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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.

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B blannie Oct 2017 · Answer 1 · 2017-10-11T00:54:04.000-0400

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.

D domesticgoddess Oct 2017 · Answer 2 · 2017-10-10T23:15:31.000-0400

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!

T Treeartist Oct 2017 · Answer 3 · 2017-10-10T23:00:16.000-0400

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.

C Countrymouse Oct 2017 · Answer 4 · 2017-10-10T20:51:37.000-0400

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.

V Veronica91 Oct 2017 · Answer 5 · 2017-10-10T20:38:51.000-0400

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.

W Windyridge Oct 2017 · Answer 6 · 2017-10-10T19:27:49.000-0400

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

H HelperMom Oct 2017 · Answer 7 · 2017-10-10T18:34:05.000-0400

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.

T Treeartist Oct 2017 · Answer 8 · 2017-10-10T17:11:29.000-0400

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.

C CarlaCB Oct 2017 · Answer 9 · 2017-10-10T16:25:31.000-0400

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.

N NYDaughterInLaw Oct 2017 · Answer 10 · 2017-10-10T15:55:38.000-0400

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."

W Windyridge Oct 2017 · Answer 11 · 2017-10-10T15:41:21.000-0400

LTC is not hopeless. I don't doubt your criticism of the facility but it sounds like something that could be worked out with the staff. You and your sibs have done the heavy lifting for a long time and know perfectly your parents whims and needs. No place is going to be perfect. You may be setting a high bar that's hard to achieve.

Many of us come from backgrounds similar to yours and have lots of emotional baggage. Given your descriptions of your parents it's surprising that you and your sibs have done as much as you have.

I've found the only way to survive caregiving for my parents is to step back and detach a bit. It took me awhile to do this. We have to realize that bad stuff is going to happen with elder care no matter what we do or plan for. It's not our fault. People get old, they get sick, and they die. Even if I lived with my folks my mom would still have a fall as soon as I turned my head.

LTC may not be as good as the care your family can provide but it's the only way to save your family and have a life. You can't let yourself go down with the ship.

T Treeartist Oct 2017 · Answer 12 · 2017-10-10T14:35:06.000-0400

I wasn't sure my post would go through, but I see that it did. I suppose we are second-guessing placing our mother in LTC. Anyone familiar with Bipolar knows that medicine cannot be crushed and has to be taken in a consistent way to be effective. Since we took over the medicine years ago, my mother has not had to be hospitalized for mental breakdowns though she has been in and out for various other ailments. I have scheduled another family meeting next week, and we will ask for another care meeting also at the nursing home. Thank you so much for your suggestions and just taking the time to respond. I was crying last night as I read them. You asked for a question so here it is: What do you do when you can't take care of them anymore at home, but LTC seems hopeless.

T Treeartist Oct 2017 · Answer 13 · 2017-10-10T14:25:34.000-0400

I answered a question yesterday then had trouble logging on to post it, so I'll try again. Yes, there is guilt, at least on my part, though some of my siblings are so burned out that they say they are beyond that. As I mentioned previously, 5 siblings taking care of two parents sounds ideal, but when you add in our own disfunctions from being raised by a mother with Bipolar disorder and an alcoholic father, it is a miracle that we even function ourselves no less taking care of both parents. Our family caregiving system is breaking down from mental issues as well as physical on the part of the caregivers while my parents needs get more numerous. We are just a few days past from going through a hurricane and I guess that stress added to the stress of what I see as inadequate care in the nursing home that led to my mother's poor mental health just overwhelmed me and all of us.

M Midkid58 Oct 2017 · Answer 14 · 2017-10-10T12:11:17.000-0400

You are very lucky that all your sibs are on board and still working together for your parent's care. That is actually highly unusual.

Sounds like it's time for a family meeting and a frank discussion about mom and dad's care. You have worked as a team for years, and it sounds like some of you are getting tired. Do your folks share a room? Doesn't sound like it. Is that an option? It would decrease the cost somewhat. If not, well, you are already doing the paperwork and getting all the pertinent info.

What is your problem, exactly? Guilt over not being able to care for your folks any more? Feeling like the family isn't all on board? A family meeting with those involved would clear the air.

Vent away, we all do from time to time. I have 4 sibs, 3 are completely MIA and never see nor talk to Mother. Brother does the lion's share and I do what Mother will allow me to do. The other 3? They'll show up to the funeral.

Be grateful you all have each other and make the big decisions together. Good Luck.

J JoAnn29 Oct 2017 · Answer 15 · 2017-10-09T23:24:08.000-0400

You should be having a care conference for Mom. If you haven't yet, then ask to have one. If their conferences run 15min tell them you need more time. Write done all your concerns. Ask why Mom is not getting meds on time. Now a UTI is hard to diagnois in the elderly. But once found a antibiotic need to be given. Discuss the psych thing with them. You need the doctor involved since he makes the decisions. Make sure Meds are being given as her former doctor prescribed. If not, ask why a change. NH doctors tend to take it upon themselves to change things. A psych eval can be done at the home, request one. In a NH, the squeeky wheel gets the attn.

G golden23 Oct 2017 · Answer 16 · 2017-10-09T22:52:32.000-0400

Tree - with mentally ill parents we do assume the caregiver role very early in life and we get very tired. You and your sbs have made a Herculean effort for your parents. There comes a time to look after you. It seems that time has come. Sounds like both parents need care in a facility, and you and your sibs need a break. There is still work advocating for them once they are placed. Work on your mother's issues so she becomes stable in LTC. then look for a placement for your dad. Hats off to you all being able to work together.

T Treeartist Oct 2017 · Answer 17 · 2017-10-09T22:38:28.000-0400

I think you are right, though I wouldn't know where to start. Well, I just remembered that my church does counseling. I could start there. I have a grown daughter and son, but I don't want to burden them too much with all this. I know after reading all the forums that I am really fortunate that I have siblings who are involved and we are still talking to each other! Well, that is why my parents were able to stay in their home for so many years, but as I told my daughter once, due to my mother's mental illness all during my growing up years, I feel I have been taking care of her and now my dad all my life. Just tired.

C chdottir Oct 2017 · Answer 18 · 2017-10-09T22:28:26.000-0400

I think blannie puts it very well. Be as good to yourselves as you have been to your parents.

When I was getting stressed from caretaking for my Mom (plus other things going on in my life) I didn't feel like I could really vent to my siblings either because they were too involved in the situation and had their own problems. I found talking to a therapist extremely helpful. Just having someone I could talk to that wasn't involved relieved a lot of my stress. Seriously, I walked out of her office after one session feeling 50 pounds lighter. It might be worth a try for you.

B blannie Oct 2017 · Answer 19 · 2017-10-09T22:17:27.000-0400

I am so sorry you have to go through this. It sounds like you have a good plan to get your mom into a psych facility, which hopefully will treat her UTI and give her consistent meds for her mental illness. I would say don't make any big moves until you get mom placed and you can let the stress of that calm down. I'd say get mom placed, everyone take a breath and let things settle down before you make any big decisions. Caregiving is a stress on anyone. It sounds like you've done pretty well so far in dealing with both parents.

Need someone to talk to.

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