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Should I Go Home to Be With My Dying Parent/ Loved One With Dementia?

My dad told me a few days ago that my mom has gotten much worse and is not taking any food and very little water. She has become mostly non-responsive, but is not in a coma. It looks like she might be actively dying, but we have no idea if she has days or weeks left. I then had to decide if I wanted to and could go home to be with her.

I want to be clear that this is just a thought process around the very end of life. If we want a relationship with our loved one, then truly the end of life days are not as important as the years and months leading up to that time. People who are dying say that they would rather see people before their last days, than only have people come when they are suffering or cannot respond. Visit as often as possible for you before your loved one is in their last days.

In trying to make my choice, I talked to other people, and even searched on the internet because what I was really looking for was something that said: "If your loved one looks like x or does y, then you have z number of days until they die."

Well, no answer like that exists. However, there are still ways to make the decision. Here are some of the questions to consider in deciding to go be with your loved one for their last days.

What do you want ideally? Ideally, I want to be there when Mom dies to help her make that transition and I want to support my father and siblings. So, if that is my ideal, can I make that happen?

What would you regret? If you are having a hard time answering the first question, ask yourself this one. If you are not with your loved one when they die, will you regret it for the rest of your life? For me, I would not regret it if I did not get there, but I want to be there if I can get there. I have been there to help guide many people into the next phase of life/existence, and I just want to be able to do that for my own mother. This is why mainly I was looking for an answer that would tell me exactly how long Mom has to live because I don’t want to miss it unless I have to. Now I know that I can never know how long anyone has left, no matter how hard we try to predict it. So, in some way we always need to be okay if we cannot be there. Other things might be you would regret not being with your siblings at such a time and that might be why you would go home.

Who are you going for? Are you going for your loved one, for yourself, or for your parent or siblings? Maybe you have visited a lot and feel okay if you are not there, but your sister really would like you to be there with her as a family.

Why do you want to go? If there is a "should" in your answer, that is not a good enough answer. If we follow "shoulds" then we are operating out of a place of fear, obligation, and guilt, and none of those things contribute to making a healthy decision. You need to weigh out the “shoulds” with answers to the rest of the questions in this post, especially if the “should’s” are coming from other people.

Can you balance what you need with what other members in your family need? If your parent is dying, do your siblings or other parent need you there for support and to go through this together? Does the rest of your family, like your partner and kids need anything from you at home? In the end, all of the people that love you will want you to be healthy in body and mind, so brainstorm on how to get your needs met while meeting as many of their needs as is reasonable and possible.

What does your loved one want? I think it is important to talk about what you want in your last days even at a very young age. Anything could happen at any age. Some parents do not want their kids to see them very sick or hooked up to tubes. If your loved one said they did not want you to be there, maybe don't go. You can always have someone else, probably hospital or hospice staff, read a letter to your loved one from you or play music you have put together for them. You can still be there without physically being there.

Is your loved one able to interact with you? For some people this question really matters. This depends on your belief about the dying process, the soul, and who a person is. For me, I always sat by the bed of patients while they died in the hospital when they had no family and friends present. I feel that people know a loving and caring presence is with them even if they cannot respond and I like to be there to help people make this sacred transition. So this question was not a factor for me, but it is perfectly fine if it is a factor for you. You may have said your goodbyes already and not feel a need to be there when they die. Interaction does matter to the person dying, so visiting in the months and years before death would be the best route to take to help meet their needs.

Can you afford to go? No loved one wants you to go into debt due to their death and any other travelling for a funeral. Some businesses might also not allow you to go back and you risk loosing your job. Also remember though that friends and family are often willing to help out if you need it. Unfortunately, many airlines have discontinued their bereavement rates.

Is it safe for you to go? This may not be applicable to many people, but for some it is. In the hospital I saw some families act abusive, either mentally or physically to each other, during a death. Don't go if it is not safe for you. Your loved one would not want that.

Is what you want to do the right thing? YES. Whatever decision you make is the right one because you made it with intention and love. We may not be comfortable with our decision later, but we did the best we could in the moment and that is all anyone asks for.

I hope these questions help you think through your decision when the time comes.

So, what did I decide? I decided that based on the amount of nutrition Mom is taking in (almost none,) that she probably does have days or weeks left unless something major changes. I always wanted to be there for her journey out of this world and it is Christmas break, so we have the time, and we found tickets we could afford. We just got home and are spending lots of time with Mom. If she dies while we are here, that is the ideal. If she gets better (which just means back to being able to take in food and water), and stabilizes there again, we will go home and wait. I am okay with the fact that if she does not die while I am here now, that I may not be able to afford to get back again. That is okay because I know Mom will not be alone and I know I can support her and my Dad and siblings no matter where I am. The other day I used FaceTime to talk to Mom and see her. Technology provides us with many ways to be present.

I know that no matter what happens, at least I am able to visit with Mom and Dad again, and that is just another connection I get to have with them, which is a blessing. If you are in the middle of such a decision here is a prayer that I hope can help you: Spirit of Life, Source of Love, May the Universe and my heart guide me in making this difficult decision. As I sit silently and reflect, I call on my own inner wisdom to speak in my heart. No decision is perfect, but my decision will be right. Right now, right here, right for this time. The soul-to-soul connection I have with my loved one lasts forever. May they feel my love and care, no matter where I am. May I be at peace with my decision, and may this transition go as well as possible. I pray in gratitude for the life I have need able to share with my loved one. Amen and Blessed Be.


Rev. Katie

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