“9 Strategies to Help a Parent Who Refuses Care”

This is a terrific article offering nine strategies for helping a parent who refuses care.

Robin

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www.care.com/c/stories/5583/9-strategies-to-help-a-parent-who-refuses-car/

9 Strategies to Help a Parent Who Refuses Care
Posted by Elizabeth Pope
Care.com

What can you do when your mom or dad won’t accept needed assistance?

Your mother resists in-home helpers, insisting you can wait on her. Your frail father won’t stop driving. Your aunt denies the need for a personal care aide, in spite of her unwashed hair and soiled clothes. Your grandmother refuses to move to an assisted living facility “because it’s full of old people.”

Sound familiar? Nothing is harder for a family caregiver than an elder loved one who refuses needed help. “This is one of the most common and difficult caregiving challenges that adult kids face,” says Donna Cohen, Ph.D. a clinical psychologist and author of “The Loss of Self: A Family Resource for the Care of Alzheimer’s Disease and Related Disorders.”

Before pushing your mother too hard to accept help, try to understand her fears about aging, says Cohen: “Many older people see themselves as proud survivors. They think ‘I’ve been through good times and bad, so I’ll be fine on my own.’ Plus, they don’t believe their children understand the physical and emotional toll of age-related declines.”

A senior in the early stages of cognitive impairment may be the most difficult to deal with. “Your angry father or agitated mother is aware of this miserable change in their brain they don’t quite understand,” Cohen adds. Calm reassurance will help them cope with a frightening loss of function.

It’s normal for family caregivers to experience rage, helplessness, frustration and guilt while trying to help an intransigent older loved one, says Barbara Kane, co-author of “Coping with Your Difficult Older Parent: A Guide for Stressed-Out Children.” “You may revert to the same coping mechanisms you had during adolescent power struggles with your parent — screaming, yelling or running out of the room,” she says. “You need to understand what parental behaviors trigger your emotional response and realize you have other choices.” (And Kane advises considering seeing a therapist yourself if necessary to deal with a difficult parent.)

Here are nine strategies to help you overcome the objections of a recalcitrant loved one:

1. Start Early
Ideally, families have relaxed conversations about caregiving long before a health crisis. Look for opportunities to ask questions like, “Mom, where do you see yourself getting older?” or “How would you feel about hiring a housekeeper or driver so you could stay home?”

2. Be Patient
Ask open-ended questions and give your loved one time to answer, says Care.com Senior Care advisor Mary Stehle, LCSW. “You can say, ‘Dad, what’s it like to take care of Mom 24 hours a day?’.” But be warned: Conversations may be repetitive and tangential, veering off-topic. It may take several talks to discover the reason your mother, a meticulous housekeeper, has fired five aides in a row is simply that they neglected to vacuum under the dining room table.

3. Probe Deeply
Ask questions to determine why an elder refuses help — then you can tailor a solution, says Kane. “Is it about a lack of privacy, fears about the cost of care, losing independence or having a stranger in the house?” says Kane. To build trust, listen with empathy and validate rather than deny your loved one’s feelings. (Learn more about starting a conversation about care with your parent)

4. Offer Options
If possible, include your parent in interviews or in setting schedules, says Stehle. Let them choose certain days of the week or times of day to have a home health aide come. Emphasize an aide will be a companion for walks, concerts, museum visits and other favorite activities. (Find a senior care aide.)

5. Recruit Outsiders Early
“Sometimes it’s easier for a parent to talk to a professional rather than a family member,” says Cohen. Don’t hesitate to ask a social worker, a doctor or nurse, a priest or minister — even an old poker buddy — to suggest your parent needs help.

6. Prioritize Problems
Make two lists, says Cohen, one for your loved one’s problems and another for the steps you’ve already taken — and where to get more help. “If you don’t categorize your efforts, caregiving becomes this huge weight,” says Cohen. Writing it down and numbering by priority can relieve a lot of stress.

7. Use Indirect Approaches
If your father has dementia, offering less information may be more effective at times, suggests Stehle. “You could let your parent know the aide is someone very helpful who can take your father on walks, fix him meals, and help him throughout the day. You don’t need to explain every aspect of care the aide will provide before the relationship has been formed. This may make your loved one feel less threatened.”

8. Take it Slow
Weave a new aide in gradually, says Kane. Start with short home visits or meet for coffee, then bring the aide along to the doctor’s a few weeks later. “You leave early on some pretext, letting the aide accompany your parent home.”

9. Accept Your Limits
As long as seniors are not endangering themselves or others, let them make their own choices, says Cohen. “You can’t be at your parent’s side all the time. Bad things can happen, and you can’t prevent them,” she says. “You need to accept limits on what you can accomplish and not feel guilty.” It may sound unfeeling, but maybe going a day or two without meals is just the reality check an elder needs to welcome a badly needed helping hand.

 

“What I wish someone had told me in the beginning” (from Alzheimer’s daughter)

This email will be of most interest to caregivers.

As you might imagine, I scour the online support groups when I get a chance, looking for good articles or tips to share.  I saw this post made last week by a woman whose father has Alzheimer’s, and a follow-on post by a woman whose mother has Alzheimer’s.  The post is titled “what I wish someone had told me in the beginning.”  Though I found this on an Alzheimer’s-focused online support group, I think several of the suggestions are applicable to those in the Brain Support Network group.

Robin

“What I wish someone had told me in the beginning”
Posted by Sharon909 on AlzConnected.org’s Caregivers Forum
Wednesday, June 8, 2016

1) Make sure SOMEONE goes with your loved one to all doctor appointments. My father would ‘forget’ medication changes or instructions before he left the room, and then argue with me about it.

2) Make sure to log all of their medication, what they are for, how they are spelled, and what the dosage is. Put it somewhere where it can be found in case there is an emergency and paramedics need the info. Keep a copy for yourself in case you have to answer questions by phone. People with this disease tend to ‘hide’ their medications and when there is an emergency there wont be time to search the house for the bottles. My father had duplicate medications and was taking brand and generic of the same drug and ended up in the ER several times before I realized why.

3) Make sure to have the doctor notify the MVA [motor vehicle authority]. They will schedule your loved one for a re-test. If they fail they will revoke their license. Its scary when they get lost driving to the store or forget the rules of the road. And it helps for the government to be the bad guy, and not you.

4) Find an Elder Law Attorney. Take your loved ones to visit them while you are with them. Have a power of attorney done (making sure it gives you all the powers to gift funds and act on their behalf on all matters! Mine is a dozen pages long!), advanced medical directive, DNR, etc.

5) Have the attorney review their financial status. If at ANY point they may have to file for medicaid, the attorney can help transfer assets into a family account now, to protect it from being seized in the future.

6) Have your family discuss caregivers now. The further along the disease progresses, the less agreeable they will be to letting some stranger in the house to help with cooking, cleaning, driving, errands, medication management, etc. Even if you only start with 3 hours a day, one day a week, try to get something in place. I had to tell the caregiver to pretend they were a neighbor coming to visit. They sat on the porch and just talked for a few hours to chat and report back on anything that seemed alarming.

7) Have copies made of EVERYTHING in their wallet.

Order a duplicate license, SSN card, insurance cards, credit cards, etc. As the disease progresses, they will HIDE their stuff and then lose it. They will accuse everyone of stealing it. But you will need their ID and insurance cards for everything so its best to keep it safe. I let my father keep expired bank cards, empty gift cards, a checkbook to an old closed account, and his license and insurance card. But when it was time to go somewhere, I knew I had the right stuff.

9) Start purchasing items to secure the thermostat (my father would have the A/C and the furnace on at the same time). Get an ‘easy’ remote control (my father would press every damn button and we would spend hours trying to get the TV right again). Have the hot water tank temperature adjusted so they don’t scald themselves (my father wrote on the wall AND on the sink with red sharpie marker “hot” and ‘cold”. So don’t let her have any sharpies! lol.)

10) Have them agree to put any fine jewelry or valuables in a safe deposit box, or a fire safe (with extra keys) or distribute to family members now. My father hid his cufflinks in his shoes and his USMC medals in the cereal box. We almost threw them away!!

11) If they have a pet, get autodispensers for food and water.

12) Put everything on a surge protector and remove questionable appliances from the house. My father had a house fire because he plugged in an old space heater and forgot to turn it off.

13) Go around the house and take pictures of everything. If there is a robbery or fire, you will more easily submit a claim.

14) Notify the neighbors, the bank manager, the sherriff’s department, the pharmacy manager, the accountant, and anyone else your loved one may call to let them know what is going on. My father called 911 for everything and the pharmacy manager would call me whenever he tried to refill a prescription on his own.

15) Remove all firearms from the house. This seems obvious but when your loved one is military, its not an easy task. My father called the police and told them I stole his guns, but when I explained his dementia they thanked me for being safe.

Comment Posted by Jo C.

I would also add that it is best to find their birth certificates, marriage certificate, any divorce papers from prior marriages if there were any; any military papers including their discharge papers and the deed to their house, registration to any vehicles, insurance plan certificates including homeowners insurance policy; long term care insurance policies burial insurance polices, bank statements, original Trust documents; Wills; DPOAs, HIPPA Waivers; etc,

If there is no diver’s license, take their State ID; if they do not have a State ID; have them go to DMV and get one. NOTE: In some areas, if the person is unable to leave the home or if it is a taxing effort for them, DMV will send someone out to the house to take the photo and have papers filled out. Great service and used it for my parents. In our state, Medicaid wanted either a driver’s license copy or a photo state ID.

I also had as much as I could in their bills put to automatic debit including insurance policy payments so they would not go lapsing. I eventually took over all finances and bill paying, but we had to start low and go slow.

Advice for dementia caregivers

Though this New York Times article is title “Advice for Alzheimer’s Caregivers,” the article applies to caregiving for anyone with dementia, not just Alzheimer’s Disease (AD).

A key excerpt from the article on caregiving:

“Research conducted at NYU Langone found that the emotional and practical support received from family and friends led to significantly fewer symptoms of depression and stress and better physical health of the caregivers. The study also found that those caregivers were able to keep their relatives with dementia at home for a year and a half longer than those who did not receive support.”

Please attend our caregiver-only support group meetings, find other support group meetings (for Alzheimer’s or Parkinson’s caregivers), or find an online support group! Let me know if you need any leads.

This article is part of a group of articles in this week’s NYT about Alzheimer’s. One very long article, “Fraying at the Edges,” is about Geri Taylor, who has AD, and her husband Jim. It’s a fascinating look at someone coping with an AD diagnosis and trying to live life to the fullest. There’s a link to that article from the online version of the caregiver article.

www.nytimes.com/2016/05/03/nyregion/advice-for-alzheimers-caregivers.html

Advice for Alzheimer’s Caregivers
By Amy Zerba
New York Times
May 2, 2016

Robin

Issues in Dementia Diagnosis, Research, and Lexicon (Alzforum – April 20, 2016)

A nice write-up was posted today to Alzforum on the recent Alzheimer’s Disease-Related Dementias (ADRD) summit at NIH. This year’s summit was focused on Lewy body, frontotemporal, vascular, and mixed dementias. Here are some interesting quotations from the write-up:

  • Because many dementia patients are unaware of their problem, they often don’t tell their doctors. “Families participate in that, too. It is human nature,” said David Knopman, Mayo Clinic, Rochester, Minnesota. This leads to significant under-diagnosis. “Primary care practices are also problematic: physicians don’t have time for a mental status exam or to talk to families, and they aren’t always familiar with all the various dementing illnesses,” Knopman said.
  • Treatable causes of dementia are quite common, [Neill Graff-Radford, Mayo Clinic, Jacksonville, Florida] said: sleep disorders, thiamine, copper, or other nutritional deficiencies, and certain medications, to name a few.
  • The diagnostic criteria for DLB and FTDs work well, and even when the dementia is progressive, symptoms can be controlled early on in some cases. For instance, medications can control sleep disorders, cognitive impairment, and motor problems of DLB, and treating hypertension may slow the progression of vascular dementia.
  • What’s more, an accurate diagnosis can direct people toward clinical trials and help predict their rate of decline, Graff-Radford said.
  • “There’s a dearth of researchers and geriatricians from a time when we could not fund Alzheimer’s and related dementias,” said Maria Carrillo, Alzheimer’s Association in Chicago.
  • Knopman said scientists need to better define the syndromes and etiologies they study and describe them with more precise language. Among Alzheimer’s and Parkinson’s researchers, entrenched debates about terminology have arisen because clinicians classify diseases based on symptoms, whereas pathologists classify them based on molecular pathologies.

Here is a link to the full write-up: http://www.alzforum.org/news/conference-coverage/ad-related-dementias-summit-2016-progress-aims-dollars

Robin

“Dementia patients are wrongly told ‘it’s just a mid-life crisis’ because doctors miss tell-tale signs of symptoms”

This post may be of interest to those dealing with dementia.

Though this article is mostly about FTD (frontotemporal dementia), it makes the important point that physicians miss non-Alzheimer’s dementias because many physicians only know to look for memory loss.

www.dailymail.co.uk/news/article-3513263/Dementia-victims-wrongly-told-s-just-mid-life-crisis.html

Dementia patients are wrongly told ‘it’s just a mid-life crisis’ because doctors miss tell-tale signs of symptoms

* Thousands have types of dementia that have wide-range of symptoms
* Traits, other than those associated with Alzheimer’s, are being missed
* Changes in personality and a loss of motivation can be warning signs
* Some patients can take years before doctor realised and diagnose them

By Tammy Hughes
The Daily Mail
Published: 19:58 EST, 28 March 2016 | Updated: 05:07 EST, 29 March 2016

If you want to learn more about FTD, there’s a one-minute video on the webpage with the article.

Robin