Expert: Mary Gordon - 6/25/2008

Question
My father-in-law, 80, has been caring for my mother-in-law for the past several years (5, probably). She is in the last stages of Alzheimer's disease. She can barely walk, can't communicate, must be fed, can't dress or bathe herself, is incontinent. He has some minimal assistance, but almost none on the weekend. Obviously she is getting much worse. He is 80 and he has fallen once, and Mom has fallen twice.

We live about 6 hours away. Other family members are at least that far. Dad won't even discuss putting her in an nursing facility. He seems to think this will go on for years and has made NO plans to put her anywhere. He has told me nursing homes are 'grim'. There is plenty of money for this, but for some reason, he doesn't want to spend it.

My husband is upset about this. We have a child in high school and we are both working, so picking up and heading down there is not easy. Plus, I have a 85 year-old mother who lives in town and is not in the best of health. I think he needs to make plans now-at least get her on a list. He refuses.

How long does this last stage last? When will she become immobile? She sleeps constantly, doesn't communicate and must be assisted with literally everything. I am afraid he is going to have a stroke or something awful will happen to him or her. We've tried to get him some help, but he is resistant. A believe a crisis is coming.

What should we do?  

Answer
Hi Ginny,

I know this is awful to watch. It gets worse from here, although I know you are so stressed right now, its hard to imagine how it could more difficult.

At our house, we did the good cop/bad cop thing. My husband was the one who patted his mother's hand, and cooed and soothed and fluffed and sympathised, and I was the big fat meanie who made the arrangements and told her up straight what was going to happen. This only worked because she was dear quiet little lady, and I think she was a bit scared of me!!! Your father in law  is a different animal entirely.  

You probably know that caregivers like your father in law are 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. If he's always seen himself as the strong, capable one, he'll try to  just shoulder that load independently because he assumes he 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).

From here on in, the care gets heavier and heavier in terms of physical demands. She will lose her ability to walk, and will be like a 90 pound baby - which can be a tough slog to look after adequately even in a facility full of strong young staff, who change shifts every 8 hours, and have all kinds of specialized equipment and facilities to make things easier.   

So, this e-mail will kind of meander - I'll just throw out some thoughts in no particular order, and you can see if there are any useful ideas.

I hate to say it, but you and your hsuband may have to do some leg work for him - you might have to invest a few hours making phone calls to find out whats available so you can tell him about things that seem like good ideas - and you may also have to take the bull by the horns and just arrange something and then present it to him in a face saving way - i.e. tell him you know he is doing just fine and maybe its silly, but you worry, so as a personal favour to you, you'd like him to accept XYZ as a gift (i.e. you hire a housekeeper to come in one day a week to watch your mother in law so he can go out shopping, visit friends or get a hair cut). Or you might present the option as something you stumbled across that seems really interesting and useful, and here is a brochure - and maybe he can check it out (and then leave him the literature and let him consider it).

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, assisted living options, adult day care, and what longer term care facilities were available. She also did home visits to assess people's ability to cope (it is a credit to her tact that this visits to my mother in law were never intrusive and the advantage to us was that we had a third party view of how things were going).  

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 father in law is a member of a faith community, you might want to call his pastor or rabbi and ask them for help as well (if for no other reason than to enlist their help to keep their eye on him and tell you if they see something worrying). You never know what his local congregation might be able to do for him or have available.  Our elderly next door neighbour is picked up for church by a member of her congregation, and she gets frequent visits when she is under the weather by assorted people from her church. Great support.

Enlist the help of family friends and neighbours as well - not just to keep an eye on the situation, but to see if they can talk to your father in law about accepting some assistance. Alzheimers IS one illness that makes you wonder how things could possibly get worse...and then you find out.

Other things that can help - grocery services, cleaning services, yard services - anything to take some of the domestic load off your father so he isn't overwhelmed while he cares for your mother in law. Does he have someone to help with financial stuff, do his accounts and his 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 he can use them whenever he wants to take your mother in law 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.  However, all his life he has been saving for a rainy day, and now it has arrived.  

Your husband might want to go to a local medical supply place or hardware store and buy and install useful items for your father in law - grab bars for the bath, perhaps a specialized bed or a lift to get her from bed to chair. Next time you visit, watch what is going on - he may not realize that there are products out there that might make his life easier as a caregiver. If he is not a complainer, you may not even realize that certain things are hard for him - so you have to keep your eyes open for ideas.

Here in Toronto, there is a 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 - they had "strip" proof clothing with locking zippers for patients with a tendency to disrobe, clothing with velcro and special openings that would be a help if the patient was incontinent or was getting stiff and hard to dress, slippers with zippers that were easy to get on etc. etc.  They even used to sell a "busy apron" for patients with a tendency to worry at their clothing (i.e. it had bits of textured cloth, zips, buttons, laces etc on the front of it, so the patient would pluck and fiddle at the apron rather than their clothes). If there are companies like this where you live, seniors facilities should know about them. (here is an example of a company we used http://silverts.com/).  

To tell when things are getting bad, you may also have to play detective and ask a lot of questions.  Does he ever have time to himself? Is he still able to participate in his interests/hobbies or see his friends? (Getting housebound and isolated is a real danger). Is your mom getting up at night a lot? Does she wander? How does he manage her in the bath? Does she need help eating? How does he get his groceries or other supplies? If he needs to run errands or go to appointments, can he leave her alone? If he has to take her with him, is she manageable? Does she have catastrophic reactions? How is her agitation level - does she sundown? You will also have to watch for other signs - is the house looking neglected? Are there safety issues he is not thinking about ? Is your father in law taking care of himself?

The last thing he needs is to drive himself into the dirt trying to do everything himself - if he gets sick from stress and lack of sleep, everyone is in trouble. Your father should realize that if he falls and hurts himself, or if he gets sick, she WILL end up in a nursing home, even if only temporarily while the situation gets sorted out, and he will not have control over what goes on. He must plan now.

You might also have to do some longer term planning for him - if there are good care facilities in the areas, don't wait for him to be open to the idea - find out about waiting lists. If the lists are long, put her name on them as insurance. He may not think he 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. If you do, 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.

One thought might be to have a sort of intervention for him - call a family conference, and see if you can convince him to consider moving closer to family members who can support the situation. Your husband is doubtless having problems being straight up with his dad and confronting him with any practical reality, particularly if the dad has been an authority figure.

He is  elderly himself, so the thought of organizing a move will be overwhelming. Offer to make all the arrangements for him. Do the legwork, find a suitable place - perhaps a seniors complex with graduated care near family. Tell  him white lies - that is temporary, that its for YOUR peace of mind, that he's doing you a big favor - whatever will work. This can't continue the way it is, particularly given the distance between where he lives and where other family are.

So, not sure if I've said anything helpful - but as always, take away the useful ideas and leave the rest.  All these things seem little, but together they can really help. Don't wait for him to ask - that day may never come.

I'm thinking of you, and I totally understand your frustration, your annoyance and the pressure you feel from worry about him, and worry about your mom. You are caught between a rock and a hard place. So many times with older people, their stubborn desire to stay independent actually makes them reject options that would actually help them KEEP that independence (i.e. refusing to relocate closer to family, or refusing to consider the types of accommodation that might support them on their own for a longer time.  Its not the nursing homes that are grim. Its the diseases that put people into them.

At the end of the day, if he absolutely won't accept help or listen to reason, go ahead and do your own homework and detailed planning - so when the inevitable disaster happens, you will have a plan ready to launch into action. At least that way, you will be semi-prepared and know what you need to do. Make your plan as convenient as possible for whatever family member will need to act as the main support and caregiver (i.e. look at options near you or other family members so there are no long scary drives in the wee hours when something happens at midnight.

Thinking of you. I've been in your shoes.

Mary G.