Expert: Mary Gordon - 7/26/2009

Question
My mother has been suffering from dementia for about 5 years...my father is her primary caregiver...he is frail in health but is in denial of her disease...lately, she's becoming very difficult...she hides things either accuse a family member of stealing them or claims she has been robbed of everything...she gets real depressed...she also claims my father is having an affair with someone...that he took all her money in the bank...when I try to take her away for a few hours, she wants to go home to check on him..she's on seroquel but I don't think it's working...I have tried to get help for them, but they refuse each time..thank you

Answer
Hi Carrie,
Here is a really terrific article for you to read that will help you understand what your mother is going through.

http://www.alzheimer.guelph.org/downloads/12%20pt%20Understanding%20the%20Dement...

Keep saying to yourself that she can't help any of this. She is doing the best she can with what her damaged brain allows. This is not something she is doing on purpose. This is not something she can stop - her behaviors make perfect sense in her altered reality - her perceptions don't allow her to see the true situation. Her short term memory is shot, her ability to reason, her emotional control - all damaged. It must be desperately stressful. Try to respond to her underlying emotions instead of whatever event she is confused about. It sounds like she needs reassurance. So none of this is personal, and she can't stop if she wanted to. No amount of logic, confrontation, arguing is going to stop it.

Here are 10 fabulous rules for dealing with a person with Alzheimer's, as collected by Dr. Robert Stall.

1. Never argue, instead, agree
2. Never reason, instead, divert
3. Never shame, instead, distract
4. Never lecture, instead, reassure
5. Never say remember, instead, reminisce
6. Never say "I told you", instead, repeat
7. Never say "You can't", instead, "Do what you can"
8. Never command, instead, ask or model
9. Never condescend, instead, encourage and praise
10. Never force, instead, reinforce

She may need her meds changed - quite often adding an antidepressant to the mix can help. It is also possible that the seroquel itself is not the right medication for her. See this article http://www.adrugrecall.com/seroquel/anger.html  It is totally worth discussing with her dementia specialist - you want her to be comfortable and happy, and clearly, when she is agitated, depressed, angry and paranoid, the seroquel is not doing what the doctor may have hoped.

On the caregiver front, it is often extremely difficult for elderly caregivers to ask for help. Your dad may be so overwhelmed, he can't think of ways you can assist - you probably know the feeling. He's so stressed, when you ask him, he can't spare the energy to come up with ideas. He is also probably frightened - he is likely getting to the point where he looks ahead and knows he can't cope indefinitely, between his poor health and her deteriorating condition. Can you imagine how scary that must be - he's facing the end of independent living - or at least the end of being able to look after his own wife alone. Of course he can't admit that - that's like saying he's no longer a competent independent adult. Few of us would want to admit that.

Because they can't admit they need help, and can't tell you what they need, sometimes the best thing to do is come up with options for a caregiver in a face saving way.  Do the homework for him - find out about local services that might help out, do the research, line things up, and then let him know he can get that help by just nodding at you - and then you take it from there. There may be services available, paid or free, from local government, private agencies, his faith community, even neighbors, family and friends might be able to pitch in.  Get the pamphlets or print out the information and leave them at his house for him to browse.  You come up with the ideas and options and don't make him do any of the work. Make it seem like he's doing you a big favor by trying something out. When my mother in law's Alzheimer's started advancing to the point where she couldn't cope with housework, we told her we "knew" she didn't need the help, and we were silly but we worried about her having to get down and clean the floor or the oven, and how about as a favor to us, she try out the housekeeper for a day or two a week? Before you know it, we had someone coming 1/2 days five days a week. She didn't have to admit she couldn't cope - she got to roll her eyes and tell everyone it was all about humoring her silly son and daughter in law.

Things that might take the stress off him - a housekeeper a few days a week to look after the domestic front, run errands, etc. or perhaps  a "sitter" so he can get out and have a little time to himself,  grocery delivery services, yard services, financial planning services. There may even be local "daycare" options to get her out of the house and having a little fun, and give him a break.  He's saved all his life for a rainy day, and that day is here. Spending money on this stuff might seem awful to him, but it certainly beats the costs of full time care for her. He absolutely has to take care of himself, since if he breaks down, no one wins. You might also want to check out medical supply places for things that might make his life safer and easier - like grab bars in the bathroom to make bathing easier. Don't nag - just find out and even arrange things if you need to (i.e. Joe is coming over Saturday to install these great bars I found, and some locks for the cupboard with the poisons in it).

I know you don't want to think about it - but it is also time to research local care options. If his health is poor, if he becomes ill for any reason (and the stress of caregiving certainly isn't doing him much good), you will be immediately in crisis. You have to have a plan, no matter how unthinkable, for her care, both short term and longer term. It would be bad enough if your dad had a crisis - you may need all your time and energy to deal with that, never mind having to worry about what to do with your mom. Depending on your circumstances and her condition, it may not be possible short or longer term to look after your mom in a home situation - so you can be left scrambling.  You end up taking what you can get, rather than what you think is best. So figure out a plan now - it will help reduce YOUR stress going forward.
Go check out what is available where you live, costs, pros and cons of different places. Find out which places offer proper dementia care (i.e. 24/7 supervision in a secure facility).  You should also ask what residents are expected to be able to do (i.e. dress themselves? tell time and find their way around? bathe themselves ? walk? talk?). Those sound like awful questions, but a lot of facilities won't take very impaired dementia patients who might need more assistance or supervision than they can provide. Many facilities and agencies also offer respite care - so if your dad wanted to get away for a weekend to visit friends or relatives, she could be looked after so he doesn't have to worry. Respite care is also a good way to "try out" a placement.

Hope this helps. I know all of this is daunting but you will feel better when you take action. The worst part is the worry when you have no plan for some solutions. Right now is as good as it gets, and sadly, it gets much worse from here on in. She will go down hill and dramatically and heart breakingly so. You need plans for the future - and since the burden will ultimately fall on you and other family, and not on your poor father, make those plans for your own sanity and protection - even if he doesn't think it's necessary, he resists or he won't have anything to do with any of it. At least if you've done the research and figured out what could be done, if something bad happens, you can pull out your plans, blow off the dust and implement them, rather than starting from scratch.

See the doctor as well. I am hoping that you or other family members have medical and financial powers of attorney for both your parents. You will need them. You need to be able to talk to the doctors directly about their situations. It might help your dad a lot. Who knows what he tells the doctor if he is having a very hard time accepting her condition.  He may not let the doctor know how difficult things really are.

Hang in. Don't feel guilty. They are lucky to have you concerned about them, and you are doing the best you can.  

Mary G.
Toronto