware of patient's relatively low performance;
(c) word and name finding deficit becomes evident to intimates;
(d) patient may read a passage of a book and retain relatively little material;
(e) patient may demonstrate decreased facility in remembering names upon introduction to new people;
(f) patient may have lost or misplaced an object of value;
(g) concentration deficit may be evident on clinical testing.
Objective evidence of memory deficit obtained only
with an intensive interview. Denial begins to become manifest in patient. Mild to moderate anxiety accompanies symptoms. Deficits noticed in demanding employment situations.

Level 4
Moderate cognitive decline (Late Confusional or Mild AD). Clear-cut deficit on careful clinical interview. Deficit manifest in following areas:
(a) decreased knowledge of current and recent events;
(b) may exhibit some deficit in memory of one's personal history;
(c) concentration deficit elicited on serial subtractions;
(d) decreased ability to travel, handle finances, etc.

Frequently no deficit in the following areas:
(a) orientation to time and person;
(b) recognition of familiar persons and faces;
(c) ability to travel to familiar locations.
Inability to perform complex tasks. Denial is dominant defense mechanism. Flattening of affect and withdrawal from challenging situations occur.

Level 5
Moderately severe cognitive decline (Early Dementia or moderate AD). Patient can no longer survive without some assistance. Patient is unable during interview to recall a major relevant aspect of their current lives, e.g., an address or telephone number of many years, the names of close family members (such as grandchildren), the name of the high school or college from which they graduated. Frequently some disorientation to time (date, day of week, season, etc.) or to place. An educated person may have difficulty counting back from 40 by 4s or from 20 by 2s. Persons at this stage retain knowledge of many major facts regarding themselves and others. They invariably know their own names and generally know their spouse's and children's names. They require no assistance with toileting and eating, but may have some difficulty choosing the proper clothing to wear.

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 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   



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

QUESTION: Thank you so very much for your quick response.  The list of stages is such a valuable tool for me.  I can see that she is closer to Stage 5 and will ask her doctor about this on August 29.  I will also ask about Zoloft.  Her doctor took her off of Zoloft when she put her on Seroquel.  She still owns her home and farm.  We are able to visit it around once a month.  She loves going to visit her house.  She will work in the yard while I clean in the house.  We are slowly cleaning out closets and cabinets.  She just wants so bad to stay for a few days by herself or even if I could stay there with her.  A weekend just isn't enough for her.  My problem is I don't have enough annual leave to keep pace with her wishes and my own personal needs.  I've used up so much of it caring for her through two knee replacements and my husband's heart surgery.  I've got some health issues that will have to be addressed sooner or later.  Her care giver would go with her and even spend a night or two, but Mom is resisting that.  I think when she gets to know her care giver better she will be more willing to go with her.  She is a wonderful lady and Mom just loves her to death and is very comfortable around her. Only to Mom she just isn't family.  I have a question you may or may not can answer.  How long is the progression from stage to stage on average?  I know it isn't an exact science, all I'm asking is a "ballpark" estimate.  She had a knee replaced in Jan of '07.  Before that she was still very independant.  After recovery, she still was able to drive 2 hours from my house to her home and stay for several days.  I would call her several times a day.  The only reminder she really needed was to make sure she took her medication.  Then after her second knee surgery June 18 of this year, she changed drastically.  We even had to put her in a veiled bed in rehab because she tried to leave and wouldn't stay in bed.  She is allergic to a lot of medication and couldn't take some of the meds that would have helped.  I do try the tactics you described of diverting her attention, but she is still sharp enough to realize what I'm doing. I can get away with it some, but not often.  And, I am extremely affectionate towards her.  I give her kisses and "kitty" Kisses (nibbles) every night as I tuck her in bed.  During the day I will grab her hand and baby talk her and give her kisses on her hand and then give her "kitty" kisses on her fingers.  (We have a cat that will lick you and then lightly bite you -- where the "kitty" kisses comes from).  I will also hug her and spontaniously give her kisses on top of her head as she sits and watches her soap opera.  I have learned that telling her how much I need her here with me helps, such as who will make the fruit salad and who will iron my jeans.  I did have her interested in painting small figurines, but she is resisting that now.  She was always a perfectionist and she does recognize that she can't do as good a job as she once did, so she has lost interest.  I've tried to get her to sew and knit, but she doesn't care for it anymore.  She never has been a reader and doesn't watch that much T.V.  When her doctor asked her what her hobby was, she pointed to me.  I've rattled enough and taken up enough of your time.  Thanks for listening to me.  It does help to "talk" to someone that has been there.  You're an angel in disguise!

Answer
Hi Carolyn, I'm so sorry I didn't respond promptly. I came away to our summer cottage for the long weekend and must have missed your follow up question - just discovered it today. I apologise!!

If you haven't already bought some books, a really great book that will help you is called The 36 Hour Day, by Mace and Rabin, published by Warner. Its in softcover, inexpensive and the best book out there for caregivers (i.e. if you only buy one, its the one to get).

Regarding your mother's loss of interest in activities - this is actually pretty normal. Part of what happens to them is they lose their understanding of sequences, so any activity that requires them to do a series of things in a particular order becomes too much for them. They also loose fine coordination - later she will lose gross coordination and her sense of balance, but at this stage, her fingers subtly won't do what she wants them to do, which makes knitting and painting a challenge. They start avoiding things that are too stressful (i.e. the life long knitter hangs up her pins out of the blue).

I'm not surprised by what happened after surgery. For whatever reason, general anesthesia really knocks them on their behinds. My mother in law broke a hip prior to diagnosis (dealing with the hip delayed her being able to see the specialist by several months). Before the break, she'd been a bit fluffy headed and forgetful, but nothing really overt was going on. Then she broke her hip. After surgery, she was totally loopy. She didn't know where she was, she (like your mother) kept trying to get up. The hospital actually sent a social worker to talk to us, because they thought we were in denial, and we must be lying that she had been pretty much fine before surgery. She did come back part of the way mentally, but not ever to where she'd been before.

I know this is so tough on you because you want her to be happy and you wish you could give her what she wants - but the equation is different now - after all, she needs you healthy and well and able to look out for her interests, so you have to include your own well being in what you decide. You and I both know that she would NOT want you to sacrifice your health (physical or mental) to look after her, no matter how noble the motives. You need to look after yourself, your marriage and family, your job, and still have some room left for some hobbies and social activities, and no, its not selfish to do so. After all, if you run yourself into the dirt, you can't do anything for her at all, and everyone loses. So, you absolutely must give yourself permission to arrange things in ways that work best for you - and not feel guilty.

Is it possible she might enjoy adult daycare? Some people really love it - it gives them activities and social opportunities outside of what can be provided at home, and the stimulation is good for them. Something to consider, since it is sometimes hard to keep them occupied in a home setting - even a day or two of week might be a good change of scenery. Are there any projects you could put her to work on, such as going through family photos and identifying who is in all of them etc.? You might want to contact the local Alzheimer's Association and any seniors organizations to see what is available where you live.

Its hard to say how fast it will progress. My mother in law was about 7 years in total, from when I first started wondering if there was something going on, to the end stage.  She died from the Alzheimer's itself. Two years after we first noticed she was slipping, she went to an assisted living place, since she lost her understanding of sequences which translated into trouble with bathing, money, telling time and reading a calendar, taking her meds on time etc.  I'd say she was about where your mother is at that point. She lasted in the assisted living place about a year, and then she was too confused to stay there (she needed more help and supervision than they could give). So...early Stage 6 by then. She was two years in a special locked Alzheimer's ward, and then she lost her ability to walk (she went into Stage 7), and had to go to a heavy care nursing ward, where she survived another two years. So, maybe two years to get to end of Stage 4/start of Stage 5, another year to get to end of Stage 5/start of Stage 6, two years in Stage 6, and two years in Stage 7.

The thing with my MIL was, though - she was extremely healthy in every way other than the Alzheimer's, so there were no other illnesses to shorten her life or complicate her dementia. The dementia itself can kill, but it also shortens their lives because because it is so hard to diagnose and treat ailments in a person with advancing dementia. Families often decide that other than comfort measures to keep the person out of pain, its probably better not to put a very confused person  through scary or painful procedures, surgeries or therapies.  Its not helped by the fact that by later dementia, most people can't understand words or answer questions sensibly so they can't cooperate or participate - i.e. things like physiotherapy are a lost cause.
 
Many people tell me they seem to notice it going faster when they get to the stage your mother is at. Its probably because we all have so much excess capacity in our nervous systems. The process of brain damage in your mother doubtless began slowly and incideously years ago - and only when the last neurons for a particular ability wink out do we notice their deficit - and if its for some little thing, its no biggie. But after this point, you may notice changes more since she will be losing more major abilities (i.e. the losses will be more shocking to you, more dramatic in their nature, and have more impact in daily life).

Thinking of you. Your mom is so lucky to have you. Its totally crummy - no one deserves this.

Mary G.