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Rackem Asked May 2013

Is it illegal to stop administering prescribed non-life saving meds to someone w/dementia? Her body's alive, brain is dead, what's the point?

Mom is 78, has no idea who her only two children are and believes she has been put in prison against her will. She has been "living" in the memory care center of a very upscale assisted living facility since 2008. The doctor has prescribed zetia and lipitor for her. I just don't get it. What is the point of keeping her body healthy while her brain turns to mush? I'm only interested in the legal ramifications. Maybe I'm demented, but I don't have a problem with her dying of a heart attack. My mom loved to "live" life. She is miserable. I have already informed all of my loved ones, not to keep administering body saving meds to me if my fate is the same as my mother's.

EXPERT Carol Bradley Bursack, CDSGF May 2013
You are not demented or anything but compassionate. It seems as though your mother must be in late stage dementia. I'd talk with the doctor about hospice care. They do not administer life extending drugs. They do control any pain. If your mom is considered terminal within six months, she should qualify. Late stage Alzheimer's is generally considered terminal. If her current doctor isn't sure about her status you can ask for a second opinion.
Good luck. Many of us know what it is to see our loved ones "live" through years of misery. Few people would choose to linger like that with no hope.
Carol

lily04 May 2013
donnalee...I know what you mean about living with a time bomb. Every morning, I hold my breath when I check on my mom. To find her breathing is both a relief and a dissappointment.

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JessieBelle May 2013
I agree with you completely. I have heard many times of medications being given and procedures being done of people with late-stage Alzheimer's. These things make no sense. For example, why should we be concerned about someone in the later stages of Alzheimer's getting osteoporosis? And are colonoscopies or mammograms really necessary, considering that we wouldn't want to do surgery and try chemo at a late stage. Sometimes we just have to use good sense. The physician in charge of your mother's care makes decisions about the medications. If hospice cannot be involved, perhaps the person who has the healthcare POA can speak with the doctor about discontinuing unnecessary medications. It would be one less pleasant thing your mother has to go through each day. I agree with you completely about stopping things that make no sense.

Rackem May 2013
Thank you for the advice. The facility allows for Hospice care. I'm just not sure they would consider her terminal in 6 mos. If left to her own capabilities to care for herself she would be dead in 6 months. She is physically mobile and she feeds and "dresses" her herself (all be it in other people's clothes). Her body is better than most 78 year olds. They take good care of her in the ALF. She will probably live for 10 more years if they keep her cholestrol in check. She is miserable. She is anxiously awaiting the day "she will get out her box in prison and be free to live her life the way she wants to live it and where she wants to live it." She can't remember what she doesn't remember. She doesn't know that she only has 2 daughters and that they are sitting in the room next to her. She doesn't know that she can't read anymore or enjoy watching a movie. In her soul, she is a fighter. She doesn't realize she has lost the battle. She is emphatic that she is somewhere that she doesn't belong and she doesn't know why she has been put there, but she says it is a nice place and they treat her well. There is nothing on this earth, that any of us on this earth, can do to make her content. At this point, death seems to be her only path to peace. I prefer not to prolong her life with body sustaining drugs.

sharonmit May 2013
I completely understand. When my moms physician wanted to recommend a vitamin for my mom.....the look on my face apparently told him everything he wanted to know...He said "oh, your not doing vitamins?" I said, " No, we are not doing vitamins".

Mom no longer knows me, where she is, nothing.....but yet she is as strong as an ox. Not one health problem does the woman have other then dementia. We stopped the aricept because it was no longer working. My mother's only meds are for anxiety. I would not allow meds at this stage even if she were to be diagnosed with something.

donnalee May 2013
Interesting question and answers. My husband is 87 and I think in late stage dimentia. He was diagnosed with dementia about 10 years ago. He takes a lot of non-life saving meds such as aricept, namanda, colesterol medication. He also takes warfin but that I think is life saving. He has had a 3-way bypass 21 years ago, and clots in the lungs, legs and heart. He also has PAD and had surgery 17 years ago on his leg. He goes to day care 2 days a week but sits and sleeps but it allows me time away from home which is needed. He lives with me fulltime. He can't feed, dress, or shower himself and is incontinent. If I were to quit giving him some of his meds, wouldln't it make him worse and then maybe become bedridden which is is not at this point. Would it make life harder for me? If I contacted Hospice, what could they tell me? How can anyone tell me how long he has to live. He burps constantly and I wonder what causes this and think maybe it is part of his heart condition. Like living with a time bomb. Any suggestions are appreciated.

Thank you and God Bless you all. Such a nasty disease and so difficult for everyone involved.

jlschuster827 May 2013
Hello: I am sorry you are in this difficult situation. Did your mother have an advance directive? That would help to support your wishes to stop these treatments. It is not illegal to do so--in fact, the courts have frequently affirmed and upheld Americans' right to refuse medical treatment. Are you your mother's health care proxy? If so, you have the right to refuse this treatment on her behalf. You should look to hospices in your own community. They can now actually send a physician out to assess your mother and make recommendations to the nursing home--without having to admit her to hospice.

To the person with the question about Namenda and Aricept--those drugs are meant to slow progression for a bit, but often for not such a long term. In the meantime, they are expensive, and may not be doing much to help him, as it sounds like his disease has progressed. You are right, he may very well be around for more years to come. If you have not yet done so, you might consider contacting the Alzheimer's Association to find a local support group for caregivers in your community. That is often a helpful resource for families faced with challenges you describe.

I am not a clinician, just a writer--I hope these ideas are useful to you.

Best,
Janice

signmeister May 2013
My mother-in-law, who is 92 and blind from macular degeneration, has had dementia for about two years. She was in a care facility in Florida for about a year and we then moved her to Vermont to be closer to her family at her request. We found an ideal facility very near where we live and settled her in there, only to have them kick her out for her calling other residents terrible names and threatening people with her cane. She also punched the owner of the facility. She is now staying with us while we look for another facility (and the cane is now history - she has a walker now.)

She takes medication for her dementia, for high blood pressure and for COPD. There is also a prescription for her thyroid and supplemental potassium. I have long felt that she doesn't need all of these prescriptions. She prays daily for the Lord to take her, but she is in reasonably good health and could probably live for another ten years.

In my opinion, prescribing life prolonging drugs for people who have zero quality of life is downright cruel. I can understand pain relief, but the rest of this stuff seems useless.

Seven4real Jun 2013
Oh my gosh, I need to be here on a daily basis! I learn so much and I need to vent!
My mom was diagnosed in 2008 with Alz and has tried every med they would push on her. Last time I had her at the Neurologist I said NO they cause more anxiety and behavioral problems than they help. She was actually hitting me at times, and the bad mouth! She has been living with my husband and I for one year and I was very hopeful that it would be better for all of us to have her here. I tried vitamins and she had already been taken off all of her meds by her family care physician. I think he understood her desire to not prolong he days on this earth. I still do give her a multi vitamin, the b vitamin complex "Cerofolin" the neurologist prescribed and baby aspirin a day as she has a heart valve implant and it keeps her blood thin.She wasn't even taking that when she was in the assisted living. I now keep her clean, she doesn't remember to shower or even brush her teeth. Amazingly she is strong physically and makes her bed every day, helps me fold the clothes, and is generally pleasant....But there are times that do try my patience.
Last night my hubby was out of town with our sons and grandsons camping ... he so needed to get away and so something fun.
I decided we would have a girls night out and take Mom to dinner. We got right in which was good as she is not patient. The first words out of her moth were, "It is so d**** noisy in here. I told her maybe if she took out her hearing aids it would help to curb the noise for her. She didn't like that suggestion.
I explained it was dinner time and lots of people were eating and we would order quickly. She wanted a glass of wine and said for me to order as she like everything. I got some appetizers and a salad to split. I had to tell her that we were still getting a meal so she might want to slow down on the onion rings. She was snotty and said "I know what I want to eat and I am going to eat it."
I explained that she had a meal coming and she said" I am not going to eat anymore, I have already eaten." Her meal was a shrimp plate and rice and veg so was not large but she would not touch it. I told her I was going to eat my meal which I had to do quickly .We boxed hers up and I had to stop at a store to grab something quick so she insisted on staying in the car ...it was 84 degrees out. I said no and she said" Why the H*** not."
I was at the end of my patience at this point so I explained I was responsible for her and it was too hot and if we kept the windows down someone might bother her. She cussed again got out of the car slammed the door really hard. I then said, " No you are getting back in the car for acting like a 3 yr old and are going home to your room where you can spend the rest of the evening " She always says I don't need you to do things for me I can do them for myself...but she can't. I know I lost it and I know it just made her pissier, but I feel like when I try to do nice things for her it never works out anyway. When we got home (even though she does'nt need my help and can do everthing for herself) she wondered what that thing in her room was and why it was blowing and could I turn it off. I explained the air conditioning unit in her room and how I had set it to only come on if it was hotter than 70. She says Ok. 3 minutes later she comes down in 2 pairs of pajamas and asks me again about it. I turned it off this time and opened her windows which she then says "I can do that myself if I want it opened". I ask her if she is worried about the windows being opened (for security reasons), and tell her she is on the second floor and maybe a cooler night breeze would help to cool off the room. At this point her room was about 80 degrees. I know she doesn't get it but she fights me at every turn.I worry about her dehydrating and she drinks very little water and only likes coffee. I left with the windows open and she probably shut them as soon as I left. This after noon I am getting a care person in and going shopping even if it is just for TP laundry soap and a new lipstick hopefully to make me feel better. Thanks for letting me vent. Thankfully my mom is not incontinent for the most part has had a few accidents, where she hides the wet stuff in the closet, but I agree that having the body and no mind is just horrible for everyone!

skinonna Jun 2013
I think we need to ask if we are prolonging life or prolonging death.

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