caring for spouse at home

    Bob is trying to care for his wife who refuses to allow outside help.  He is trying to provide 24 hour care by himself and is feeling overwhelmed by the responsibility.  He cannot leave his wife home alone and must take her with him everywhere.  He is feeling trapped and beginning to resent his wife for her unwillingness to accept home care to allow him respite.  He is asking for advice on how to persuade his wife to accept help as well as information about home care and respite services available.

I am having the same problem with my husband.  I would appreciate any advice out there.

Hi Bob:

Whew!!  What a tough situation to find yourself.  My first question would be whether or not you have children who may join you and your wife in a "caring conversation" with regard to your health and wellbeing.  What the body of your issue doesn't state, though,  is whether or not your wife has the cognitive capacity to process information presented.  If she does have the capacity then a child or third party could sit with the two of you and ask questions with regard to your health and wellbeing and try to engage your wife in a care plan for you.

Your wife may say she's unwilling but if a caregiver or visitor is introduced properly your wife may agree.  It's difficult to say not knowing your wife.

I assume that you've been in touch with Lynette McGowan, the caregiver support coordinator, but if not, her program has some respite dollars and Lynette would be able to further counsel you on that caring conversation.  The Volunteers of America also has a program that matches volunteers with care receivers and they can make scheduled visits.

You could also contact a care consultant or manager (those individuals are listed in the member section of this website) to get further assistance.

I am a member of the Family Caregiver committee will try to make the second conversation so that I may connect with all of you.  Donna Brumbaugh, American Elder Advocates

Both Elderhaus in Fort Collins ( http://www.elderhaus.org ; 970-221-0406 ) and Stepping Stones in Loveland ( 970-669-7069) provide excellent day respite care. They have many years of experience working with reluctant family members and can advise you about strategies that have worked to encourage them to participate.  Elderhaus also conducts a weekly (Wednesdays) support group which is open to the public and where family caregivers share their challenges and successes.  There you would be in good company among folks who have had similar difficulties getting spouses (or parents) to accept outside help.Respite is as much a service for the caregiver as it is for the frail spouse.  No one can provide 24/7 care without eventually suffering - physically and emotionally - from the burden of it. The health and well being of the caregiver is as important as the well being of the spouse, but caregivers are often reluctant - for a variety of reasons - to confront their spouses with their own needs for time off. They cannot ask, let alone expect , them to accept outside help for that reason alone.It is only natural for someone to refuse help from a stranger when they see they have all they need from a caring, familiar spouse.  The only reason to do it would be out of concern for the spouse and concern for the consequences if the spouse becomes unable to continue caregiving. I would advise you to be very clear and firm about your own needs.  Any attempt to convince your spouse that it would be in their best interest to accept outside help will probably fall on deaf ears.  I have heard from many caregivers who have simply, without apology or argument, informed their spouses that either they get  respite or they will not be able to continue providing care at home much longer. Some have gone so far as to start actively looking at facilities to reinforce their point.Bonnie ShetlerLicensed Psychologist

Susan  is the primary caregiver for her husband of 46 years.  They moved here from Maryland 9 years ago to retire.   Seven years ago he was diagnosed with Parkinson’s with louibody.  He is currently on L-dopamine.  Two years ago he fell and damaged his rotator cuff which left him with limited ability to do much in the way of physical activity.  He has poor cognition and poor short term memory, and sometimes goes into an imaginary world.  He can no longer read and sleeps a lot.  He has 2 friends who each come 1X/week to visit, and they get some support from the church that he worked in here in CO.  They have a son is Denver who helps when he can, and 2 other children who live too far away to be able to help much.  Susan can leave her husband alone for short periods of time.  She says she is doing fine for now, but is concerned about the future.