What should I do if my mom with Alzheimer's won't see a doctor?

8 answers | Last updated: Nov 14, 2016
Snow asked...

I do not have a diagnosis of Alzheimer's. My Mom refuses to see any medical people at present. It's possible that I will have to force the issue with a court petition. She says she does not want to see any doctors as she had gilleon beret before and said she had enough and wants to stay home. She was in health care and is no dummy. She did physical therapy on people and worked in a nursing home. I'm sure this is part of the reason. I believe at least part of her knows what is happening. Is this possible?? Does she have the right to make this decision? Am I liable for withholding treatment if I honor her request? Can she make this decision since she is herself often still? If I force the issue, will they let her return to her home? I am not trained in health care at any level. I am learning fast about this disease. She still knows who I am and many people have called me a liar cause she acts so normal at times.

Expert Answers

As Founder and Director of Circles of Care, Ann Cason provides caregiving, consulting, and training services to individuals and public and private organizations involved in eldercare. She is the author of Circles of Care: How to Set Up Quality Home Care for Our Elders.

Thank you for asking this question. You are learning to listen to your mother, even though she is not well. So many families have shared their stories. When I listen, I may only hear Alzheimer's and refusal of care.

Does she suffer from Alzheimer's or from some other conditon? Reserve your judgement.  The important point for you right now is this: Your mother has a strong will. Her life has not been easy. 

Don't try to oppose her now. Try the light touch.

Spend some time engaging in activities that you know she enjoys: tea and cookies, coffee and doughnuts, looking at birds, going for a ride.

Try to get your mother talking about her work, the physical therapy or the nursing home. Try to find the parts of her life that she feels good about.  Let her air some of her regrets. 

Find what makes your mother more relaxed. 

For now, don't try to plan ahead.  Don't oppose her unless you have to, even if her personal appearance starts to slip. When a need arises that she accepts as real, she will see a doctor or accept some care.   

But a word of caution.  If your mother becomes too restless or you feel that she is in danger of wandering, you will have to act.  You will have to say, over and over, "Mother I love you, I don't want to go against your wishes, but I am afraid that you will run away.  I am afraid that you will get hurt." 

Sometimes listening means letting a person talk, hearing what is said and then listening to a bigger view.  Listen to a combination of professionals, ministers, friends and family. If you decide that you have a job to do with your mother, don't hesitate.  Listen to your heart.  Get the support that you need to do what needs to be done. 


Community Answers

Joanne koenig coste answered...

One of the questions I hear most often is "How do I get my family members and/or the patient out of denial?" This query concerning a reluctant patient refusing to get medical attention is also at the top of the most-often-asked list. I think the two questions have a great deal in common. Denial serves a purpose. It protects us from having to deal with the truth - at least for a brief time. Refusing medical visits does the same; it keeps us from having to make plans and to face the uneducated horror of dealing with a disease such as Alzheimer's (AD). In fact, the earlier the diagnosis, the easier the trip. The more information we gather, the easier the journey. One of the major reasons for wanting a diagnosis is to rule out possible treatable causes of your parent's decline. Many medical issues can actually mimic the signs of diseases such as AD but are readily treatable and frequently reversible. The quicker they are discovered, the quicker treatment can begin.

Having talked to hunderds of early stage patients over the years, I believe almost every person experiencing intellectual decline is aware that something negative is happening and that the failing ability to function is not a normal part of aging. Some seek more information from friends and family and online, some rush to the doctor's office, some do not want to discuss it at all. Perhaps your parent is in the last category where most folks feel if they ignore the manifestations, it is not real or really happening to them. As a person with cognitive issues, a diagnosis pushes us into admitting our ongoing demise and forces us to admit we may need help.

There may be no way you can make your parent go to the doctor but there may also be some paths to pursue that could be fruitful. First, try asking her to accompany you to the doctor by suggesting you have a medical problem and would like her to be with you. Find a physician who will work with you in this bit of subterfuge. Your local AD chapter may know the best physicians to contact. Be sure to alert the doctor before your appointment and list all the changes you have noticed over the past year. Secondly, suggest to your parent that you are concerned about her blood pressure, or a previous illness, or a disease that may run in your family and ask her to check it out 'for you'. The less focus on your parent's cognitive issues, the better!

Consider her long -standing personality. If she has always needed to have a sense of control over her life, don't expect this to change. This just may be her last stand against perceived interference by family and others as she feels the power to direct her own life slowly slip away. She may think of it as myself defense.
You might also consider using another person as the scapegoat. Frequently, AD folks and other elders will do something for a stranger that they refuse to do for a family member since there is no history of parent/child behavior to rebel against. A Geriatric Care Manager may be a viable choice as they have training and practice in loving manipulation. Check out www.caremanager.org for further information on an experienced professional in your area.

Try not to reason with your loved one related to the need for a docor's visit. Remember, her ability to think rationally has been impacted by whatever is happening to her intellectually and the ability to reason is affected early in diseases like AD. Trying to force your parent to deal with an issue rationally may only increase her obstinance. The accuracy of the information you offer is not half as important as helping her maintain her self-esteem and sense of control.

If nothing seems to get her to the doctor's office, seek a physician who might make a house call - Yes! They do still exist!

Kidme56 answered...

Thank you.we could try a house call,that might be thought as an insult to him At least that person is elderly,what about those who are younger?It is so difficult and heartbreaking bec. no one seems to care.Do we have to wait to care when the individual turn 70or80yrsold but not when he/ she is 54or56yearold?

A fellow caregiver answered...

you might try to get the person in to see a doctor under another reason rather than a cognitive decline. ie diabetes, gait problem which is often related to dementia. High blood pressure, something less threatening than dementia. Maybe talk to doctor ahead of time so they know the deal when you come in. Then maybe 'routine tests' ie cat scan to check brain plaque etc.. Try not to go to hospital if you can help it. If they have slight dementia a hospital stay can send them over the edge. Better with a doctor. Good luck!

Elviraskin answered...

I often get this question from families who are frustrated with their loved ones' denial. My counsel is usually to take a deep breath and relax. A diagnosis may satisfy your suspicions, but it will not change your daily life; if you force the issue with your loved one, you may put unnecessary strain on your relationship. There are a couple of medications on the market that help some people feel more focused; they slow down the progression of the disease, but they are not cures. In the meantime, you've come to the right place: Caring.com has the best advice from the most prominent caregiving experts in this country. You'll find ideas and advice on interactions and approaches that will improve your relationship with your mom. Hopefully you'll be able to establish such a trusting relationship with your mother that she'll open up to you and wish to know for herself why she feels different.

In any event, before getting an official diagnosis, make sure that all your paperwork is in order, i.e. Living Trusts, Durable Powers of Attorney, will, healthcare proxy and last wishes. Once a person has a diagnosis of Alzheimer's, her signature may no longer be legally binding.

There are other factors to consider: Alzheimer's disease still carries with it a terrible stigma, which we can't ignore. Unfortunately it will change your mom's relationships with old friends and acquaintances. We've had good results counteracting this stigma with our Alzheimer's Café (www.alzheimerscafe.com) - if there's one near you, get involved. Also attend support groups in your community (www.alz.org.)

When my brother and I realized that Dad was having problems handling his own affairs, we decided it was time to take over his living trust. We needed confirmation from the two medical professionals that he was no longer competent. At the time he had some dementia, but still functioned pretty well living alone, except for money and bills. We got him to a psychiatrist who apparently was very blunt with him. When we asked him to go to a second doctor, he flatly refused and protested forcefully that he was not crazy!

I realized the only way we would succeed was with a bit of deception. It took calls to several doctors before I found one whom I felt would work with our dilemma. We set up an appointment for a general check-up. The doctor was very gentle, low-key and treated Dad with genuine respect. While he checked Dad's vitals and took his blood, they were chatting away about his career and interests. At some point Doc said, "We've checked your heart, your lungs and your reflexes. What do you say we check your memory while we're at it?" Doc's tone was completely natural, so Dad responded with a cheerful "sure." - He failed the mini-mental and we got our second confirmation. As we left the doctor's office, Dad said, "What a nice young man. We should come back and see him soon."

Janicerae answered...

~ The legal issues which I have heard of really scare me also due to the inconvenience and cost. Right now I have my mother with us since December. Every day she has packed up everything ready to go home to Mississippi. She does not remember conversations or agreements from yesterday. She has also said she is going to call her lawyer. It goes on and on and on. Mornings memory is worse. Afternoons her mood is better. A friend of ours who is also keeping her mother...mom called a lawyer and told them that "they" were keeping her against her will. "They" did not have anything in writting stating that mom has memory loss. This would be the legal benefit of having testing done. This family has been through a never ending hell created by trying to take care of mom...daughter also has a full power of attorney.

Boulderjames answered...

There seems to be very little information on dealing with denial of diagnosis other than what I’ve read here. My Mom has gone through the testing and we have the final analysis appointment coming up. She does not believe anything is wrong and although she has gone along with the testing I am concerned about the next step(s); transitioning from her home, medical/memory care, legal issues. Her older sister refused help and ultimately my cousin had to forcefully remove her.

I am wondering there any other resources for this step in the process? How to communicate with her the need to relay on others to help and that if she would acknowledge the situation, that care and treatment can perhaps slow down this process.

Jodyisme answered...

as much as i had to argue with my husband to see a dr...i wish i hadnt bothered. drs will seldom dx dementia..and then its almost always alzheimers even when it isnt. drs we have seen will do nothing "until he can no longer dress himself". yep, exact quote i was told. its not worth trying until she really is a danger to herself..or others. or "cant dress herself". its been a waste of money for us. let her be happy. eat what she wants. sleep when she wants. be with her and treasure having her. dont buy the meds theory, they dont help. get her financials in order and a POA, etc. the rest, just wait. the time will come.