Need someone to talk to.

Follow
Share

I have been reading this forum for a year without becoming a member until today. My five siblings have been taking care of our parents for about 17 years with increasing levels of caregiving needed. They have needed 24/7 caregiving for the past 6 years. My sister moved in with them at this time and as the care bacame more intensive we have hired caregivers and also we siblings rotate the caregiving. In this way they have been able to stay at home. We all work together to assist financially as well. I know this sounds wonderful, and through the grace of God we have been able to keep it going for these many years, but the caregiving system is breaking down as we get older, more stressed, worn down and deal with our own mental health and physical issues. We made the decision to start the process for placement in a nursing facility. It happenend that my mother had to be hospitalized and from there went to rehab and has been in long-term care for about three months. We are working on the paperwork and the spend down for our father. I just came from the nursing home and my brother and I made the decision to get my mother admitted to the hospital psych ward. My mother who is Bi-polar is completely messed up with her medicine since going into the longterm care status. She developed a UTI and we know that they were not giving her her medicine properly. And because she is now acting so bizarrely, her roomate complained and they are putting my mom in another room. I do believe it was due to their inconsistency with the psych meds and the untreated UTI. Which brings me here today. I had no one to talk to. My siblings are so stressed that they didn't want to talk about it. I have fantasies of selling my house and moving in and taking over from my sister, but we are all so tired, I don't think the sibling caregiving would last too long. We knew that our caregiving would not stop once our mom was placed in a nursing home, but now we are second guessing our decisions and agonizing over what the answer is.

This discussion has been closed for comment. Start a New Discussion.
19

Comments

Show:
You grown children are a testament to the resiliency of the human spirit. Despite the trauma you all suffered, it sounds like you all turned out pretty d*mned well! My hat is off to you.
As a single person who is super independent, I've had to learn that others do care and when you reach out, the support you will get can bring you to your knees in gratitude. So continue to keep us posted and reach out here. It's an anonymous and yet incredibly supportive community of caregivers who have probably shared some of your experiences and learned from them.
(1)
Report

You have been honoring your folks. But you shouldn't be their doormat. At what point do you stop and take care of yourself? Instead of making yourselves sick, place both of them in assisted living, or nursing homes. You will all live longer!
(1)
Report

I am so grateful for all of your kind and wise responses. Yes, growing up in those conditions was at times absolute h*ll. My verbally and physically abusive father was not as destructive as my mother. When she was mentally well, she was the kindest, most gentle and loving mother, but when she got sick, (at least two to three times a year) she turned into someone who was not my mother. I don't want to go into detail, but it was like a Dr. Jekyll-Mr. Hyde. It was terrifying and so confusing. Amazingly enough, though our home was a battleground, we had moments of grace and calm and I believe that is what saved us children from becoming totally screwed up. My father was in the military and was also a musician, so we learned to play music and sing and we did this often. And my mother had this amazing ability with languages and she taught us to love words. So we had some respites in between the chaos and violence and police coming to our house. Through the grace of God we survived and got advanced degrees and functioned in the world though one sister has been diagnosed Bipolar and schizophrenic with suicidal tendencies and the rest of us function just under the radar of the psychiatric community. Yes, we consulted an elder care attorney because we knew that we were over our head dealing with Medicaid and placing two parents. My father had a stroke 22 years ago, and though he recovered, he aged fast, mentally and physically, and at 87, looks like 97, and is only capable of feeding himself and brushing his teeth. He is still verbal, and gone is the raging alcholic which has been replaced with a very grateful sweet old man who understands we can do no more. I heard a doctor tell my mother when she was 50 that she would probably not last very long due to the stress and trauma that her psychiatric breakdowns had on her body and at 86, she too seems as if 10 years older. Thank you for allowing me a place to tell my story.
(1)
Report

I agree - you have all done *so* well to stick together and not let your parents' incredibly stressful situation tear your sibling relationships to pieces. More power to you!

I sympathise with the frustration of basic errors being made in what is supposed to be a skilled facility. But that in itself doesn't make care at home any more possible than it was before (and it wasn't). Nothing for it but perseverance and advocacy, and tightly crossed fingers that they'll get to grips with the routine.
(2)
Report

Treeartist don't second guess the decision to place Mom in a psych ward, that is where she needed to be to get the medications corrected and possibly changed. Some of the bizarre behavior could be dur to the unresolved UTI. They do affect the elderly differently and may include unexpected behavioral changes usually for the worst. Whatever you do don't take her home again, you are all way beyond 24/7 caregiving after 17 years.
People start out with best of intensions but it often quickly turns out not to be the best situation for anybody.
Being raised by a bipolar mother and alcoholic father was not the best upbringing for any of you. infant some of it was probably absolute h*ll. You all deserve medals for the work you have done so far but now is not the time to take on anything new.
You mentioned the spend down to get ? Medicaid for Dad. Why don't you get him admitted as private pay i the beginning and once his money runs out transfer to medicaid. i believe it takes a couple of months for Medicaid to be approved but many nursing homes if they accept medicaid will let him continue Medicaid pending. If your sister has somewhere else to live then the house can be sold and the money used for the care of both parents. if Sis has no where else to live and has lived there for a specific length of time Medicare may allow her to remain for the rest of her life and then take the house. Once dad is placed no one else would be allowed to move in but Sis has already established residency. I hope you have consulted an eldercare attorney.
It certainly sounds as though there is a light at the end of the tunnel with all siblings working together. so hang on to that feeling of euphoria and come back here anytime. There is usually some one awake.
(2)
Report

Tree Artist, take some deep breaths, think things through. You'll get through this. Stay in touch.
(3)
Report

I can empathize with your situation, it is very painful to go through this with an elder, especially when behavioral/psychiatric issues are involved. I have found it very helpful to talk on the phone with the Alzheimer's association crisis line, 1.800.272.3900. They have trained counselors on call at all hours, 24/7. I've never had them take more than a few minutes to call me back if a call-back was needed. They are caring, knowledgeable, and can give you practical advice. Best of luck and God bless you and your siblings for caring.
(3)
Report

I reread all your answers and had a visceral response of calmness throughout my chest. I still have the same issues, but for this moment, I feel ready to face them. By nature, I am a loner (hence my hesitancy to join and merely read on this website for a year), but I see how necessary it is to reach out for strength and hope from people who have experienced this journey.
(6)
Report

Welcome, Treeartist. I'm sorry you and your family are going through this incredibly stressful time. It sounds to me as though you are having a hard time letting go of your caregiving role even though you know you and your siblings can't manage it any longer. If you had confidence in the quality of the care provided by the facility, it would probably be a lot easier to let go and trust that your parents would be cared for. The fact that your mother is having such a hard time adjusting and developed a UTI on top of it seems to be making it very hard for you to have confidence in the decision to place them in care, even though you know it's necessary.

You sound very torn. It's certainly understandable. I imagine it's hard for anyone to give up the caregiving role under any circumstances other than the death of the loved one, and even then. You get so used to carrying that burden, and so nervous about letting go of it, I'm sure.

I think you've heard a lot of good suggestions from prior posters. I can second chdottir's suggestion to talk to a therapist. Caregiving brings up a whole lot of issues, especially within a dysfunctional family (I know). I'd expect letting go of caregiving duties to bring up just as many, if not more. Good luck! Come back and vent all you want. You're among friends here.
(0)
Report

Come here to vent. I urge you to not vent to your children. My father-in-law is venting to my husband about the death of his wife and it has placed a tremendous emotional burden on my husband whose grieving the loss of his mother. Also, and perhaps more importantly, we are allowed to write things on this forum that we could never say to our loved ones. Getting "heavy" feelings off our chests is essential.

And I agree one hundred percent with what Windy wrote: "We have to realize that bad stuff is going to happen no matter what we do if [sic] plan for. It's not our fault. People get old, they get sick, and they die."
(4)
Report

This discussion has been closed for comment. Start a New Discussion.
Related
Questions