Expert: Mary Gordon - 7/8/2010

Question
QUESTION: My father-in-law has had alzheimers diagnosed 3 yrs ago..it's been alot worse the past 10 months when he drove hundreds of miles away from his home after dinner at his brothers. At least we could take his car keys away & he didn't kill anyone or himself! His family dr. for months refused to cut off his license,not wanted to be the "bad" guy for several months before this. My father-in-law,beginning last november began losing weight steadily,even tho we tried homemakers & meals on wheels.He's lost 13 lbs,now more the past 2 months. It's also now a safety issue ,as he lives 2 blocks from us & has burnt some frying pan handles in his oven. He never was a cook & he's very stubborn to receive any help whatsoever. We can only afford to have him for dinner once a week,as our budget is very tight & we've been trying to place him in a care facility for months but the centre at our hospital where he is going for 2 days a week for short term asessment never gives us any answers on why they won't put him on a waiting list for a care facility we choose for him,where his sister also resides. This is been going on for over 3 months & they refuse to do what my husband & I want,as if he's has to be deathly ill before putting him in one. Meanwhile he's  starving to death. Does my husband, as power of attorney have no rights in all of this. We are trying to desperately help his father! Thanks for any help.

ANSWER: Hi Katie,

I'm also a Canadian, living in Ontario. You don't mention what province you live in.

All Canadian provinces and territories have enacted some form of legislation regarding physician reporting of patients with medical conditions that may affect driving safety. However, in some jurisdictions reporting is mandatory in others it is discretionary. In Ontario, physician reporting is mandatory. The “physician is obligated to report even if the driving issue has been discussed with the patient, and that person is no longer driving”

The Ontario Highway Traffic Act s. 203 mandates that all physicians “shall report” any person suffering from a medical condition that “may make is dangerous for that person to operate a motor vehicle”. Even if there is no legal obligation, there is an ethical one. Safety trumps everything else, including hurt feelings.

Driving is a priviledge, not a right, and it is predicated on having many intact skills. As you know, your father in law's dementia does not only impact his memory, but his ability to reason, his reaction time, his muscular control, his depth perception, his emotional stability - all the things you need to drive safely. It's not about him getting lost, although that is a concern, since it means his agnosia is advanced - it's more about the safety of everyone else on the road. People with early to mid AD are 8 times more likely to be in accident than similarly aged seniors who are cognitively intact. I'm ranting, because it's beyond irresponsible and immoral for his doctor not to have reported him and had his licence pulled.

My guess from your description is that your father in law is in late Stage 5. I have pasted the most commonly used set of stages below my signature for your reference, so you can get a feel for what is coming shortly as the illness progresses. He really is at the stage when he needs supervision and supports 24/7. Living on his own is becoming actively dangerous. He is like an 18 month old in an adult body - you cannot trust him alone in a house full of appliances, tools, medications, cleansers. He may wander off. He may eat something inappropriate. He may cause a fire or flood. He may let some con man into the house.

The thing is, if your husband is waiting for his father's permission or agreement to take action, he may be waiting forever. You cannot use reason on a person with cognitive impairment. His logic-er is broken. He cannot see what you see. His life has becoming a confusing jumble and he is terrified of change. He is holding on with his fingernails.

Here is a really good article that explains what he is going through. It's worth printing out and reading more than once.
http://www.alzheimer.guelph.org/downloads/12%20pt%20Understanding%20the%20Dement

What has to happen is for your husband to make whatever arrangements are needed for his father's protection. His father is never going to think he needs assistance or be happily cooperative. You just have to steel yourself, and use white lies, humor, distraction, diversion, whatever will work to mollify him. At all costs, stay away from direct confrontations with him. You cannot argue with a person with dementia. You can't make any points or headway, and they just get upset - and stay upset even when they can't remember what they are upset about.   

As you probably know, there are two kinds of powers of attorney. One is for financial matters, and one is for personal care decisions. In most places these two are separate documents. You need both documents to be able to look after your father in law. If your husband has financial power of attorney, he can look after all of his financial affairs - including reembursing himself for costs involved with his father's care (i.e. if you have to buy groceries to give him dinner at your house, etc.)

I would write a letter to whoever the gatekeeper is for the waiting list, expressing your concern. I would be very specific about his deficits and what is going on - talk about every scary thing he is doing. You have to present a case to demonstrate that he is not safe at home, which is entirely true. Give real examples demonstrating his problems - and make it very clear that he needs to be in full time care, and you and your family are not able to provide what he needs. Putting things in writing means you can organize your thoughts and words, so it really has impact. Once it is in writing, they can't ignore the situation.

It is entirely possible that if his social skills are at all intact, the centre at your hospital may not see as many of his deficits as you can. My mother in law shared the same family doctor as my husband and myself. Her social skills were intact far into the illness. She got a little vague and fluffy headed, but she was able to cover really well. She could carry on a great social conversation and was her usual pleasant self, visiting friends and family, yacking on the phone etc. Any time she had a lapse, she'd come up with some cover story - "oh silly me". Our doctor is an extremely perceptive guy, and she had HIM fooled. It wasn't until I took him aside and told him about some specific instances that he started to be suspicious and really look for problems. He saw her frequently and up to the time I spoke to him, he had no idea she couldn't handle money, read a calendar or tell time properly, take her medication properly, cook dinner for herself, clean her apartment, keep up her personal hygiene etc. etc. You know your father in law better than they do.  

I would say the staff at the centre need to know what is going on on the home front so they realize that it is important he be placed - that you, his only caregivers, cannot keep him safe or provide the amount of support and supervision he now needs. Once they are notified, I don't know hgow they could ignore the need - after all, if there is a safety incident after you have explicitly told them, it is on their heads as well if they have not taken some steps to get him into properly supportive housing.

A week or two after sending the letter , if they have not called you, I would call a care conference with whatever staff are involved with his case. Go prepared to discuss your case, and be direct and firm. Be relentlessly clear and specific about what you want and don't accept fog for answers. He cannot remain where he is, he can't live with you, and they need to put him on a high priority list before there is a catastrophe. I'd urge them to find a temporary or respite spot for him if the wait list is long (i.e. he may need a bridge placement until a permanent spot come open).

Hope this helps. I know this is very frustrating and distressing.   

Mary Gordon
Toronto

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 refer to 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 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  



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

QUESTION: Thank you for this informative answer. We live in B.C. The other problems is my husband isn't on good terms with his father,which left me with the full responsibility of caring for him. After his driving incident,I've been non-stop in my concern for him daily. I've arrived at caregiver burnout %26 have other things to deal with with my teenager,we are new grandparents with our other child,plus we've had no support from his family doctor(the one who promises he'll do things & never does),also
no help from his geriatric specialist at a different hosp. The STAT program at VGH here has heard all about John's plight %26 yet they told me yesterday he's having a "compendancy" test tomorrow %26 then eventually they will decide if he needs long term care!!! It's beyond believe. He's lost about 15 lbs since November-isn't that enough to show he can't prepare anything to eat anymore, plus they even took him off his Reminyl saying it's bad for his HBP! No one is helping me,%26 I'm returning to school in the Fall-why is this only my dilemma to solve!!! Thanks, Katie

Answer
Hi Katie, I did not intend to add to your burden. I know how difficult this miserable situation is, particularly if your husband did not get along with his dad earlier. It is very hard to put aside the past, but it has to be done - because the man your husband clashed with in the past is gone in every way that is meaningful. Being rotten and difficult on purpose requires an intact brain. At this point, he may be very frustrating, but you can't put the old labels on him any more, because he has a damaged brain, and his behaviors are no longer anything he can control. Your husband really needs to step up here, as I know you are at the end of your coping rope! Your father in law may not have been easy to get along with in the past, but even if he had been a saint previously, most of what is going on would still be happening due to the Alzheimers. I often get letters from people whose previously lovable relative has become a hurtful misery due to AD. Basically, even though he still looks like himself, and retains some of his old personality, he's a sick, confused old man who needs help. Your husband needs to take some of this on, particularly if he holds the powers of attorney. He doesn't have to spend time with his dad, but he should be working on what needs doing and being an advocate for his father's medical and financial affairs for his best interests - getting your father in law's finances arranged to preserve assets for his future care and to help make them easy to manage, helping to meet with doctors, whatever needs doing. This is an illness that requires a lot of emotional maturity from caregivers - it's not like other illnesses. It requires putting aside past history and dealing with the present reality, and preparing for what's coming.

I know exactly how tough this is - my husband is an only child, and we had three kids born during his mother's decline, and I work full time. The pressure on me was tremendous trying to juggle everything that was going on. I was HUGELY relieved when we finally got her into full time care, as when she was still living alone, despite all kinds of arranged help, it was just one dangerous disaster after another. A good week was one when there wasn't a big emergency - and like you, we only lived a short distance away from her.  

If your husband has power of attorney for medical decisions, you can arrange to take your father in law to a new doctor. Even if you don't get a new doctor now, when he's placed, he is almost certain to get a new doctor (i.e. usually facilities have their own medical staff or visiting doctors). It does help to have a supportive doctor in your corner. As an aside, although it's academic I looked up the law in BC and his doctor did have a legal responsibility to report him.

Here is the details of the current legislation under the Motor Vehicle Act in
BC:

230  (1) This section applies to every legally qualified and registered psychologist, optometrist and medical practitioner who has a patient 16 years of age or older who

(a) in the opinion of the psychologist, optometrist or medical practitioner has a medical condition that makes it dangerous to the patient or to the public for the patient to drive a motor vehicle, and

(b) continues to drive a motor vehicle after being warned of the danger by the psychologist, optometrist or medical practitioner.

(2) Every psychologist, optometrist and medical practitioner referred to in subsection (1) must report to the superintendent the name, address and medical condition of a patient referred to in subsection (1).

(3) No action for damages lies or may be brought against a psychologist, an optometrist or a medical practitioner for making a report under this section, unless the psychologist, optometrist or medical practitioner made the report falsely and maliciously.

I'd still write a letter to his doctors and the STAT program. As mentioned, they may not see what you see, and if he is alone with them, he is certainly not going to report on all the problems in daily living you see and he is oblivious to. You know about all the scary dangerous stuff he does and his deficits, and if asked, he is going to deny all - probably not intentionly. Short and longer term memory deficits mean he really has no clue he's slipping so much, which may be a mercy.  We had to go with my mother in law for all appointments at this stage since not only could she not tell them what was happening, she never remembered anything they said - or worse, misinterpreted it.

I'm somewhat surprised about them taking him off Reminyl. After all, his dementia is an incurable, progressive FATAL illness. It's going to kill him if some other health problem doesn't get him first. I'm surprised they didn't try to come up with some other way of helping the blood pressure problem. Preserving cognitive function would be a higher priority than anything else in my books, unless he is at real risk of strokes. You might want to ask about alternatives, as these drugs CAN slow down the progress of the disease in many people, giving them a better quality of life a bit longer.

The most common medications are cholinesterase inhibitors such as Razadyne® (galantamine, formerly known as Reminyl® and now available as a generic drug), Exelon® (rivastigmine), and Aricept® (donepezil). Another drug, Cognex® (tacrine), was the first approved cholinesterase inhibitor but is rarely prescribed today due to safety concerns. There is also a glutamate regulator called Namenda® (memantine) which works very differently that the prior category of medications. It is often prescribed in combination with the cholinesterase inhibitors (i.e. the person may be on namenda and aricept together.

I think the cavalry is coming - is there any chance your husband or yourself can go with him to this assessment to make sure they get the whole story. I'm crossing my fingers for you - I genuinely think if they know about the fires, the getting lost, the weight loss etc. they are going to find him a residential placement. Hang in there - this is the worst part - the part before he's in supportive housing. You need the final burst of energy to get him into assisted living - hopefully a place with graduated care, as he will continue to go down hill rapidly, and will need a locked dementia ward before long, and from there to a heavy care nursing floor when he becomes incontinent and stops walking.

I'm sorry if I did not seem supportive - I totally get what you are going through, and you have my empathy. I've been in your shoes, and there is nothing tougher. Hold on.

Thinking of you.

Mary