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I'm looking for help trying to negotiate how to care for my mother. She has been alone in her house for the past year and a half after my father was placed in a nursing home. He was housebound for years and very demanding which has left my mom in poor shape now that she is alone. She’s depressed about the changes in her life and the difficulties she endured. She has poor short term memory and isn't interesting in doing anything. We (my brother and I) brought in daytime aids to help make sure she takes her meds, eats, showers, take her shopping or drive her anywhere she wants to go, keep her company, and to keep an eye on her. She is reacting poorly to us trying to help since she is absolutely sure she is self-sufficient but she is far from it.
My question is what kind of support or advice is available to help guide my brother and I making decisions to care for her? We are struggling with knowing where the line is. We want to honor her desire to stay in her home and direct her life, but she isn’t able to make rational decisions in her best interest. We’ve asked her to move in with one of us, talked about assisted living options (she’s terrified of this option) or full time aides.
I’d really appreciate any direction you can offer
@j143088u wrote:I'm looking for help trying to negotiate how to care for my mother. She has been alone in her house for the past year and a half after my father was placed in a nursing home. He was housebound for years and very demanding which has left my mom in poor shape now that she is alone. She’s depressed about the changes in her life and the difficulties she endured. She has poor short term memory and isn't interesting in doing anything. We (my brother and I) brought in daytime aids to help make sure she takes her meds, eats, showers, take her shopping or drive her anywhere she wants to go, keep her company, and to keep an eye on her. She is reacting poorly to us trying to help since she is absolutely sure she is self-sufficient but she is far from it.
My question is what kind of support or advice is available to help guide my brother and I making decisions to care for her? We are struggling with knowing where the line is. We want to honor her desire to stay in her home and direct her life, but she isn’t able to make rational decisions in her best interest. We’ve asked her to move in with one of us, talked about assisted living options (she’s terrified of this option) or full time aides.
I’d really appreciate any direction you can offer
Hi there.
There's a lot of wisdom on this list and i hope i can offer some. I have been a caregiver, will be one again, and used to work as a social worker in a variety of settings with caregivers like yourself. As a hospice worker, in hospitals, and as a geriatric care manager. i have a few thoughts. As they say in AA, take what you like and leave the rest.
First, how awesome that you and your brother are working as a team for your mom (and your dad, too.) I can't tell you how often there are terrible, hurtful dynamics where one family member gets the brunt and every other relative runs screaming away from the responsibility. Bravo!
Secondly, I'm thinking you've already consulted with a financial advisor or an elder law attorney about your parents' assets, since your father is in a nursing home already. But if you haven't, it might be a good idea so you know what you're working with for her future, and their's. Assisted living is so expensive and rarely covered by Medicaid. You may have enough assets to work with and if so, alleluia for that.
As for guidance, one option is to begin working with a geriatric care manager. The web site to locate these folks near your parents is here: http://www.aginglifecare.org/. They used to be called geriatric care managers, but whatever they're called, they are usually social workers but sometimes nurses who are deeply experienced in helping older people and their families figure out a way to meet the demands of aging with dignity and as much choice as possible, even in the face of dementia. When i did this work, we would engage with whomever was enlisting our help, and agree ahead of time about how much involvement was helpful, in large part because the service is usually over $100/ hour. Care managers can take her to the doctor and report to you. Assess how her aides are fitting in with her and hire/fire them if you like. Also, advise you and your brother about what might work to engage your mother. Most importantly, engage directly with your mother, and perhaps become like a new friend. I can remember sitting on a porch, talking through a door for many visits to a person with dementia who was also extreely paranoid. Finally she let me in, i established rapport and we were off and running. I know of many stories like that: a care manager ingratiating herself to a reluctant client, and then finally, helping the client and the family go forward with safe plans for care that preserved independence.
If you can't afford this option or don't want to hire a manager, there are certainly things you and your brother can do. In a sense, you are befriending your mother as an adult, with her self being a new person to you: a proud but grieving and fragile person. You can act like a friend. You are poite, you ask how she's doing, and you find things to do together that bring her joy and pleasure. It's coming on Christmas: even if you are not christian, perhaps she'd enjoy driving around with you and your brother, looking at christmas decorations around town. Does she like old movies? I have a friend who used to play Carol Burnett shows on DVD, and her mother, who had no idea who my friend was anymore, would laugh and laugh. Is there a way you can bring pleasure into her life?
Doing fun things will help be a bridge of trust. At this point she knows who you two are, but she is in a somewhat defensive posture: she doesn't want to let go of the bit of independent she still has, given how much has been ripped from her hands and heart. She will dig in about certain things and be more suspicious of your motives, etc. Better to be a bit sneaky about it. Instead of bugging her about buying more nutritious food, for example, buy some frozen dinners, come over and zap one for her, and enjoy visiting while she eats.
Kinda like that.
I don't know what you all are doing now so i'm just speculating. but one thing i've learned about depressed older people is that the tone you use with them can make all the difference. No one likes to be scolded, regardless of age. No one likes to be told what to do. But most people enjoy having a cheerful friend to do things with, to visit with over tea or coffee, to watch a favorite tv program with. And i personally, if i were in her situation, would be greatly relieved to have someone clean the bathroom periodically, and go over difficult tasks like paying bills, and lord help us, do our taxes when the time comes.
I'm just guessing here. can you describe something you and your brother are struggling with as you try to help your mother?
I hope you don't mind my suggestions. If you are willing, please write with a bit more detail, and i myself and others can chime in.
It is wonderful that you are involved. And you will need to be for some time to come. I hope you and your brother can take care of yourself, each other, and your families if you have your own, through this process. It's a humdinger,
All the best and good luck,
Jane
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