suggestions for a caregiver

mac9372

Hi Community! I’ve been the caregiver for my mom for the past two years while my father struggled with his own health issues. My mom rarely got angry with me and always said I brought her great comfort. My dad recently told me that I’ve been causing her great stress and agitation after my visits (she mentions me taking things, blames me for everything, etc) so he suggested I not come by for awhile. The problem is, this is going to happen with this disease and I don’t think it’s healthy or realistic to stay away, he needs the support too. Maybe someone knows a better approach…should we try all meeting  at another location other than their house (restaurant, etc)? Any suggestions are welcome, thank you!

Jo C.

Hello mac and welcome to you.  I am sorry for what is happening; even though we understand why something is happening due to dementia, it can still be hurtful.  Delusions are indeed a challenge and no way can we argue, explain or do anything to quell such rigid false beliefs.  Frankly, I do not think meeting in a different location will be helpful, and as it is, most of our Loved Ones are often more unsettled being in a different setting outside their own home environment.

It is true; the best approach to a person with dementia is to have really good structure and routine to their day.  Routine and structure in an uncluttered environment without too much noise or lots of activity around them are best friends in dementia.  Upsets, too much noise, too much activity, too loud a TV or violent programs, too much input can all be upsetting as well as not having that routine to their days.

Her brain is damaged, she no longer has the same ability to use logic, reason, or judgment.  She is trying to put a framework around matters from what she is unable to process or understand.

You may want to have her checked for a "silent" urinary tract infection. These UTIs are called, "silent," because there will be no physical signs of pain or burning, but there may well be significant changes in behavior to the negative side of the ledger and it can be quite dramatic until the UTI is treated.

Another thing to do, is to have you and your father watch to see if there are any triggers that bring this on. Time of day, refusing to do something like bathe, etc.; or if she is hungry or in pain, or even if she is constipated.   Sometimes our Loved Ones (LOs) will exhibit problematic behavior late in the afternoon or evening; that is called, "Sundowning."

Here is a link from the UK in which they discuss delusions; it is a larger presentation than others I saw

https://www.dementiauk.org/get-support/understanding-changes-in-behaviour/false-beliefs-and-delusions-in-dementia/

If she has a checkup including having an expansive panel of labs done and it comes out negative, then it may be that she needs to see her dementia specialist.  If the delusions are becoming problematic and affecting family as well as causing issues for the patient's quality of life and all lesser measuares have failed to help, there is medication that can assist.

The Alzheimer's Assn. has a 24 Hour Helpline that can be reached at (800) 272-3900.  If you call, ask to be transferred to a Care Consultant.  There are no fees for this service.  Consultants are highly educated Social Workers who specialize in dementia and family dynamics.  They are very supportive of us, they have much information and can often assist us with our problem solving.

My mother became delusion driven and of course me being the one that did the most for her was blamed for all and sundry. That is not at all uncommon. If you are interacting with her; try not to address her false words; instead address the feelings behind her words. By validating her feelings of anger, fear, frustration, etc., you are validating her and stopping a meltdown.  In such validation, we often take blame for something that we had no part in; but we once again, are validating their  feelings.    After having validated, it is important to refocus her onto something else; whether it is going into the kitchen for coffee and a sweet, or a change in conversation, or looking out the window at whatever you tell her you saw out the window (colored bird, squirrrel, etc),or to do a small chore like folding towels; you get the idea.

I send you best wishes and so hope a solution is found.  Let us know how you are doing, we are all here in support of one another and that now includes you too.

J.

towhee

From what you have said you are having a nice social visit with your mom, maybe providing some care, and then when you leave your mom has a meltdown and your father has to deal with it. Dealing with meltdowns is no fun, I am not surprised he is trying to avoid that. It is possible that she is just tired from your visit and can't cope. It is possible that something in what you are doing is setting her off when it did not before. Getting her checked out is a really good idea. It would probably also be a good idea to cut your visits very short for a while.