AboutMary Gordon Expertise Several years direct experience as caregiver for family member who died of end stage AD. Did lots of research and dealt with a lot of health care professionals and caregivers over the 7 years from diagnosis to the end. Used various care options from community based resources to increasing levels of institutional. Mother of three, two born during our loved one's decline, so I know what it is to be the ham in the sandwich, taking care of the older generation and the younger at the same time and trying to balance everyone`s needs. Ask me, I`ve probably been there, done that. We made lost of mistakes and learned everything the hard way - but you don`t have to! If I can`t answer your question, I`ll steer you to a place or person who can.
Experience Currently a program manager for a large utility company. My Alzheimers experience comes from having the illness in our family. Out of necessity, we did a lot of research in order to understand the disease, plan for what might come next, and make the right decisions to help and support our loved one. Please note, I am a Canadian living in Toronto, and therefore am not the best person to ask about US regulations and insurance rules!
Question QUESTION: Mary,
mom is in a alzheimers unit . she has been there for 8 months. she is in stage 7 my sister and i both have poa. we have decided to take her off her alzheiners meds. she don't talk much at all she does say ( i love you ). i go see her at least 4 times a week . she don't know who i am but that is something im use to. the other day she got mad at me because i was changing her cloths, and she slapped me it broke my heart and i cried all day . i really think mom has been through enough. she has been fighting this for at least 10 years. shes not eating much at all and she mostly grunts . she can still walk but she has fallen several times in the past few weeks . she is having trouble holding her head up . she stays constipated .she has been on benafiber and some other kind (i cant think of the name ) but it didn't work long either.i really hate that mom is having to go through this . right now she has a uti she was on antibiotics but it didn't help so now they want to keep giving her antibiotics i guess for 10 days (not sure for how long). do you think its time to let her go or do you think we should keep giving the alzheimers meds ? thank you for any advise you can give im looking forward to hearing from you .
sandy
ANSWER: Hi Sandy,
You might want to have a conference with the nursing home staff about hospice type palliative care, and whether they think your mom is at the point to seriously consider it. That would mean stopping all meds except for things that will keep her out of pain and comfortable.
At this stage, my gut feel is that you may not want to prolong by doing anything to slow down the dementia. Drugs like the alzheimer's meds are only really worthwhile if the persona has a reasonable quality of life you are trying to preserve. If she is in a sad state, it may not be kind to actively be taking steps to try and keep her going. She and your family may be ready to just love each other and let nature take its course.
Usually hospice care is wonderfully supportive to both the patient and their families. The aim is to reduce suffering - not just hers, but yours as well. They want everyone to be at peace, comfortable and as free from mental, emotional and physical pain as possible.
The rules about qualifying vary from place to place - generally the criteria is that her doctor feel that she is entering the terminal phase, and may have less than 6 months to live. You need to ask for a meeting with the doctor and the nursing home staff to see what they have to offer, and what she might qualify for where you live. They will be able to discuss the options with you, and you can decide together what the best and most caring choice for your mom is now and going forward.
Don't take her striking out at you personally. It's like a small child lashing out. She doesn't mean to hurt you. She doesn't really realize what she's doing. She just knows she's uncomfortable and bothered and want's it to stop. It's the disease, not the mom who loved you so much.
Hang in there.
Mary G.
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QUESTION: if the Dr don't want to take mom off the alzheimers med can we insist on it or do they have the final say ? i know my mother would not want to live this way her, greatest fear was to get alzheimers . she always said if she ever got that she would kill herself,so when the Dr told us that she had alzheimers we never told her . was we wrong for keeping that from her ? i wouldn't let my dog suffer but yet i have to set back and watch my mother die a little every day . the only thing is she don't know . that im grateful for . thank you so much . sandy
Answer Sandy, the Alzheimer's drug is NOT necessary for her physical health. It is only to slow down the progress of the dementia - not everyone takes it, it doesn't work forever, and at a certain point, most families stop it. It's expensive, and if the person is too far gone to get much benefit from it, no doctor is going to insist.
If you or other family member have power of attorney for medical decisions, no doctor is going to argue with the decision. What you do need to talk to him about is the palliative care option. There are special hospice programs she may qualify for, and you have to ask him if she is at the point she will qualify, and if not, what else can they do for her.
Palliative care means that they will likely treat her UTIs so she's not uncomfortable, but it means if she has a crisis, they will keep her out of pain, but not take her to hospital, put in tubes and oxygen and IVs. They won't resuscitate her if she fails, they won't subject her to tests and procedures and treatments.
She may survive some time like this, so it's not like they will discontinue the Alzheimer's drugs and she'll immediately go down hill and pass away in a very short time frame. It's often very hard to predict, so be prepared for this not to be easy - it may be quick or it may be very slow. My mother in law never had the benefit of the drugs your mother has had, and she lived for close to two years in the final stage, unable to walk or talk or do anything. She was very healthy and despite her very sad condition, she lived on for longer than anyone expected. No matter what, this is going to be brutal on all of you that love her - but keep reminding yourself that she is not really aware of what is happening to her. That really is a blessing. She is past the point where she will have regrets or fears or be torturing herself with bad thoughts.
Don't beat yourself up about not telling your mom the diagnosis. You made your decision based on what you thought was best at the time and that is all anyone can do. Really, what would have been the point -no one could really do anything about what was going to happen to her, and she would have been very distressed and upset. Plus, I don't doubt that by the time she was diagnosed, she probably would have forgotten what she was told a few hours later, and then would get upset all over again when you reminded her.
Sometimes it's better not to know when your fate is something so awful. Dementia is most people's worst nightmare. It certainly was for my mother in law, who had seen her own mother go through it from a stroke.
