Expert: Mary Gordon - 12/1/2006

Question
Thank-you for your prompt and meaningful reply, Mary. I have two more questions and apologize if these have already been answered, but haven't had a chance to search through the other questions:

1. Do you have some advice for selecting a nursing home for my father? Since emailing you, he has regressed very quickly and as you suggested we want to be ready with the best possible care for him.

2. Is it normal to have an Alzheimer's patient regress so quickly? My father has gone from recognizing us as family members and responding to us, to completely living in his own world within a period of about one month.

Thanking you in advance.
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The text above is a follow-up to ...

-----Question-----
My 79 year old father was diagnosed with Alzheimer's three years ago. He has just regressed from a stage of the disease where he was very quiet to the point where he is very confused, asks a lot of questions and follows my mother around the house relentlessly. There are two issues I need to deal with and would like your opinion:

1. He is not sleeping through the night. He may sleep an hour at a time, but is then up wandering around the house looking for his shoes and trying to go outside in the middle of the night. My mother has tried to keep him from taking afternoon naps, and has tried to give him exercise. (very difficult in the middle of a snow storm) However, he can go 2 to 3 nights in a row where he only naps for an hour at a time.

2. My mother refuses to let go of the care giving. My brother (who also lives with them) and I have offered to help. I called home care services (I live in Canada) today and they are sending a representative out in the next couple of weeks to assess how they can help. My concern is that she may refuse the help of these people. I have told her that these people are not going to make us put my dad in a nursing home as that is her concern. Any suggestions?

Thank-you
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Hi Shirley, I'm a Canadian as well - I live in Toronto.

What you are facing will require a multi-pronged attack!

I hope your father's doctor is either a specialist in dementias or is a family doctor who also sees your mother and is sympathetic to the whole situation. A lot of what you are seeing is agitation behaviour, produced by anxiety (which isn't surprising, given that if your mother goes out of the room, he can't tell if she's coming back in 2 minutes or 2 days). Having a damaged short term memory makes every day life pretty scary.  Sleeplessness seems to be a by-product of brain injury, so its is also a common behaviour of Alzheimer's patients as the disease progresses

There are medications that can help with both how he's feeling and how he behaves - by that I don't mean turn into him into a zombie, but just reduce his anxiety, and improve his sleep patterns - which in turn will make things better for your mother. You may have to try a couple of different drugs at various doses to see what works.   As always, medication can be a two edged sword because of interactions with other medications, and because of side effects. To avoid the hangover effect of sedatives, start with a smaller dose and gradually increase it  (with medical advice) until you find the point where you see the maximum effectiveness. I can't recommend a specific medication - you need to work out with the doctor what the best one would be that would be safe for your father and have the right effect, given any other health problems he may have, or other medications he may be on.The doctor has to know what is going on, and the impact it has on everyone.

As your mother is attempting to do with limiting daytime naps, one strategy is to try and make sure your father has enough activity and exercise during the day so he will be tired at night. Limit caffeinated drinks, and try to keep him moving around (vs. sitting in front of the tube). Your mother may want to consider trying a daytime program for him (i.e. what they call "adult" day care). When the worker comes to visit you, ask about what is available. Daycare programs for early dementia patients have a lot of benefits for everyone - your father will have social contacts and access to activities and stimulation outside the home environment, he will be up and moving around and your mom will get a little time to herself to get things done, or just rest! Even a couple of days a week might make a world of difference for her.

Regarding the night time stuff, after you've talked to the doc and the worker about the problem,  make sure your dad uses the bathroom just before bed, so he will be less likely to be wakened by a full bladder.  To keep him safe, and to avoid his being alarmed on waking, keep a night night on in the bedroom, in the bathroom and in other rooms in the house so he won't wake up to total darkness (which he may find disorienting and upsetting) - keeping in mind his internal rhythms are all out of whack and he no longer really understands day and night - When my mother in law was in early AD, she spent some time in assisted living, and ended up in the boiler room of the facility at 3 AM, where she was found by a janitor. She just couldn't understand where everyone was and why it was dark. Even after we talked to her several times about it (she was very upset and recalled the emotion), we couldn't get through to her that it had been NIGHT.  

Make sure doors and windows are locked (with some kind of lock he can't open so escape and wandering outside is not a possibility. Also make sure dangerous areas such as stairways are protected with gates, or other barriers.  
If she finds him up, be as inventive as possible, calm and quiet and if possible soothe him back to bed (i.e. she doesn't want to do anything that might make him more agitated)..

As I know you know, it is especially important that your mom get sufficient rest and sleep so she stays healthy and can cope with all the demands and frustrations of being a caregiver!! Many families find that they need help at night. If other strategies don't work, you might want to think about hiring someone to sit with your dad (i.e. a practical nurse) so your mom can get some sleep.

You probably know that caregivers like your mother often the ones who have the hardest time admitting to themselves that they really CAN'T do it all alone.  They have never needed to ask for help, so they may not even know how to ask, or how to let others help them - and they may not be able to recognize their own limits. The strong, capable ones just shoulder that load independently because they assume they can just like always, ....and it gets heavier and heavier and heavier....and then snap - ! - which is what I'm sure you fear.  (Sort of that awful feeling you get watching a piece of material in one of those industrial load testing machines, isn't it, except that it's someone you love).

You don't mention where you live, but here in Toronto, our family was very much helped by a geriatric social worker associated with a dementia clinic at one of the major hospitals.  She was a fountain of information about respite care, home care options, and other resources. She also did home visits to assess people's ability to cope. Sounds like you have something similar lined up. You might want to call the worker directly after the visit to get the straight skinny from her (i.e. she may censor what she says in front of you mom).

The local Alzheimer's associations can be a great source of information on community resources, as can seniors organizations. The directors of care for any seniors residences may be worth calling also - if there are resources out there for families, they will likely know about them.

If your mother is a church goer, you might want to call her pastor or rabbi and ask them for help as well (if for no other reason than to enlist their help). You never know what her local congregation might be able to do for her or have available.  Even someone to sit with your dad for a few hours so she can go shopping or get her hair done would be a help. Put the word out to the neighbours as well and family friends.

Other things that can help even with your brother in the house - grocery services, cleaning services, yard services - anything to take some of the domestic load off your mother so she isn't overwhelmed while she cares for your dad. Does your mom have someone to help with financial stuff, do her accounts and her taxes etc.?  A standing arrangement with a local cab company can be helpful (i.e. you arrange with them to have the tab sent to you and your mom can use them whenever she wants to take your dad to appointments etc.).

My personal observation is that older people will often put frugality before practicality and put themselves through a lot of unnecessary stress before they will spend money on things that make their life easier.

You and your brother might want to go to a local medical supply place or hardware store and buy and install useful items for your mother - grab bars for the bath, special locks for the doors to prevent wandering, cupboard locks to keep your dad away from harmful items. Watch what is going on - she may not realize that there are products out there that might make her life easier as a caregiver. If she is not a complainer, you may not even realize that certain things are hard for her - so you have to keep your eyes open for ideas.

There is a Canadian mail order company that specializes in adaptive clothing for the elderly and disabled. Sounds silly, but they had some great stuff that solved many problems we had with my mother in law and getting her dressed and undressed.
http://silverts.com/index.cfm

You may have to do the leg work for your mom - you might have to invest a few hours making phone calls to find out whats available so you can tell her about things that seem like good ideas. Don't ask her how you can help - if she's stressed, she may not be thinking straight, and asking for help seems like more WORK! You may also have to take the bull by the horns and just arrange something and then present it to her in a face saving way - i.e. tell her you know she is doing just fine and maybe its silly, but you worry, so as a personal favour to you, you'd like her to accept XYZ as a gift (i.e. you hire a housekeeper to come in one day a week to watch your dad so she can go out shopping, visit friends or get her hair done). Or you might present the option as something you stumbled across that seems really interesting and useful, and here is a brochure - and maybe she can check it out (and then leave her the literature and let her consider it).

To tell when things are getting bad, you and your brother may also have to play detective and ask a lot of questions.  Does she ever have time to herself? Is she still able to participate in her interests/hobbies or see her friends? (Getting housebound and isolated is a real danger). How does she manage him in the bath? Does he need help eating? If she needs to run errands or go to appointments, can she leave him alone? If she has to take him with her, is he manageable? Does he have catastrophic reactions (i.e. stress related meltdowns, not dissimilar to tantrums? You will also have to watch for other signs - is the house looking neglected? Is your mother taking care of herself?

You might also have to do some longer term planning for her - if there are good care facilities in her areas, find out about waiting lists - even if she is adament about never placing him. Do the homework anyway - you need a plan B.  If the lists are long, put his name on them as insurance. She may not think she needs them now, but as you know, things with AD can change quickly, so you can't wait until a crisis happens to check out the options. What would happen if she became ill? Quite often things reach the breaking point when the person starts to physically act out (not all do, but he may), or when urinary and fecal incontinence set in. If you don't do some homework, you end up having to take what you can get, rather than having good choices.  Line up the plan before you think you need to.

So, not sure if I've said anything helpful - but as always, take away the useful ideas and leave the rest.

Mary G.
Toronto


Answer
Hi Shirley
Sorry I didn't respond promptly. My silly spam filter suddenly regressed and starting classing all my all experts mail as junk!!
You asked about choosing a nursing home. I would look for a place with a dementia specialty, preferably one that offers graduated care - you want a place that can look after him appropriately no matter what comes next.  You don't want the trauma of getting him placed and settled in, only to have them tell you he has to go because they can't cope with incontinence or wandering, or behavioral issues. Call your local Alzheimer's support organization and talk to some people there about local options. The worker who was coming to see your family should be able to steer you to resources.  I don't know where you live - in Ontario, placements in not for profit places go though community care access. Here are links to the centers in Ontario
http://www.scarbccac.org/Community%20Resources%20and%20Links/Community%20Care%20
Get a list of local places and call their directors of care to have some tours. Ask lots of questions. Find out what kind of programs they offer to keep Alzheimer's patients stimulated and moving around. What in-house services do they offer? What kinds of doctors make "house-calls" to the facility (i.e. do they have podiatrists, dentists, GPs etc. who make routine visits, or does the family have to take the person out to all appointments). Do they offer escort services to take the person out to appointments if family can't come? Do they have good security systems in place to prevent wandering. Do people there seem happy, clean, well cared for?

I know its hard, but try to think about the place in terms of who your dad is now, rather than who he was in the past. What I mean by that is that he may no longer care if he has a private room, or if the place is attractive or an art program. He may no longer need some amenities that might have been important to him in the past, like daily newspapers, access to a smoking room, even a TV to watch.  It will be important that he is conveniently located for family involvement. When you go there for a tour, try to talk to some visitors to see how they feel about how their loved ones are treated.

You also asked about regression rates. Its unpredictable. Many people with AD can have more than one cause of dementia happening at once. They may have small strokes on top of  Alzheimer's, or Parkinson's and other health issues that compound their confusion. Certainly with my mother in law, we often saw some big jumps, followed by longer periods of slower deterioration. Just to give you an example, her ability to speak evaporated suddenly over a two week period. After that point, mostly garble syllables  with very occasional words or phrases that made sense. I think they reach points where every neuron they lose seems to result in major changes. Its as though they had some redundancy in their brains, and once that is gone, each connection that goes takes with it the last pathway that was keeping a skill intact.

I am so sorry you are going through this. I hope the worker was able to give you some good advice and steer you through the process of finding the right fit for your father and your family.

M