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 Advice for my Mom 
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Joined: Tue Nov 18, 2008 9:30 pm
Posts: 3
Post Advice for my Mom
My mom has been full time caregiver for my Dad who has LBD for the past six years. Increasingly her nights are becoming more difficult so she is often deprived of a restful night's sleep. I got a distraught phone call from her this morning and I just didn't have an answer for her.
Last night my father gave her a very difficult time because he wanted sex. ( Dad is 79 and Mom is 78.) He is constantly accusing her of having an affair and is convinced that she is hiding a man in the apartment. He got out of bed and began searching in the closets and behind the doors to find this man. The search went on for quite a while until he finally settled down and went back to bed. My mother explained that he is unable to have sex and that she is very tired and does not have the energy or desire to have sex. She is very concerned that this well be another reoccuring behavioral issue that she will have to deal with. Anyone have any advice or suggestions I can give to Mom?


Sun May 27, 2012 8:36 pm

Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Advice for my Mom
Not being able to sleep at night is disastrous for the caregiver, whatever the reason. A sleep-deprived zombie trying to care for a dementia-driven loved one is a setup for a very, very sad outcome. It is often the final-straw element that necessitates placement of the loved one.

So that is the part of this problem I'd advice Mom to tackle first. Dad's doctor should be told of exactly what is going on. Some drug therapy may be very helpful. In our case it was seroquel that finally allowed Coy and therefore me to sleep through the night and for me to be able to keep him home.

While trying the doctor's suggestions (and it may take more than one) can someone come in at night and give Mom some respite? For example, do you live close enough so that you can take an afternoon nap and then come over and sit up listening for Dad getting up, while Mom sleeps in a guest room or at your house? I only suggest this as a temporary measure, while something medical is being worked out. But I cannot emphasize enough how important a good night's sleep is.

The wanting sex when you can't perform is, to me, similar to wanting to drive or ski or manage the stock portfolio. These are all sad losses -- all things that were possible in the past but are not possible now. I reassure my husband how good he was at the things he can't do anymore, and tell him how thankful I am that he could do them so well for so long.

The accusations of infidelity are common -- maybe it will help your mother a little to know that -- and I think very hard to deal with. Often it is best just to go along with a delusion and let it pass, but I can't imagine going along with that particular delusion. I have not had to deal with it. I can imagine acknowledging the hurt in the delusion. "Oh honey, that must feel so awful to think that I would be with another man. I wouldn't do that ever, no matter what, and I am so sorry that something is making you suspicious. If it will help you to look around the house and assure yourself no one is here, I will turn the lights on for you, and wait in the living room until you are done." But as I say, I have not had to test that approach! Maybe there is caregiver spouse here who can give us first-had experience.

First and foremost, Dad's doctor should know exactly what is going on. (Does he have a good dementia specialist, very familiar with LBD?) And Mom needs some restful sleep to cope with all this.

Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012

Sun May 27, 2012 11:02 pm

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Advice for my Mom
Yes, by all means do as Jeanne suggests and discuss this with the neurologist.

Delusions about infidelity are very hard to treat. Your family may have to give Seroquel, an atypical antipsychotic, to your father to see if that helps. It may be necessary to place your father in a care facility for his own safety.

Rational discussion with someone who is delusional is not possible. See if the local Alzheimer's Association chapter teaches a course in dealing with dementia-related behavior.

Have weapons been removed from the household? Does your mother have a safety plan in case your father becomes physically aggressive towards her?

Thu May 31, 2012 3:14 pm

Joined: Tue Nov 18, 2008 9:30 pm
Posts: 3
Post Re: Advice for my Mom
Thanks Robin and Jeanne for your response. Dad has a neurologist who is familar with LBD. I usually go to the neurologist with my parents when Dad has an appointment. On several visits I have mentioned my concern about the toll caring for my Dad has taken on Mom but I sometimes feel the Doctor is just there to treat the symptoms of LBD and offers little advice for helping the family to cope with the illness. i am trying to convince Mom to let me hire someone to spend a few overnights with my Dad and she could come to sleep at my house but she won't hear of it.

There are no weapons in the apartment and she lives in Senior citizens housing so she has access to emergency help if needed. At this point it looks like we may have to move Dad to a nursing care facility to let my Mom get some rest.

Thu May 31, 2012 7:29 pm

Joined: Sun Jun 24, 2007 5:35 pm
Posts: 349
Post Re: Advice for my Mom
Paula, I agree with Jeanne's advice and encourage you to be proactive in getting your mom to work with you to contact the doctor asap via phone call, email, or fax---versus waiting for the next appointment.
A good doctor should respond in a situation like this and he/she needs to be responsive and alert to the caregiver needs because they so directly affect the patient.

You sound like such a loving and supportive daughter. I am sure your mom appreciates you.

Take care,

Pat Snyder, husband John, dx LBD 2007
Author of [i]Treasures in the Darkness: Extending Early Stage of LBD...[i][/i] [url][/url]

Thu May 31, 2012 8:45 pm
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