Refusing care

JuMoore

My mom lives with me, I’m 62 and she’s 84, I think she has dementia but I can’t get her to leave the house. She refuses to see a doctor stating there’s nothing wrong, says she’s dying and there’s nothing to be done. She’s been refusing solid food for many months only drinking ensure for sustenance and smoking. She really won’t communicate with me spending years relegated to her bedroom. If she wants anything she’ll write a note and leave it in a strange place hoping I’ll ‘notice’ it even though she walks right past me. We don’t have conversations anymore. She’s so negative and hateful I just can’t engage with her anymore. She’s using a wheeled walker but mobility is becoming more difficult for her. I need help to have home modified but not sure where to turn. In addition we’re in a tiny town in SC and getting anyone to show up to do anything is next to impossible. I’m really struggling not just with her but with my own mental and physical health (major depressive disorder and anxiety). For the past year I was suffering with extreme exhaustion, fatigue, and weakness to find out that a medication I was prescribed was the cause. Coming off of that has made the world of difference but my mind is spinning and I don’t know what to do. I wanted to take her to urgent care or call an ambulance last week. I have power of attorney but she gets so angry and seems quite lucid when she states no treatment. I know she’s miserable and is willing herself to die. She’s adamant she wants to die at home and not being force fed or in a home. I’ve known her wishes since I was a child. It’s just me trying my best to care for her. I’ve no support and so-called friends distanced themselves years ago. Do I just respect her wishes?

SusanB-dil

Hi JuMoore - welcome to 'here', but sorry for the reason.

That's a lot to deal with and you sure have your hands full. I know others might have better suggestions, but you can always call the alz line. If mom is declining, refusing to eat, being aggressive, and being that depressed that she is 'just wanting to die', you may be able to call the ambulance regardless, and maybe get a geriatric psych evaluation that way. They may be able to stabilize her better with an evaluation and proper meds.

To be sure - you need to take care of yourself. Is there a therapist, or even a pastor or counselor you can speak with? do call the alz line...

Jill Florence

Don't give up just get help. You would feel terrible if you don't take care of your Mom and the worst happens. Contact an alz agency to get some professional help. You have burn out and there is hope. Good luck.

towhee

Do try to call the alz helpline, 1-800-272-3900. If you cannot get her out of the house at all, you might be able to get medical care in. You could try calling her doctor (if she has one) and explaining the situation. If she has no doctor, and she is losing weight, you might try calling hospice for an assessment. They might send a nurse out, and you would at least be on record as trying to get help. It sounds as if she needs a legal guardian, but that only happens if she is not considered competent in a court hearing. You could also try adult protective services.

As for the home modifications, that depends on what you need done. If it is something relatively minor such a grab bars or a ramp, some church groups have volunteer handyman services and some eagle scouts do ramps as a project. Call your Area Agency on Aging, they might have some help available Area Agencies on Aging | GetCareSC.

harshedbuzz

@towhee

Eagle scouts as a resource for ramps is a tricky thing for a number of reasons.

The purpose of an Eagle Scout Service Project is not just to do good in the community, but also to grow the individual scout in the area of leadership skills. As a former Eagle Scout coordinator for a troop, Eagle Scout Board of Review member and District Eagle publicity chair, I can share that this sort of project is rarely approved. In 10 years as a volunteer, I have never seen a ramp for an individual approved although I have seen them done for churches and in parks.

Most of the people who approve Eagle Projects look for the project to be somewhat novel and related to a scout's interests which is why they are often related to schools, churches, parks and non-profits. My son's project was a display for a small railroad museum where he volunteered; some friends installed flag poles at playing fields and the town municipal building, another built a data base for the town historical society, one built bookcases for his church and another remodeled a room in a shelter for women leaving domestic violence.

These projects typically take a year or more to be approved and completed as scouts generally have to balance the proposal, fundraising, permits and building with school, sports, and jobs.

From the workbook: Choosing a Project Your project must be for any religious institution, any school, or your community. It is important to note, however, that the BSA has defined “your community” to include the “community of the world.” Normally, “your community” would not refer to individuals, although a council or district advancement committee may consider scenarios in which an individual in need can affect a community. It is then a matter of identifying a source representing the “community” who will provide approvals.

Your project must present an opportunity for planning, development, and leadership. For example, if a blood drive is chosen and the blood bank provides a set of “canned” instructions to be implemented with no further planning, the planning effort would not meet the test. You may need to meet with blood bank officials and work out an approach that requires planning, development, and leadership. This might involve developing and carrying out a marketing and logistics plan, reaching a challenging collection goal, or coordinating multiple blood collection events.

An Internet search can reveal hundreds of service project ideas. Your project does not have to be original, but it could be. It might be a construction, conservation, or remodeling project, or it could be the presentation of an event with a worthwhile purpose. Conversations with your unit leader, teachers, your religious leader, or the leaders of various community organizations can also uncover ideas. In any case, be sure the project presents a challenge that requires leadership, but also something that you can do with unskilled helpers, and within a reasonable period of time. There are no required minimum hours for a project. No one may tell you how many hours must be spent on it.

HB

Jo C.

Dear JuMoore; the Alzheimer's Assn. has a 24 Hour Helpline 365 days a year. It can be reached at, (800) 272-3900. If you call, please ask to be transferred to a Care Consultant. There are NO fees for this service. Consultants are highly educated Social Workers who specialize in dementia and family dynamics. They are very supportive, have much information and can often assist us in our problem solving. They are also great support for a place for us to vent our feelings. You can call as often as you need to. They can discuss your situation with you and perhaps give you some options

It would be best if you could get an ambulance transfer to an ER, (not urgent care), with the possibility she may need admission to either an acute hospital if she has an illness needing that level of treatment or for transfer into a Geriatric Psych Unit that manages dementia patients. She will refuse the ambulance, but you can inform them she has dementia and is unable to format her own plan of care and she is no longer eating and has been ill and needs to be seen for her safety. If you have a Power of Attorney all the better; but I suspect there may not be one.

The possibility is, as said, that she is far into dementia and needs to be assessed in a Geriatric Psych Unit. This is NOT a shame; it happens often and did with my own mother. Our Loved Ones (LOs) feel as though they are in a regular hospital room and are assessed on a 24 hour basis and medications to assist with behaviors and needs are started and observed for effectiveness and side effects and are managed by a Geriatric Psychiatrist. The ER MD can assist with this sort of transfer and it will be involuntary due to the fact she refuses care but she is not well and is refusing foods, and behaviors are uncontrolled , etc.

She has been running the show and her brain is broken; she has no ability for competent logic, reasoning or judgment. You cannot be expected to let this ill woman make the decisions for which she is not competent to do so. I know you are fearful of all the fallout; why not contact the Alzheimer's Helpline and see what input suggestions you get.

Let us know how things are going, and I send best wishes your way,

J.