Relationships and family dynamics are complex and grieving is complex as well. The closest caretaker notices all the small (and large) signs of loss that those more distant don’t see or realize. If you are not living the reality you just don’t understand the physical and emotional struggle and need for support. After several years of caretaking of my Mom with dementia I STILL know that mentally I think of her as being more able than she is, because my lifetime tells me who she REALLY is underneath the illness. Each person adapts and grieves in their own way and avoidance can be a default setting. It is HARD to get outside yourself and serve the other person through the pain. And the reality is life is busy (and stressful) and priorities get turned upside down. Our culture has sterilized the walk towards death in a very unhealthy way, and we have lost the compassionate art of accompaniment as we have moved from the model of extended to nuclear families.
For you? Communicate VERY CLEARLY the needs - be specific! Send a list or schedule if you have expectations and ask people to sign up for whatever. Then accept what you do or don’t get, and focus on yourself and your own walk of love. Be realistic and do what you can, but be sure self-care is in there.
Comments regarding my situation that may or may not be helpful as you process your situation - None of us kids are the highly nurturing type which is a struggle as we navigate caring for our Mom (but I look at it as a struggle to acquire the virtues which I lack and know God is working with me). It is even more painful because my Mom was such a great and loving Mom. We often make the mistake of thinking God is asking us to do a very large thing, when in reality, he is only asking us for little steps, because that is what he knows we can and cannot do. I stop comparing myself with my aunt who is a nurse and has caretaking and compassion knitted into her DNA. My priest reminded me that each person’s relationship in the family is unique to them - I cannot know the factors at play deep within the heart (I have spent much time being angry that my brother (Mom’s favorite) is so absent). Convo’s with my spouse have been helpful as he reminds me that men in particular, will see that ‘things’ are being taken care of and so no problem exists that needs additional ‘solving’ or work. He also reminds me that despite my self-criticism and perceived lack of ‘skills’ for the situation, I show up. That is what love looks like. That is your own relationship, and stop focusing on others, despite how their absence wounds YOUR heart for the one suffering.
As the daughter of a Lewy Body Dementia mother....I must say this is the worst experience of my life. I have lived through the death of my two young siblings as a teen, the early death of my dad and later I got divorced from someone I dearly loved and was with 20 yrs….but this is even worse. I had a close loving relationship with my mom…flawed as she may have been. I have stepped up and I am the involved loving daughter who is POA and her caregiver/helper. Not everyone has the strength to watch a well loved parent become a stranger in front of them. My 4 yr journey has changed my retirement plans, and my living arrangements {sold my retirement condo to be near her}. I have needed counseling to adapt to this new normal. Try to not judge how others handle this stress. We are all wired so differently. Ask the kids to be more involved. Explain what you need. Then accept what they can handle. Good Luck.
Ask your adult children why they are distant and not supportive of you and their father now that you need them. We'd only be speculating. Do know that it's very difficult for children to witness their "indestructible " parents sink into the depths of dementia and get lost into another world entirely. It's easier to avoid that scene than to deal with it, honestly. Some of us have no other choice, but those who do may choose that option. We're not all as strong as we'd like to portray ourselves.
I'm sorry you're dealing with such a difficult situation in the first place. Hugs.
My older sister is "dying" which means in her long list of ailments she's going to keel over any day now. Last year she claimed the same thing and wanted me to bring my 88 now 89 year old mother to a family meeting so that we could "discuss family matters". My sister claims she has Parkinson's. But I am certain that this year my sister is going to claim the same thing and again want me to bring my mother to visit her. I know that the family meeting would be nothing but an excuse for my sister to point her finger in my face and lay blame on me for everything that she thinks I did to her and caused her so much pain. I didn't go last year and I'm not going this year.
I understand that your situation is different. But I'm not going to be a pincushion for my sister and neither is my mother.
Sometimes it's not a bad thing for them to stay distant! Lots of posts on here are about adult children who insist on making trouble but do nothing to help their caregiving parent.
Some just cannot handle seeing parents decline. Also, lives get busy and out of sight out of mind steps in. You might want to remind them that facetime exists. This is how I keep in touch with my grands. Prayers
This is so personal for all of us. For some people, it’s important to be at a parent’s bedside.
For others, it’s extremely difficult for them and this doesn’t mean that they don’t love or care about them. They would rather remember them when they were well.
I read your profile. I am so terribly sorry that you lost your son.
Wishing you peace as you continue on your caregiving journey.
by the way, totally different topic, but i noticed on your profile you say that you have 3 adult grandchildren (2 female, and 1 male). and the male is your #1. i'm sure you have your reasons for this, but it's too bad in a way, because it's so common for women to prefer their male, over female, family members.
For you? Communicate VERY CLEARLY the needs - be specific! Send a list or schedule if you have expectations and ask people to sign up for whatever. Then accept what you do or don’t get, and focus on yourself and your own walk of love. Be realistic and do what you can, but be sure self-care is in there.
Comments regarding my situation that may or may not be helpful as you process your situation - None of us kids are the highly nurturing type which is a struggle as we navigate caring for our Mom (but I look at it as a struggle to acquire the virtues which I lack and know God is working with me). It is even more painful because my Mom was such a great and loving Mom. We often make the mistake of thinking God is asking us to do a very large thing, when in reality, he is only asking us for little steps, because that is what he knows we can and cannot do. I stop comparing myself with my aunt who is a nurse and has caretaking and compassion knitted into her DNA. My priest reminded me that each person’s relationship in the family is unique to them - I cannot know the factors at play deep within the heart (I have spent much time being angry that my brother (Mom’s favorite) is so absent). Convo’s with my spouse have been helpful as he reminds me that men in particular, will see that ‘things’ are being taken care of and so no problem exists that needs additional ‘solving’ or work. He also reminds me that despite my self-criticism and perceived lack of ‘skills’ for the situation, I show up. That is what love looks like. That is your own relationship, and stop focusing on others, despite how their absence wounds YOUR heart for the one suffering.
I'm sorry you're dealing with such a difficult situation in the first place. Hugs.
I understand that your situation is different. But I'm not going to be a pincushion for my sister and neither is my mother.
This is so personal for all of us. For some people, it’s important to be at a parent’s bedside.
For others, it’s extremely difficult for them and this doesn’t mean that they don’t love or care about them. They would rather remember them when they were well.
I read your profile. I am so terribly sorry that you lost your son.
Wishing you peace as you continue on your caregiving journey.