Daughter Has Greater Concern for Caregiver Father

Posted by: Kathy Harmon on 7/8/2010

Dear Kathy,


My parents live in a small town in Colorado.  Mom was diagnosed with Alzheimer's several years ago and dad has cared for her with the love that was so exemplary during their marriage.  We have all had years to adjust as she gradually slipped away, but the situation has recently become more serious.  I live on the east coast and I'm able to visit my parents about every six weeks or so. I have one sister whose husband is in the military.  They're stationed in Germany and they get to Colorado only a couple of times a year.


My parents don't socialize anymore because mom doesn't communicate and becomes anxious when she's in a group setting.  Dad gets a little help from neighbors, but they live in a small community and many of the older folks have moved away to be closer to their kids.  I've asked dad to move in with me but he will have none of it.


When I was home for the holidays, dad told me that mom has been wandering a lot, and he has trouble sleeping because he worries she will leave the house in the middle of the night and die of exposure.  One night he said that he locked them both in the house and then couldn't sleep because he imagined them trapped in a fire.  It is really taking a toll on him.  He's aged terribly this past year, but I know he would be lost without her.  Can you give me any advice?


Becky from Boston


Dear Becky,


Let me suggest a couple of things.  First, you're right: you should be concerned. Caregivers frequently die earlier than the patients they care for.  Undoubtedly, the constant stress, lack of sleep and the difficulty of the work are contributing factors.  Fortunately, you can help your parents in several ways.  There are many reliable companies nationwide that install in-home security systems specifically to keep people safely inside. These systems usually have keypads that require codes for entry and exit and alarms that will signal attempts to leave the home (and fire detection, by the way).  This may be enough for the short term, and it should give your dad some peace of mind, but eventually he may want to consider additional help. 


He could start by getting in-home health care providers for a few hours a week or taking your mom to an adult day care facility a day or two.  These services are available even in small communities.  Caution your father to check for license compliance and references, but I have found these caregivers to be kind, gentle and empathetic and the costs to be extremely reasonable.  He should call his insurance carrier to determine if he has coverage for home health assistance or respite day care. 


If there is a local senior center there are likely other services that may be available at low or no cost through the county.  You might also investigate whether any small residential care homes exist in his community.  You may be surprised to find several within a one-mile radius - even in a small town.  Many of them specialize in memory care, offer a homelike setting, a good caregiver-to-patient ratio, and can provide a very loving environment.  Most welcome the family members and encourage them to visit often and stay as long as they wish. 


Your parents' dwindling socialization has likely left your father feeling progressively more isolated, which may lead to depression.  Encourage him to reach out to the community, find others in similar situations to share his feelings, and accept some assistance.  Your parents are members of a generation who understand devotion to duty at the expense of the individual.  It will be difficult for you to convince him that your mother's quality of life depends on his continued good health. 


Any move, however, will take a good deal of adjustment for both of your parents.  Ask your father if he'd like you to research some options. These facilities are called "group homes," "residential care homes," "adult foster care," "adult family homes," or simply "assisted living communities with memory care."  


You might want to search our senior housing directory in your father's zip code or city/state and check "assisted living" for a sampling of what is available within a 40-mile radius of his home.  You can narrow the search to as little as 10 miles if you wish.  Share with him what you discover and ask if he would like to visit a few on your next visit.  I've known several elderly couples whom have found a small care facility close to the family homestead.  In most cases, the patient became acclimated quickly because the caregiver spouse was able to visit daily.  The caregiver, although initially riddled with conflict and guilt, began to sleep more, worry less and became energized by the daily contacts with facility staff and other caregivers.


How wonderful it must have been to grow up in a loving home with parents who understood the vow, "in sickness and in health."  You clearly understand the problem, are anxious to be of assistance and hopefully have the patience to work your parents through this difficult transition.  Given what I have experienced in the last year with dementia patients, I would ask you to include your mother in all of these discussions.  I have become firmly convinced that there is "someone in there" (Even though the person with Alzheimer's or dementia appears to be unresponsive) and that we should not exclude them from decisions that involve their future.  But I will leave that topic for a future blog debate.

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