Expert: Mary Gordon - 10/1/2008

Question
Dear Mary,
My 81-year-old mother-in-law is in stage 5-6 of Alzheimer's and still lives
alone in her own home. She has caregivers every day for 7 hours, but is alone
otherwise. We live 2000 miles away and there is no other family near her. Her
doctor has been telling us for three years that she needs 24-hour care, but
she will not hear of anyone moving in. We found an excellent dementia-
focused facility in our city and are considering moving her here. Here's the
problem: she still enjoys daily walks near the beach and in her own
neighborhood. We would be moving her to a much more extreme climate,
and though the facility has outdoor gardens, she would not be able to walk
far there and they can't promise that an aide would be able to walk each day
for her usual hour. She also is an accomplished pianist and practices each day
on her own beloved piano, which really could not fit in the facility. My
husband feels we would be taking away from her the two things in life she is
still capable of doing, and that without these she will quickly go downhill.
Though I see this, I am also very worried about her falling, etc., and having
family so far away.
The agency which supplies her caregivers could also find us a live-in
caregiver, but even they caution us that it is very difficult both to find a
qualified person, and also to have that person accepted as any sort of
"authority" within the patient's own home. My mother-in-law is still quite
verbal and can be very hostile to those who try to get her to do anything she
doesn't want to do. She stopped showering months ago and now does so only
under extreme duress. I cannot imagine that she is eating well, though she
claims to cook dinner for herself--?? Any advice you can give will be so
appreciated. Thank you.

Answer
Hi KC, that your mother-in-law  is living alone is a HUGE red flag at this phase, and the fact the doctor is concerned should be like the air raid siren going off in your ear. I'm sure the neighbors who know her are also worried.

I know you are living far from her, and she may well be able to carry on a good social conversation on the phone, but don't be fooled - this is not the same old MIL just a little more fluffy headed and forgetful.  Your husband doubtless has a strong image of his mom the way she was, and really can't get his head around what she has become - and worse...what she is about to become. Alzheimer's is not just a disease of memory. She has global brain damage. Every aspect of her brain is affected - memory, emotional control, ability to reason, judgement. This might look like her, and sound like her, and have some of her old personality and mannerisms, but this not the old her. She is profoundly different, and her needs are profoundly changing. You have to be careful with planning - you can't base decisions on who she used to be. You have to deal with who she is now. It is very hard to process and accept emotionally.  

Her ability to recognize people, places and every day objects will be deteriorating with every passing day  (its called agnosia). Even very familiar things will start to look strange. She can go out for a walk on  her own street and not be able to find her way back. Her neighbor of 10 years may look like a total stranger to her. Someone who is a stranger, may knock on her door and she'll think she should know who he is and let him in. Her understanding of time and numbers are affected, so she won't understand how to handle money, work appliances, her TV, read a clock, understand a calendar, make a call in an emergency.

The fact she has stopped bathing is very telling. She can no longer reason through that she needs to bathe, or recall that she has not. She cannot organize activities and do them in sequence. If you think about bathing, its actually quite complex because it requires many skills and activities that must be done in a very specific order - things you and I take for granted. Knowing what you need - your towel, your soap, shampoo, the face cloth. Putting the plug in the tub, being able to adjust the temperature. Knowing when to shut off the water. Taking off your clothing and stepping in etc. etc. All of that becomes scary and overwhelming, so they avoid it like the plague.  

She will be losing her ability to use language - not just think of words, but even understand what is said to her - which is called aphasia). Even now, I'm willing to bet money, her ability to read and comprehend is almost gone - for example, if you handed her a piece of text, asked her to read it and do what it says (even something like "pick up the red hat and put it on your head"),  I seriously doubt she could do it.

Her fine coordination will be deteriorating, followed by more gross motor control.Its called apraxia - essentially her brain is loosing its ability to tell the muscles what to do. Her sense of balance is deteriorating. Her depth perception is impaired, as well as her reaction time. Apraxia affects daily life - it makes dressing and other every day tasks very difficult, and makes them prone to falls. She is going to lose the ability to play the piano very soon, if she is not already losing it. She won't be able to make sense out of the music notation, and her fingers won't do what she wants them to do.

Worst of all, she will never, ever see what is so obvious to her doctors and others who see her on a daily basis. She has lost the ability to have self insight. She is confused and stressed from coping with her deficits, and she can't begin to absorb the idea of any change. She can't grasp her own situation or recognize her problems. Do not expect her to respond to reason, logic or impassioned argument. Her brain is damaged. She is never going to say, oh yes, I see you are right and I need help. Stop waiting for permission, approval and buy in. I know your husband will desperately want his mother's okay, and will want her to come willingly. Be prepared to accept that she may not be capable of that. Don't let that stop you.

Right now, she is like a five year old living 2000 miles from the adults with the intact brains, and that five year old is insisting she is perfectly fine. If you really think about it, you shouldn't have much angst about it.  She should not be alone, even for a few hours a day. This is a recipe for disaster My advice to you is that you really do need to act now. Don't get her into discussions about it, like saying no is an option, don't negotiate. Don't even get her all stirred up by even talking about it or trying to get her to understand the implications. Go out there, and get her and bring her back with whatever she needs for an extended visit, and move her into whatever care will keep her safe and supervised. Be positive, firm and upbeat and tell her whatever white lies you need to tell her. A nice visit, a holiday, a short stay while her house gets painted - whatever. Pat, sooth, comfort, reassure, distract, divert.  

I know in your heart you are starting to dread a phone call - perhaps she has forgotten how to dress herself properly and has been found lost miles from home half dressed. Or maybe she's let some unscrupulous person into the house and been robbed or worse. Or she's caused a fire because she can't her appliances, that she's sick from eating something bad because she didn't realize it was turned.  That she's overdosed on medication because she can't remember if or when she took it. That she's fallen and had no idea what to do, and had to be rescued by a neighbor.

We lived 15 minutes from my mother in law when she was still in her own apartment, and I could give you real life examples just like the hypothetical ones I made up that actually happened to her and us. It was awful - but we weren't 2000 miles away. You can't manage this situation from afar. You need her where you are, so you can look out for her, so you can really be tuned into her ever changing situation and be realistic about her abilities as things progress - so you can check things out with your own eyes. You are going to get emergency calls and be faced with dropping everything and flying out there.

What works best for you is what is going to be best for her, because she needs you. She's vunerable and she needs protection, supervision, support - 24/7.

Here is a really good article on the experience of dementia. It covers a lot of ground, but really explains what happens in clear terms.
http://www.alzheimer.guelph.org/downloads/12%20pt%20Understanding%20the%20Dement...

Look at this as being as good as it gets right now. Sadly, its downhill from here - I'm not saying that to be depressing. You will particularly notice that losses from here on in will not be subtle and slow as in the very early stages.  My two cents are....make the arrangements, go get her and get her into a secure situation near you, and then get the house and stuff dealt with ASAP, so you don't have the stress of having to think about that at the same time as coping with her illness.

Hope this helps

Mary G.