Expert: Mary Gordon - 11/6/2009

Question
My father is going to be 82 next May, his wife (my Stepmother) is only 63 and has been dealing with Alzheimer's for at least three years that we know of. Chances are it has been going on longer than we are aware of. She is much younger than most of the people in the adult day-cares and board and cares, so she is now back home with my dad who is having much difficulty taking care of her. I help out as well and we take turns which is devastating for both of us. Recently she has not stopped crying from the minute she wakes up to the minute she goes to sleep. She is so aware that she is sick and she is so scared. She has been upped to 20mg of lexapro and we have to give her xanax just for us to get through the day with her. We do not seem to get any expert answers, caregivers are way to expensive for our budget, and we don't know what medicines to have her on if any at this point. Even the Alzheimer's association in our area is of little help. We have been called to pick her up from her daycare because she upsets the other people there, and we have been called after one hour from putting her into a bed and board to pick her up as it wasn't going to work out. WHAT DO WE DO? My dad is too old to really be able to care for her and I have little or no energy and it takes days for me to get back on track after she leaves my care, only to have her back again as soon as I finally get caught up on some rest. ANY SUGGESTIONS ON MEDICATIONS OR ANYTHING? She is caught between a stage where she knows too much of what is happening so she is terrified all of the time, and yet can do little to care for herself. She cannot be left alone for a moment. she cannot dress herself, she cannot bathe herself. All any of us do at this point is cry, but the only time she stops crying is when she is asleep. WHAT CAN WE DO? WHO CAN HELP? WHAT MEDS SHOULD SHE BE ON? DOES SHE NEED A NEUROLOGIST FOR ANY REASON OR JUST A PSYCHIATRIST? She is in a study which has been of no help either. WE ARE AT A TOTAL LOSS WITH THE HORRIBLE DISEASE. Any answers would be a godsend!
Thanks you,
Sincerely,
deena newell

Answer
Hi Deena, you need the support of a neurologist or psychiatrist who have a specialty in dementias. It sounds like your step mother is really suffering, and that is not only very hard on her, but very wearing and upsetting for all of you who are trying to look after her.

The thing is, the lexapro just isn't working for her at all. Not all medications are going to work for everyone. What works for one person might have no effect at all on another - or even make the person WORSE. It is common to have to try several before you hit on the right medication, or combination of medications. If you haven't tried it yet, I'd give the citalopram a try.

Here is a good article on medications (go the medications heading)

http://www.alz.org/alzheimers_disease_behavioral_symptoms_ad.asp

A good doctor will work with you, and come up with ideas to try and also assist with trying various doses to hit on the right balance. You want her to feel better without being made into a zombie - or so drowsy she's floppy and at risk for falls. Ask for a referral to a specialist or to a memory clinic where they will have some expertise in dealing with this kind of things. You also need some family supports, such as a social worker who specializes in dementia care.

If the situation keeps going, your father will become sick from stress and exhaustion and that helps no one. Even if you do find the right combination of medications, and are able to calm her down, the harsh reality is that she will get worse and worse in terms of the amount of care she requires. I know you know, not only will she need care 24/7 but shortly she won't be able to do much for herself. As she loses her ability to walk and feed herself, and becomes incontinent, her care will gets heavier and heavier with time - it not only requires huge patience and physical endurance and strength, but specialized equipment such as special lifts, beds, baths. If your father is having a challenge now, it isn't going to get better with time.

If you have not already done so, see a lawyer about the medicade and medicare and other insurance rules where you live - and start researching alternatives, even if they seem unappealing on many levels. I know it's terrible to contemplate, but the truth is, you can't be the caregiver and your father is not a young man. You need a plan in place for when it gets to be too much for him (which won't be long from now), or for if he should become ill. If he had even a minor illness, you will be in crisis without a plan you can put into place.

It's not a question of if she will need placement, but when. Hopefully that will not be soon, but you will feel better with some knowledge of what is available, what is possible, and what your step mom and father can qualify for.

Hope this helps a bit. If you want, let me know where you live (what state and closest major town or city) and I will see if I can steer you to more specific resources.

I know this is a nightmare for everyone, and just heart breaking. Hang in.  

Mary G.