Follow
Share

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!!

This question has been closed for answers. Ask a New Question.
Find Care & Housing
I am so sorry for the loss of your brother. Please do not be too hard on yourself as you cannot change the past. It is very hard to know all of the right choices to make and what the outcomes will be for the caregiver or loved one. Thank you for raising awareness to caregiver needs oftentimes an overlooked topic of conversation.

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.
Helpful Answer (16)
Report
Chole18 Oct 2019
You are so right. I was the sole caregiver for my dad, for the last 2 yrs I emailed,text, sent videos, about dads decline. I thought I was shouting from the roof top. But to my brothers and sisters said nonot really. My dad was declining (vascular dementia)he was hitting the last stage of dementia, not knowing he wet himself, started to eat less, not talking as much, sleeping more, not wanting to shower, not interested in anything, trying to get his attention to look at me, was very exhausting. He walked out of the house once in the rain. The police brought him back. I felt bad because I did sleep with one eye open. That night he made his great escape. Two days later he got pneumonia.
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
(3)
Report
See 1 more reply
No single human should ever be expected to bear the whole load of caregiving. I did it for one year on my own — with no help and very minimal offers for help...I needed to get out of the house for my own sanity and well-being! The help I eventually had was paid for and expensive, but a necessity for the both of us. Friends and family who’d been around when my dad was ‘healthy’ and they could get help from him no longer came around because the stroke left him without words and unable to ambulate as he used to... he couldn’t write, because he lost use of his dominant side... all of these things compounded when I wasn’t able to sleep through the night because my dad wasn’t sleeping through the night either.

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.
Helpful Answer (13)
Report
NeedHelpWithMom Oct 2019
Thanks for expressing this viewpoint. I was expected to do everything. It caused so much heartache and conflict.
(2)
Report
See 1 more reply
Stephanie,

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
Helpful Answer (9)
Report

I am so sorry for the loss of your brother. He must have been a wonderful brother and son. I lost my brother to colon cancer a few years back. I would tell him often how important it was to have a colonoscopy, but he would get upset and irritated with me so I dropped the subject. I found myself thinking I should have done more for my brother, and before he died he told me he wished he listened to me. It broke my heart, I too wish he listened to me, but we can't blame ourselves, people make choices that are out of our control, your brother made a choice to take care of your mother, and his death was not your fault. He probably had health issues previously. I hope you find peace in fond memories of your dear brother. My thoughts and prayers are with you and your family at this difficult time. Hugs to you!
Helpful Answer (9)
Report

Caregiving is no joke an sucks the life right out of you...not to mention time, jobs, finances, etc.  Additionally, your dealing with the fact that the person you once knew is no longer there.  At least that is how I felt about my mom and dementia.  I begged my brother for help and he refused.  I no longer let that eat at me like it once did, but I will never forgive him for it.  I've just moved on.

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.
Helpful Answer (9)
Report
NeedHelpWithMom Oct 2019
What an honest and sweet reply. Glad you placed your mom. You deserve a life of your own.
(2)
Report
See 1 more reply
Wow, a whole family and 1 person with the front line responsibility. Where were the others? On vacations regularly? Work... Making money (what pct did the front line get?)? Their family doctor appointments? Who relieved the person on the front line long enough to even think/plan an appt? Well, as a family caregiver you usually love that person so much.... Every day you are in crisis mode. You spend every though, every minute unselflessly saving them. So don't put the neglect on the brother.... He was in a fight or flight situation. Sorry, but i just spent the most rewarding year of my life loving and caring for my mom. She is now in heaven. Now 2 weeks later, i am diagnosed with breast cancer. Got to admit looking at pics of vacations and events of the family members I begged to help me, does hurt because i missed time from my grandkids. Hopefully God will give me a few more years to spend with them and go on vacation and take pictures to post. And the precious memories mom and I shared was worth it all a thousand times over.
Helpful Answer (7)
Report
Pasa18 Oct 2019
Debgehart, I hope you find healing and precious time with your grandkids. I am happy to see the picture of others but I don't react well when there's a gratuitous message of prayers and well wishes without an offer to do something. You are right. Everyday of caring for another when there is a high need is like being on 24/7 alert or in crisis mode.
(0)
Report
Stephanie,

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.
Helpful Answer (6)
Report

I can feel myself getting sicker every day and it scares me that this is going to be me. My blood pressure is 178/112 today...constant chest discomfort...severe headaches with blurred vision. I’m too overwhelmed and don’t know what to do. Called a crisis line today and was told our conversation went over allotted time. Left a message for my sister who never called me back. I feel so bad all the time. I’m so sorry for your loss. You did the best you could. We shouldn’t have to sacrifice our lives to make someone else happy.
Helpful Answer (6)
Report
peace416 Oct 2019
Karinslife: Have you seen your doctor about your BP? Also, ask your MD for a referral to a therapist for counseling.
(3)
Report
See 3 more replies
I know my limits, and I would never be a in home caretaker, makes no sense to me as I am not clinically trained.

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.
Helpful Answer (5)
Report
anonymous912123 Oct 2019
Should say "Are not cut out for it"...there shouldn't be a time limit on editing a post, this site is not very user friendly.
(2)
Report
Stephanie9,

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🙏🏻❤️
Helpful Answer (5)
Report
Stephanie9 Oct 2019
Thank you for your support.......
(0)
Report
See All Answers
This question has been closed for answers. Ask a New Question.
Ask a Question
Subscribe to
Our Newsletter