Am I being selfish and self centered by wanting to keep mom with me as long as possible?

3 answers | Last updated: Oct 03, 2016
Goshtonya asked...

I have had my mother living with me for 3 1/2 years and she has alzheimer's. I have been told that it has progressed quite a bit. She is in the hospital behavorial care unit. She has been in there since Tuesday April 5th and not one doctor has talked to me about her condition. We wanted her put in so maybe they could get her meds right. Now they are putting her on ablify, which concerns me because I have heard that it is not recomended for dementia patients, and can cause early death in alzheimer's patients. I am also being told that I need to put my mom in an alzheimer's facility. I do not want to put my mom in any place, I feel that she took care of me and now it is time for me to take care of her. I have a very close friend that lives with us and takes care of my mom when I have to work. Am I being selfish and self centered by wanting to keep her with me as long as possible?

Expert Answers

Joanne Koenig Coste is a nationally recognized expert on Alzheimer's care and an outspoken advocate for patient and family care. She is the author of Learning to Speak Alzheimer's. Also, she currently is in private practice as an Alzheimer's family therapist. Ms. Koenig Coste also serves as President of Alzheimer Consulting Associates, implementing state-of-the-art Alzheimer care throughout the United States.

Keeping a loved one at home is often beneficial to both the patient and the caregiver. However, there are several questions you may want to ask yourself to be sure this is the best arrangement for your particular situation. 1. Will you be able to care for your mom as the disease progresses into the final stage. That is, are you prepared for bathing, feeding, and incontinence that accompanies the late stages of 24/7 total care? 2. Is mom receiving appropriate social interaction in your home setting? 3. Is her leisure time being filled with activities designed for AD-folk? 4. Are you safe from 'burnout'? Check on this site for a wonderful list of ways to recognize burnout. If the answers to these questions are all 'yes', then certainly you can feel comfortable keeping mom in your home.

If you are the Health Care Proxy, then you can speak loudly and clearly on mom's behalf. Do express your concerns about Abilify to the physician at the Hospital Behavioral Unit. If he believes this to be the drug of choice for mom, then you may want to accept this decision. If you remain uncomfortable with the prescribing of Abilify, then do request another medication.

Be sure to take care of YOU!

Community Answers

Dorothy's daughter answered...

no you are not being selfish. I took care of my mom for 5 years 8 months at home until her death 12/21/10. The road was not easy at times, she had vascular dementia. I went through the typical caregiver stress at times. But I would do it all over again in a heartbeat! Wish I still had her with me now, no matter how hard it was at the end. when you take care of your loved one when they really need you, I think it is the biggest gift of love anyone can give. Love and devotion, along with it comes the hard moments, you really do give up your life during that time....but I would not have done it any differently, because of my mom, I have life, and if the roles were reversed, she would have taken care of me. I miss her so much. Do take care of yourself is very easy to forget about yourself. God bless you and your mother. I did have the help of Hospice care, and they made a huge difference, please call your local Hospice.

Noscreennameyet answered...

In the part of Canada where I live, people who want to care for their AD-vascular dementia parent at home are frowned upon by the medical community, their take being that there are only 2 options open: institution or palliative (hospice) care. Unfortunately, their definition of palliative care is to not rehydrate when dehydrated, to not give antibiotics or oxygen when required. In other parts of the world, palliative care is more humane... subcutaneous rehydration, administration of antibiotics and oxygen so that the patient is comfortable while life unfolds. I'm fighting this attitude with all my might. One doctor said to me that my mother is a burden on society (!!!), another said that caring for her must be very burdening (no, what is burdening and exhausting is dealing with an inhumane medical system). You have to be ready to do research on medication prescribed and refuse when appropriate, you have to be ready to deal with incontinence, with refusal to eat or drink, with fluctuating delirium, but you get moments of lucidity and communication that are worth all the mental pain and anguish. Even the best facility cannot give your mother the amount of time and care that you give her. A social worker asked me how I felt about the possibility that caring for my mother at home might kill me... My answer? You don't take your energy with you when you go... You have to spend it while you're here. If I survive the experience, I have been invited by a friend to go replan my life in Provence. If I don't, then it's God's will. Caring at home is not for everyone, but for those who can, it is one of the most significant life experiences there is. God bless you.