Dear Barbara, I have seen blogs on dementia where people write about having put their lives on hold to care for their parents and in-laws. How many of us caregivers have lost our marriages or damaged relationships because we have provided this care?
It amazes me how my husband is a different person around his mother, who lives with us and has severe dementia. He says he loves taking care of her but he is changing and not for the better. This is affecting our relationship as well.
I fear that after she is dead I will still have a lot of animosity over his preference to her. It seems like all my needs take the back seat to hers. All of this is exacerbated when my husband’s other two siblings are not helping us. Asking them to watch her so we can have some time together is like pulling teeth.
Caring for my mother-in-law is also physically demanding of my husband and me. Both of our bodies are paying a price for her care.
The first thought is to put her in a nursing facility but it turns out she has too much in her savings to go into a facility. It’s not a giant amount, not enough for hired caregivers, but enough to keep her from qualifying for Medicaid.
I wonder how others do this and recover?” Marlene
I think there are people throughout this country who are living with the same challenges you are faced with and struggling to live each day with good intentions. Unfortunately, there aren’t any pat answers on how to deal with the turmoil of chores and emotions this creates.
Of key importance is to not let yourself and your household become isolated. It is very easy to simply withdraw into the tedium of each day. I have done webinars for The Alzheimer’s Foundation of America (AFA) and their newsletter is quite helpful for families. The National Alzheimer's Association can be helpful. They have local support groups where you can share and get ideas from others in similar situations. There is a 24/7 helpline (1-800-272-3900) to call in a time of crisis or when you are just needing to talk with someone who understands. There are also message boards to “chat” and present particular challenges for others to give their input.
Hospital case managers and social workers know resources that are available in a given community. Private counseling for yourself and/or entire family can alleviate some of the stress and help redirect it.
I have seen Facebook support groups for caregivers and for families with a loved one with dementia. Instagram has groups that post daily with supportive ideas.
The bottom line is that no one can possibly imagine the ongoing challenges of living with and caring for a person with dementia until they find themselves caring for a loved one, or a not so loved one, with this condition. The challenges are as individual and personal as the dynamics of relationships. The support and solutions can be found in those dynamics as well.
Something More... about Dementia and the Toll it Takes on Caregivers
There will be a time when your mother enters the dying process. Dementia doesn't play by the rules when it comes to the signs of approaching death. I encourage you to read my booklet, How Do I Know You? Dementia at the End of Life.