Ask Miriam – December 2024
Dear Miriam,
My partner and I have been together for 38 years, and he was diagnosed with Alzheimer’s six years ago. When we were younger, we made sure to get everything done legally and in writing, so that if anything happened to one of us, the other would be taken care of. We also completed advance directives naming each other, and my partner states that he wants “everything” done, including resuscitation and intubation, if needed. So, I know how he felt, at least at that time. But now, his dementia has gotten so much worse, he’s mostly in bed these days. And, honestly, even in the earlier stages, he was in total denial and never admitted there was anything wrong with him. The doctor is suggesting hospice. Does that mean that they would not take lifesaving measures if, for example, his heart or another organ stopped working? Since he never talked about his diagnosis, I don’t know if he would have changed his mind about doing everything to preserve his life. I don’t know what to do. I am exhausted and completely isolated as his only caregiver. I love him, and I don’t want him to die.
—Loving Partner
Dear Partner,
I hear the love and dedication you have for your long-time partner. It is understandable that the years of seeing him struggle with dementia and the responsibilities you have shouldered in order to take care of him have left you feeling lonely and worn down. I also can understand the fears surrounding hospice and what kind of treatment your partner will get.
Hospice is not only for the very final days of life. It can also be a way to provide comfort care and additional support in the later stages of a chronic illness, like Alzheimer’s or another dementia. Hospice doesn’t mean giving up on your partner or withdrawing care. It is about bringing in a team of nurses, nursing assistants, social workers, chaplains, and others to help you both manage this challenging time.
While it is important to take into consideration your partner’s wishes as expressed so many years ago, his current condition requires you to think about what is best for him at this time— a time that he did not plan for or foresee. Talking to a professional such as his doctor, a social worker, or elder law attorney may help you to gain perspective and ease your mind as you navigate this last phase of his illness.
Hospice offers a great deal of support, but taking care of someone in the latter stages of this disease can be draining. Consider bringing in a caregiver a few hours a day to allow you some time to leave the house, see friends, and recharge. And I know you are feeling the grief of anticipating his death. A caregiver support group where you can talk with others going through similar situations may help you feel less alone.
For more information about hospice and Alzheimer’s and related dementias, call the Alzheimer’s Los Angeles Helpline at 844-435-7259.
Best,
Miriam
Questions for Miriam can be sent to askmiriam@alzla.org.