Care Giving for Alzheimer’s and Dementia Family Members and the Church
My father died in 2018 from Alzheimer’s disease. I have been a licensed Pastoral Counselor for ten years and I work with families caring for their loved ones with age related brain diseases. And yet, I was still unprepared for some of the realities of caring for my dad.
Until her passing in 2011 mom cared for dad as they both denied the reality of his decline. Then, my siblings and I realized dad couldn’t live alone so he came to live with me in my home. Two years later we moved him into assisted living, then memory care, and then he died at a hospice facility. These are some things I learned walking through this myself.
Caring for any loved one is an act of selfless sacrifice. Even more so is the caring for a loved one who is struggling with Alzheimer’s disease or Dementia. Scattered throughout all of our communities are families with a loved one that needs daily care. Few of the family caregivers have any formal training to manage the escalating symptoms of debilitating brain diseases.
For those caring for others, try to keep as normal a routine as possible. Force yourself to keep investing in your relationship with the Lord and others. Tend to your body with exercise, healthy eating, rest and community. Honoring your parent does not mean you must give up your life. How your family adapts is a personal decision and comparing your choices to other families’ will not be helpful. Read the suggestions below, ask for what YOU need and then accept an offer of help.
How can we, as the Christian community, come alongside and provide support for these families?
First, caring for an ill loved one, no matter the disease, is isolating and exhausting. We may not know the reason they are absent from our church services, bible studies or home groups. We must notice their absence and reach out. Make a phone call, text a prayer, offer to visit or invite them over, if they can safely leave their loved one. If they decline, ask again at a later date, and again.
It is exhausting to care for someone who repeats the same question or tells the same story over and over. Or, who accuses their care giver of saying, doing or taking things they didn’t say, do or take. Don’t take it personally. There will be a day when the ill person no longer recognizes their closest relative. That is a hard blow for someone who has lovingly cared for them. Emotional exhaustion is isolating. Come alongside without judgement and offer a coffee date, a walk, a drive, flowers or card from their bible study group.
Second, ask what they need such as respite care, (many facilities offer respite care for a day or longer), driving help to appointments, funds for adaptive devices, help making phone calls or laundry. Drop by with information about local stores or rental options for adaptive equipment and visiting home care. In Cowlitz County, Washington there’s a group that will install adaptive equipment for free (http://www.cwcf.org/ministries/hard-hats/). Find out if that is available in your area.
Offer to stay with the relative while the caregiver takes care of their own needs such as shopping, appointments, church, visits other family, takes a couple break for a rare night away, etc.
Third, offer your services. Are you an insurance agent? Can you help sort out Supplemental Medicare Insurance policies? Can you clean? Sorting, packing and cleaning the loved one’s home may be necessary so that it can be sold or rented. A real estate agent may be needed to sell the aging relative’s home. An estate attorney can help sort out any issues with the loved ones will or trust.
Can you check out other options for care for the ill relative? Go visit your local care facilities. Find out what they offer, pick up brochures, get a price list. Are you an accountant or banker? There are lots of complications when a loved one is incompetent to handle their own finances. Getting plans in place, while they can still sign documents coherently, to take care of their financial needs is very important but feels sticky. Reassurance that it is essential and important can help the caregiver shake off some of the guilt of using someone else’s money, as necessary as it is. Research the Veterans Administration program for help paying for assisted living for the veteran and their spouse, care facilities usually have information about that program.
Fourth, don’t give up reaching out. The needs of someone with a debilitating brain disease change often. The care needed intensifies and is not predictable. What they don’t need now they may need next month.
The Bible tells us not to give up meeting together, to bear one another’s burdens, to pray for each other and to love unconditionally. Ask the Lord to show you what that means, whether you are caregiving or supporting someone who is.
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