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My mother who has dementia fell in July 2010 and severely broke her leg. She spent nine weeks in a nursing home where we had to have full-time caretakers to prevent her from putting weight on her leg so that it could heal. She was 88 years old at the time and my father (who also had dementia) was 89.

Since we brought her home she has insisted that she is not “at home” and has begun packing her clothes daily to go back. My parents built the house in 1965 and my sibling and I grew up in the house. There is no logical thinking and no amount of words that can convince her she is at home. Her family doctor gives her Namenda, Aricept, and now Seraquil and Lorazipam. Her anxiety has increased in the past few weeks and what used to be something she would start in late afternoon (Sundowners) she is now beginning this in the morning.

Do you have any advise as to how to handle this situation? Also, we have 2 full-time caregivers who switch out during the week. My siblings and I rotate traveling to her home on the weekends to give the caregivers a break and to check on mother, the house, etc,. Do you think it is important to put for mom to move to an assisted living facility where she would get more stimulation or to stay at home where she knows her surroundings even though she doesn’t think it is her home? Thank you.

Rhea, Jonesboro, GA

Dear Rhea,

I think a move to an assisted living facility makes good sense for your mom.  First, she’s no longer attached to her home of 47 years and the upkeep is undoubtedly onerous.  Second, she would likely benefit from being around other people. Third, the travel and caregiving that you and your siblings are doing would not be sustainable as the dementia progresses.  If all of you plan to continue visiting with her regularly, I’d suggest she move to an assisted living facility that is equidistant for all of you or closest to the person who will visit the most.

I also want to address the increased anxiety you’re beginning to notice earlier in the day than ever before.  I’d also strongly suggest that you have your mom seen and her medication regimen reviewed by a geriatrician. Family doctors are wonderful, but treating older adults is a specialty. Based on experience, a geriatrician might recommend a different combination of medication or different doses.  Also, he/she may be able to make suggestions on when/how to administer the medication to avoid the behavior you’re witnessing.

All the best to you,

Maria

 

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In Need of Respite Care

Dear Maria,

I just signed my husband up for Medicaid in Dec 2013 not knowing what I was getting into. I was looking for respite care as we don’t have the funds to pay someone to come in. When the case manager came out [to our home] I was honest with her. When she asked questions like ‘Does he need help bathing?’ I said I help him. Now they don’t want to or can’t provide respite care. I really need regular relief each week. How do I go about finding this?

Thanks,

Margaret,

Liberal, Kansas

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Dear Margaret,

What you experienced while trying to secure respite care or home help through Medicaid is very common.  These programs are primarily concerned with discerning where there are gaps in needed services so that these can be paid for. Nothing more.  The concept of respite care, or giving a family caregiver a break from caregiving, doesn’t enter into the assessment although it clearly should.

All of this is to say that it is critically important to be prepared for the home evaluation. The real truth is that you’re not just looking for respite care, you’re looking for regular assistance with tasks that are too much for any one person.  If you’re assisting with bathing, my guess is that you’re also assisting with dressing, and fixing meals, and of course, grocery shopping etc. The best thing to do before a home evaluation is to make a list of all the things you do and highlight those that are taking a physical toll. Then ensure the case manager or evaluator understands the full picture.

My strong advice is to contact Medicaid and request another home evaluation so that you can be clear about the help your husband (and you!) need.  You might start with the case manager who came to see you if she has been assigned to you. I have to warn you though that in some states the Medicaid service plan can only be modified once per year unless a change in the patient’s health status occurs before then. Still, it’s worth a shot.

I hope this is helpful to you.

Best,

Maria

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