Expert: Mary Daikos - 4/22/2008

Question
QUESTION: my husband is 53 years old and has vascular dementia( front lobe dementia i think. since Jan 08 he has been hospitalized 3 times. the last time march 08; he could not walk, swallow, or remember to eat. During the hospital stay they removed his aricept and his risperdal;thereafter he could walk, swallow etc. i have power of attorney and have since 05 because he created havoc financially. this year diagnosed with front lobe dementia. he is in the nursing home for rehab etc to help strenthing his muscles. at home he forget to eat take his medication use his nebulizer for his emphysema. he would be aggressive one moment and then crying the next. his is on medicare and health insurance from his employment. now he is clamoring to get out. the nursing home advised me if he creates a big uproar he can be discharged since legally they can not keep him there against his will. i can not take care of him; i have to work. prior to march 3; from Jan 22 thru march 2; i had to bath him, put him on depends and remind him to eat and take medication via the phone. what can i do? he is in a structured environment and he is doing good.
what would be my rights as care giver? would i not have any say on his release?

ANSWER: Hi Mary,

Your frustration is coming through loud and clear in your letter.  To answer your question:  yes, you absolutely have some say in his release.  My advice is several fold to you:

1)  If his mood swings continue, contact a geriatric psychiatrist and try to get a geri psych admit to stabilize his medications.

2)  If he is not in a dementia unit in a nursing home, I urge you to find a nursing home that has a dementia unit.  The staff there will be trained in handling people with dementia and your husband will be allowed to flourish there.

3)  If you do decide to take him home, I can not stress enough the importance of finding a dementia specific adult day program.  You will still have to get him dressed in the morning, but you can go to work knowing that he's safe, fed, taking medications, and socializing and involved in activities that can truly contribute to his quality of life.

I wish you all the best, Mary, and if I can be of any further help, please let me know.

Mary

---------- FOLLOW-UP ----------

QUESTION: What happens if I am not able to care for him? What can i do then?
He has demanded to come home and i was able to convince him to stay 2 weeks longer because my #1 child had to have her appendix removed and I was the taxi cab driver for child #2..taking her to and from school...
as a care giver would i not have some options on his care?

ANSWER: Dear Mary,

As his caregiver, you should absolutely have some options on his care - I would call your local Area Agency on Aging for local resources, but your options as I see them (and in no particular order)are:

1)  Take him home and immediately enroll him in an adult day program for the time that you are at work.  Consider hiring help during the evening, morning, and overnight hours if you need relief at those times as well.

2)  Get a geriatric psych placement in a local hospital - make an appointment with a geriatric psychiatrist on your own if you have to.  He may have to be involuntarily admitted, but that's ok.  The medical professionals will be able to work with him to ensure that he's on the best medications to enhance his quality of life, hopefully giving him another chance at his current nursing home.

3) Find a nursing home with a *specialized* dementia unit.  I can not stress this enough.  People that are trained in dealing with the various forms of dementia will be able to handle your husbands demands ... while still working to find the right medications for him.

It's a balancing act, for sure.  I am currently working closely with a woman in much the same situation you are.  Stay strong and do not give up.  You do have the power here.

Mary

---------- FOLLOW-UP ----------

QUESTION: The nursing home tells me they are not a "locked" facility. it is an open one. I am sure the nursing home would like to him as a patient; since his health insurance "has unlimited days in a skilled nursing facility"; yet,they are listening to him when he says he would like to go home home. I understand some people are taken advantage when they are in this situation; but as care giver, seems to me my opinion would count.
what is the difference between a locked facility and an open one? I should have asked at that time but i was upset and could not think straight.

Answer
Hi Mary,

By locked vs. open facility, I presume they're talking about a secure dementia unit (where the door is locked, usually by a keypad) or an typical open unit where anyone is free to go and, therefore, not terribly helpful to people with dementia who may like to wander or, as in the case of your husband, simply get out of there.

My advice to you would be to start looking for a facility that has a secure dementia unit ... you do not have to take your husband home and, if you feel that he is better off in a facility, then that's where he needs to be.  There is a place out there that will take him.  I know this is overwhelming, but you can do this.

Mary