My retired brother was never a caretaker but since he was the only sibling retired, he volunteered to take care of Mom with mild dementia who wasn't doing well in an assisted living facility. Within a couple of weeks, he started complaining about health issues and the stress of taking care of Mom. We tried being there for him more often, but didn't send Mom back to the facility because of her fragility. We thought our brother was stronger than he was, but here it is less than one month later, and our brother is no longer with us. Siblings and I are taking time off from work to be with Mom until we can figure out what to do. At this time, I would like to educate everyone that we can't take a caregiver's cry for help lightly. And, caregivers, don't feel guilty for demanding help! Demand it loud and clear!! Don't know how or if we ever will get over the guilt of our brother's death. Hugs to all caregivers out there!!
I planned my brother’s burial. It very hard. Grief is real. We grieve loving relationships that are gone forever.
Even in relationships and circumstances that are complicated. Everyone grieves. Sometimes it is grieving for what could have been.
Those that don’t grieve or block it out pay a price later. Please acknowledge your grief. In time you will find joy again. Those who leave this world are resting in peace and I believe they don’t want us to grieve forever.
Many things probably contributed to his passing, (like perhaps he had unaddressed health issues). It's best not to believe you did any wrong here, cuz that cud make your own health much weaker.
Pray for any failures you had in it, asking forgiveness. Sincere prayer will be honored, comfort will come.
Stephanie9 - if you don't mind me asking, what type of difficulties was your mom having in assisted living? Maybe your mom needs more care than AL has to offer, but that doesn't mean that bringing her home is the answer necessarily. If she needs 24 hr care, that is very draining for someone to attempt at home.
Learn from the mistake with your brother. Make the right decision for her and for you. Don't feel guilty.
I am so sorry to hear about your loss of your brother. It is a tremendous responsibility to take care of a loved one with memory impairment. It’s hard to control your feelings, no matter how many times you hear it but it’s no one’s fault. It was his time to go, God has another plan for him.
I was an Accountant working long hours and always complained about my long hours and stress, I had to make a very tough decision and I resigned from my a job I did love to take care of my mother with Vascular Dementia full time. I’m 45 years old and the only family member that can do this for awhile.
This is by far, the hardiest 24/7, heartbreaking job I have ever had. My beautiful, diligent independent mom went to child like behavior overnight due to multiple strokes.
It is rewarding in a way that I’m there for her all the time and she’s aware of it and it makes her happy and secure, however I have no personal or career life anymore, I feel guilty for even feeling bad about my losses. I do take my mom out to events and parties that we both enjoy, I never leave her home alone, so at least we both get out while we can.
I don’t know what the future holds, it’s going to be a long tough journey. I tried interviewing a few part time care givers but I haven’t found anyone I can trust, plus I can’t afford care now with no income coming in either. I’m living off of my savings until that runs out, we shall see.
Good luck to you and your family.
Prayers for your family to heal your broken hearts 🙏
My heart breaks for the passing of your brother💔 Our prayers & condolences to your family.🙏🏻❤️
Your brother departed this Earth, being there for Mom, siblings, family, etc..His angels’ wings are on, & he’s watching over all of you, guiding you through Life’s journey..
This message is so incredibly important for all us caregivers across the world! Prayers and love to your family🙏🏻❤️
I had been trying to manage my mom after her dementia diagnosis while she was still in her home and it almost killed me. After almost 3 years, I finally picked an assisted living facility to move mom into. I am sure I looked road hard and put away wet when we met with the AL facility and I was very emotional about it all. I will never forget them saying to me "you need to get back to being her daughter and let us worry about the care giving". There is no shame in getting help. They offer mom what I can't... I still pay her bills, wash her clothes and coordinate other appointments/needs, but it is a lot more manageable than trying to do it all while working full time and managing my own family, home and life.
Hugs to all of you who tirelessly take care of others.
I am sorry about your brothers death.
Sleep deprived, managing his meds/therapies/appointments/personal care, cooking all the meals, cleaning the house, doing the laundry, paying the bills... often no time for a personal shower... no visitors... no calls to checkin... when could I go to the grocery store? He can’t be left alone... When could I just sit in quiet and rest? He can’t be left alone...
I finally caved and found a facility that could best serve his needs, with a rested TEAM of people to care for him and ensure that he is taken care of. I’m now rested, smiling again and grateful for our facility family who are my eyes and ears so that I can work again and get a good nights rest!!
Never. Ever. Leave the entire responsibility on one person — it’s far too much to bear and the guilt that person experiences to admit it is huge. Build a team and make it work, or find a facility that can best serve the persons needs.
Praying you eventually find peace in loving memories of your brother.
My mom assumed the role of caregiving for my father in 2017 as he was diagnosed with Alzheimers. She used to tell me often that she needed a better support system. I would sometimes take offense when she would say that because I felt like I was doing all that I could for her while working full time and caring for my own family. After all, I called daily and got him on weekends at times to give her a much needed break.
My mother fell gravely ill, was diagnosed with pancreatic cancer, and died nine months later. I became my dad’s primary caregiver. I had quit my job and felt like I had lost everything. After a very short while, my mom’s words that she needed a support system echoed in my mind many times a day as I was at rock bottom caring for my father as his condition rapidly deteriorated. It was then that I had a lightbulb moment. What she meant was that she needed a network of people. Sure, it was nice for people to call and see how things were going but she needed people to go to the frontline of battle for her, people who really understood at the core of what she was dealing with. Something most caregivers will never have. Many go this battle alone and feel helpless, lonely, and depressed. How could I have helped more? What could I have done differently? These are questions many of us will ask ourselves for various reasons in this season of our lives. But we cannot go back. We must go forward and help others.
I come to this forum daily to find encouragement and inspiration. People can be honest about how difficult caregiving can be and sometimes it is not a pretty picture what people are feeling or thinking. I do not post often as I have been dealing with some major issues with my dad lately but I find a trust and bond here that feels like family. Hugs to all.
yes I was getting upset because this was getting harder and harder to deal with. With him doing less and less for himself. Siblings were sharing photos of all their travel. He ended up in hospice. I was the POA. The rest of the family was mad at me. They did not see dad THAT bad. Accused me of wanting him to die, ( that one statement cut like a knife.)
Dr said with pneumonia and a diabetic heal ulcer, he is not going to recover, because he will not be able to move. While in the hospital they had to put a catheter in him, he also ended up with a bed sore on his butt.
Even with the Dr telling my siblings that my dad had severe dementia and also a blank spot on his brain. My dad passed last 2 weeks ago.
Now I feel empty and alone, my sisters want me to go through his clothes and clean his room out ! I’m not ready to do that yet. They all act like nothing happened. I’m still raw and cut open. The last stage was very hard and few people to help you understand what is going on and what you might need. You really do not know what kind of questions to ask. My dad would get a high fever one day and would be fine the next. Or would moan in pain. I’m calling ALZ help line to keep an eye on him. A 1/2 hour later he is up and brushing teeth, which he had not done this before.
Yes I was also getting depressed and got meds. Feeling lots of anxiety. It’s still not over for me anyway.
I wish you well, please take care of your self. Peace
I am so sorry that your brother died. I hope in time you will be able to find peace. You are grieving. That is normal. You will be sad for awhile.
I wish the very best for you and your family and everything is resolved as best as it can be.
I am so sorry for your loss. It sounds like your brother cared for your mother just over a month? It is very unlikely that this is what killed him. When we talk of caregiver death statistics, it is usually because the caregiver’s bodies have been work down physically and by stress over a prolonged period. And I certainly don’t negate that it happens. I lost my own mother to it... she cared for my ALZ grandfather for 10+ years... so I have painful, first-hand experience with the phenomenon.
I just want to give you some comfort in knowing that, if your brother passed after a month, he likely had compromised health to begin with or something just “happened”.
Of course, the stress from caregiving didn’t help, but neither would have the stress from a job, or a rogue kid, or a jerky neighbor.
And sometimes, people just die. It is so important to realize that you cannot control that. I think that is one of the primary reasons so many of us end up in these hellish caregiving situations. We think that if we just care enough, love enough, please enough, we can control the outcome. That we can keep people “alive”, not realize that we are also sacrificing ourselves to that cause.
In your brother’s case, he volunteered to take Mom in because she was too frail for a nursing home? Nope, that is one of those “thinking you can control the outcome” situation. Her body is old. She can die with home care, she can die in a nursing home... not one of us can predict that. It was kind of him to take her in, surely. He can feel good about that. But it wasn’t required. He had a choice. And being where he is now, I would bet he realizes that and ok with it. He is doing better work now, with a whole body, no pain, no sadness. Try to remember that in your grief.
You need to discard the guilt. Just go forward with knowledge. It looks as though you are already doing that with your PSA on this board. It is good that you share your experience as a sibling to a primary caregiver. I commend you for that. Looking back at what we would do differently is good, as long as you just take the lesson and move on. Holding on to guilt that isn’t yours is just as unhealthy as continuing in a caregiving role past its expiration date.
Knowing this now, how will you go forward? It may be time to find proper care (in a place where the stress of caring for your mom can be spread out through a staff). You care make sure she is safe and you can visit her and love her, and let her time play out as it will. She may live 15 more years at this point (we had that experience). She may pass tomorrow. You can only love her and balance her life AND your lives as best you can without compromising one OR the other.
I hope this doesn’t sound harsh, but guilt is an ugly and destructive force. Important for civil society? Yes, in the sense that those who do wrong and injure the well-being of others care to mend their ways. But, in this situation, it sounds like you were all trying to do your best to manage an unwieldy situation. You were learning your way through together. Think of the good your brother did, the good times you had together. Wishing you the best... Hope
Caretakers are a special breed of people and some of us are just cut out for it.
I am sorry to hear about your brother, may he.. now rest in peace.