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Paulcar Asked March 2018

Grandmother refuses treatment, what can I do?

Hi my grandmother had a fall recently and she was admitted to the hospital. Then went to a short term rehab. She’s been there for 3 days. She’s gone for one walk. She’s 90 and has lived alone for MANY years. And has agoraphobia, anxiety and will refuse everything. Cry. Yell. Anything. She will only sometimes listen to me but usually tells me to shut up or that I need to mind my own business. She has moderate dementia. I’m the only one that takes care of her. I’m her HCP but apparently it needs to be invoked at each facility she goes to? I though once it’s invoked that’s it. I tried to talk to my brother who hasn’t helped at all and lives much closer to her than I do. He feels she doesn’t need anxiety medicine or depression and that they are just trying to drug her up. Which isn’t the case they want her to participate in the therapy so she can get stronger. They are good there. I watch them with her and the other patients. But she just wants to lay in bed. What can I do?!? I’m just at a loss, so sad and very overwhelmed.

Caring2Love Mar 2018
Hi Paulcar,

It's always tough when they refuse treatment, as they don't realize it often results in a greater burden upon their loved ones and those who care for them. But, she may be sensing her time is near and would prefer to just allow it take it's natural course.

At any rate, by the sounds of it - she must be a 'tough old bird' - lol! (As my husband used to say about his elderly mom when she were alive.)

Paulcar Mar 2018
Hi Caring2love,
Apparently she’s been in this condition for several years with no treatment. I didn’t grow up with her so when I stepped in she had already been living this way for many years. She seemingly went to the hospital for a fall in 2012 and her numbers are pretty much the same. Although her Nurse Practitioner (her main doctor) said she’s on # off from being in renal failure. But she’s already declined treatment.

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Caring2Love Mar 2018
Hi Paulcar,

She has stage 4 kidney failure, but doesn't see a doctor? If you can't get her to go see a doctor, that's difficult.

At least if she did go the doctor could determine how long she might have before the kidney failure worsens, and if she should have hospice care. If she was on hospice that would also help to relieve some of your burden.

Countrymouse Mar 2018
Sweetie. This is very tough to manage on your own - I'm sorry, I was too quick to assume your brother was butting in and bullying you. *Of course* it's only natural to seek others' opinions if you're unsure - come to think of it, isn't that what this forum is for?!

I think you're probably right about her next steps after rehab. If she continues to protest, I think you're probably right again - that she will consent to go to a nursing home provided she is allowed to do so "under protest." Her way to "rage, rage against the dying of the light."

You seem to be happy with the rehab team's approach, so trust them. If there is any way to help your grandmother make progress, they'll find it. And if not, then that a choice it's fair for your grandmother to make, too. Wishing you comfort - hug that bunny!

Paulcar Mar 2018
Hi everyone. Thank you for all the words of wisdom. I asked my brother because I got very overwhelmed today with her refusing everything and then having a big nasty attitude with me. I know she doesn’t mean it but I can’t help but feel a bit upset. My brother doesn’t believe in mental health and drugs don’t do anything but make you someone you’re not. I disagree. I didn’t think that would be his response when I asked him but it was and I told him obviously he can’t help me and that I had to go. I don’t have any family that can help me. There’s no one but me. While I’m trying to get guardianship I’m stuck in the meantime. This is a HUGE responsibility and very time consuming and mostly emotionally. I do not mind at all being there for her. Making the right decisions for her. I just wish she would be a bit more cooperative. She was diagnosed with agoraphobia, the moderate dementia, anxiety among other things not related to mental health.

My GM will not be able to go home and live alone like she was. It is NOT safe. I live 40 mins away. I’m a single mother of 3 kids. And I’m taking care of her. 2 cats and a bunny lol Also she has diabetes that has gone untreated for many years. It caused her to become blind, she neuropathy, hypersensitivity, stage 4 kidney failure. This entire process is nothing I’ve experienced before. Both of my parents passed away long before elder care was needed.

She eats in her room, she does not go to the cafe or sitting room. When she was at home No she was not taking any medicine. She also had not been to a doctor in at least 7 or more years. I wish nothing more for her to be happy and pain free, calm and trying to enjoy the little things that can make her happy. Which is difficult because she is blind. She can not make good decisions for her healthcare. If she went home elder services would get involved and she’d be sent to a nursing home anyway. She will be going to one. She refused at first but I think it’s actually what she wants. I’m feeling very defeated but I’m not giving up. I love her very much and I’ll always be by her side even when she gets pissed off at me. I feel that she is my responsibility and that’s that.

JoAnn29 Mar 2018
If she doesn't cooperate Medicare will ask for her to be released. You may then be able to get homecare.

freqflyer Mar 2018
Having agoraphobia isn't easy. All it takes is a different environment, such as a hospital or Rehab center to bring the phobia back to the surface. Different noises can be a factor.

For your Grandmother, who had lived alone for many years, all these different noises can become confusing and scary. She probably cannot enjoy her meals in the common dining room because of so many unusual sounds as Rehabs take care of everyone no matter what the age or injury/illness. Probably makes her want to bolt back to her bed and crawl under the covers.

Bet Grandmother doesn't like to eat out at restaurants where the voice level is high, I know I can't. Give me the early bird specials where the restaurant is mostly empty :)

Meds can help with the anxiety which can trigger the agoraphobia. Even a very mild dose can help Grandmother be calmer. My gosh, Grandmother should be enjoying her final years doing things she likes.

Sunnygirl1 Mar 2018
I'd act on behalf of her, since she has appointed you to do it, when she was thinking clearly. Since she now has dementia, I'd keep in mind that she may not be able to make good choices, use reasonable judgment or do what's in her best interest. So, What does her doctor say? I"d let the professionals recommend what level of care she needs. If you can't provide around the clock, hands on care in her home, then, it will be up to the professionals to do it. It's unlikely they will release her to go home to care for herself in that condition. I'd try to get a tough skin, be patient and think of ways to soothe her when she complains, explaining that she's getting good care until she gets better. And if she isn't interested in physical therapy, I'd listen to the professionals. Sometimes, dementia renders the person unable to really participate. And she may be forgetting how to walk. Is she open to a wheelchair? MY LO was much more mobile once she got into a wheelchair, because she didn't have to worry about falling and she could scoot around with her feet in the chair. I might focus on keeping her safe and protected and not forcing anything. 

I'd let the staff in the facility deal with the medication. They can't force it, but, they have a lot of experience in administering meds.  

If you brother isn't helpful, I'm not sure I'd expect him to have my back. If he's not well read on her condition and informed, expecting him to support you may just provide more disappointment.

cwillie Mar 2018
Often you need to dangle a carrot to get someone to make an effort, does she understand that the key to going home is to work hard in rehab?

Countrymouse Mar 2018
Your grandmother gave you the authority to make decisions on her behalf regarding her healthcare, including accepting or declining treatment.

She didn't give that authority to your brother.

Why are you asking him?

That said, your grandmother is 90 and has been in rehab for 3 days. Give her a chance to find her feet and develop trust with the therapists. Stay positive, keep encouraging her, listen to professional advice. Then you make the decisions using your best judgment of what is best for your grandmother. Good luck! Come back and let us know how you're doing.

jeannegibbs Mar 2018
You say that she has moderate dementia. Where was this diagnosed? Is it part of her medical record? Dementia can range from slight confusion and memory loss to total lack of ability to make informed decisions. Where is grandmother on this curve? Generally people with moderate dementia (anything beyond very early stage) cannot safely live alone.

If GM is still competent in the legal sense, then she is the one who gets to decide if she'll stay in the rehab facility, whether she will cooperate with PT, and what pills she will take, etc. She is within her rights to tell you to mind your own business.

If GM cannot make informed decisions for herself (and there is medical confirmation of that, not just your opinion) then you as her health-care proxy are responsible for decisions. You certainly may consult with your brother, but it is your decision, not his.

Has she been taking anxiety meds at home? Are they continuing them in rehab? How has she reacted to the hospital and now the rehab, with her agoraphobia? Are they doing anything in particular to address that problem?

This must be very hard for you. You want to do what is best for her, but she is not cooperating.

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