My mother is 90 and has some mild dementia and bad balance issues and has recently been having even more trouble caring for herself due to a bad knee. She called me over and over and over again, begging me to take her to a nursing home, as she no longer wanted to live alone and realized she couldn't take care of herself and was scared of falling. I dropped everything I had on my plate - including taking care of my own health needs. I cancelled two important doctor appointments, including one physical therapy appointment that I had waited for for six weeks. I jumped through every hoop imaginable in order to visit facilities, then made numerous trips to her doctors office to get forms done and re-done because of their errors. I did everything I could in order to get everything taken care of ASAP and all the while, she was calling me and begging, "Please take me today." I haven't been sleeping because I've been so worried about her being on her own and I've been worried about leaving her at at a facility, too. I brought her there today and filled out tons more of paperwork, wrote the check for the deposit and first month's cost and gave them my credit card number to have on file and basically moved her in. After only being there for about four hours (with me there much of the time), she went into complete panic mode and insisted on going home. She refused to stay for even two weeks to try and get used to it. After all the begging and pleading for me to get her there right away, she said "I just didn't think it would be like this." So now we're back where we started and she can't care for herself properly and I feel like giving up. I see no end to the relentless crushing pressure of dealing with her and with my siblings, who all have varying opinions of what mother needs and who are quick to hurl insults and barbs at each other such as, "I do more than you do to for Mother - you do nothing." It's exhausting and it's taken a toll on my daughter and my marriage. I have no future and no hope as long as my Mother is alive. I have a mental disorder and so does my 22 year old daughter. In other words, we have enough problems of our own. Our lives have been consumed by this and I'm at the breaking point. I want to move far, far away, but my husband refuses. If I can't escape, I think I'll die. My parents weren't all bad, but they abused us when we were growing up and as a result, my siblings and I all still suffer keep emotional scars to this day. When I expressed my disappointment to Mother today that she wouldn't even try it for two weeks after begging so hard to be brought there to live, Mother said, "I took care of all of you for a long time. I said, "Yes, Mother, you took care of me for 19 years. I have helped take care of you for 22 years. I feel like we're sort of even. When does it end? How much of our bodies, minds, hearts, and souls do we owe our parents? And how can I escape, short of suicide?
I always felt I had to drop what I was doing and drive my parents to every store in the city. That was until my psychologist told me that my parents were the ones that made the choice to continue to live in their single family home instead of moving to a retirement village.... thus, my parents need to take the responsibility for their choice.
I dread the time that if my Dad passes on first, there is no way my Mom can live in that home, she's scared to be alone.... having a stranger come into the home to help her I know she will resist as my Mom doesn't trust a lot of people. Dad on the other hand would be happy to live in a tent in my backyard, so I know getting him into a retirement village will be simple, more people to tell his *stories* to ;)
This week there's a woman from the Ministry of National Health visiting and asking the residents if they had any concerns. Yes, said my demented mother, she didn't know where the money went from the sale of her house (she was updated all the way) so I was summoned to appear at the NH to show all paperwork and where her money was and had gone. I was made to feel like a common criminal. I have POA and have always preserved her money, living below the poverty line myself for the past five years.
Once assured about money she went on and on about her furniture, how lonely she was and so on. Well, she stays in her room, in bed or a wheelchair 24/7. I told her I was not responsible for her happiness, neither was I responsible for finding friends for her, she had to go out the door, get into activities and make it herself. Of course she won't. The activities directors will be told to go get her for activities . She may go once, if at all, but even if she does it will be a one off because "I don't like it" and they will eventually stop trying to include her so she will stay in her room with the door closed until she dies.
I've done all I can. Tonight I'm pretty much in shock. I haven't eaten at all today, don't want it. Trained by Madam from a small child to put up and shut up, it's hard for me to let go. I really need to sob my heart out but I can't do it yet, it just won't come.
My precious animals are taken care of and maybe soon. Tomorrow is another day but I won't visit. I';m done.
And lastly, seems to me this confusing period can go on for a couple of years, for the process of change and identifying needs, does take time. I understand our struggles to preserve our own lives, but there may be some relief from trying to plan to manage through a 1-2 year process of questions, rather than trying to decide all soon. But with that time, you can explore facilities, learn about sib preferences, maybe find some ways sibs can help that are different from care help or planning. I went through a very difficult period of about 4 years, when I kept trying to support my disabled brother's independence, and take him on overnight trips, but it became really difficult to do all the things he needed and eventually I realized, after several failed attempts, that he needed more care, and I could leave him to a nursing home. The process of setting it all up matters - it can help to include regular time outs for you, times with just no planning, just meditating or extra relaxing, and be good to yourself, so you will feel proud and satisfied of this process through major challenges. All the best!
There was an older lady there with a bald head - I imagine she'd been through chemo. She asked me for help because she'd soiled herself and she used the call button but no one came. I asked for help for her two separate times, and then finally when I saw her sobbing across the hall with her face in her hands, I asked for help for her a third time. It broke my heart. I guess the staff was doing their best - they've had a flu outbreak there and it was the nighttime hours when we arrived (they didn't have a free bed until then) and I guess they were just overwhelmed. But it was hard to leave my mother there when it seemed so hard for the lady across the hall to get help.
The ironic part is that one of my sisters who has been so mean to me actually came to the hospital this afternoon and she stayed and went through the whole process with me. I'm so glad she did because I truly don't believe I could have made it through this without her. My brother left and went back to his mountain home around noon today and even my husband just went ahead to church tonight as he regularly does on Wednesdays - it never even occurred to him that this might be one of the hardest things I've ever had to do and that I might need him to go with me.
I don't understand men at all. It reminds me of that movie, "Steel Magnolias," where the woman's daughter is dying and all the men in the family (the daughter's dad, husband, and brothers all had to leave the room). Only the women stayed until the bitter end.
My father died quickly and without warning and while I know it's hard on family not to be able to say goodbye, I think it's so much better than watching a family member slowly losing her mind and having to trust strangers to assist in caring for them. Maybe tomorrow will be better.
All that said - the nursing home care does handle some things reliably, and that is what they are useful for. There will be staff awake all night, and they do go from room to room. They do need or expect people to have to wait, and that's not usual in families, but it is not fatal, for the person is lying down and can rest., it is just a change. Sometimes patients have to make a scene to be listened to, but when they do, their needs will be documented, and they will get to know your mom's style of asking and will meet many of her needs.
As family, you can demand to see reports and ask them to be more specific. Some medications make anxiety worse and that can sound immediately demanding, and staff are used to such demanding requests, and nobody can run and answer every craved call, so many are left to wait, and it sounds awful, to any caring person. I dislike medication for that reason, to me, they exaggerate some feelings and communications, like an alcoholic. They anesthetize but also distort. At the same time, many anxiety calls can't be answered immediately, and you saw yourself, giving your mom an explanation about how the catheter works didn't do the trick - a few minutes later she asked again, so running to help doesn't always help - you actually want someone just to sit there a while, so the person can calm down. She doesn't need to understand the catheter for it to work, and staff will also explain, that it's already working. So, patients do learn te routines, and how to navigate.
But no one, not even you, can be available 24/7, so care must be spaced out. Your mom will find it difficult, but I hope she will also survive it and find that she is actually more able to adjust to new situations than she or you would expect. And there are many caring people there, not all of them professionals - many sub staff listen, comfort and help. And when you are able to get your own rest, you will find you are able to be more helpful, rather than less. You will get a better feel for it all over the next week.
That will give you a break and time to ask questions, and even to look around for alternatives. Some families hire a personal aide to stay with their family member in a nursing home - someone to come immediately and reassure.
So I just send you a prayer, and encourage you to get your rest and watch the situation as best you can, and tell your husband and ask him to help you watch it closely. Talk with staff about it, and keep us posted here, and see what you think after a little bit. I taught my sister, when she was in a mental hospital, how to improve her care by saying thank you often - that does work, for arguing patients are not always understood - but family can argue for them.
And the frustrations with the men not being involved - sorry, I can jump on that one quickly, for I do think we've allowed men to stand back from care process, but I husband to go with you, even once, or once a week - something specific. It's easy to give up when it doesn't happen, and they don't sense the need as easily as you do, but if you ask and say it's important, they will try to show up.
I found it surprising and disheartening when I ran into the difficulties in explaining my worries to the men in my family, when I shut down my brother's apartment, ending a way of life that had involved him as an active person nand me, over 30 years as I managed his care in the community My other brothers could not understand, or know how to respond to my fears and loss.
What they understood was that my brother needed more care than family could provide, even if they didn't understand all the details and losses as I saw and felt them. They saw the glass as half full, while I was caught up with the losses, some of those my own at the changes, and I resented the lack of support.
But it is now 6 years later. I found the people who work in the home are often caring and they provide supports on a daily basis. I found that my brother does turn to them, and they rise to the occasion, and listen to his concerns and his interests.
When you think of your mom's interests, other than just being with family - is there any activity that she has enjoyed over time? Can you make a list, for the staff in the home? Make a chart with some photos? Make a broad timeline of her life, and bring it to share with her, and find a place to put it with her in the home? This could help both of you face that getting older is very sad, but you remember her and value her, and it helps some of the staff there to notice who she has been as a person. They also are individuals who have lives, and there will be moments of joy and fun - it is not all misery!
And yes, do talk with others outside your family - anyone I think, for the aloneness is painful, and sometimes family are not the most able to meet our fears or pains, we can overwhelm them, or they can run in fear of overwhelm. But others can offer an ear, a story, a shared grudge, a laugh. I put my brother in Maine, for he did better in a country setting than near me - and I loved staying in the motels as I went to see him, and I complained to the motel staff about my difficulties, and many understood, for they had dealt with the healthcare system, or had vulnerable relatives, or were just around, when I wanted to vent, and they cheered me on in their own ways. I liked that.
It took a long time, but I learned in the end, that the nursing home did not mind my hollering at them, they assumed this was my role, and they tried things I suggested, and found that they helped with my brother. He grew more familiar and had his favorites, and even over time when staff changed, he always knew some others who cheered him on - it can be good to involve more people in the many challenges of care.
I know about the losses, but if you seek people to share them with, not put all the pressure onto your own family, you may find that you are surviving and so is your mother, and broadening the ways people help both of you. Keep posting here, no matter how it goes! All the best!
Glad to hear you explain a bit. I can see how you are facing questions in different settings - both for your own therapy and a change in therapist - and changes often bring up new fears and questions - tiring and worrying!
I left a therapist last year, after lots of progress for two years, but later I was dealing with new issues and felt she didn't keep up with my changes, but even though she agreed with my choice to stop - I wondered.... maybe she was actually sick of me, and glad to see me go?
I think questions around changes are normal and natural, part of our mental chatter, and we need to remember that change is not easy, and yet sometimes it's healthy. I like some of the AlAnon literature, which supports people in focusing on our own self care, and doing our best.
Maybe you can tell your therapist that worry about loss and rejection - I made an arrangement to keep meeting my therapist once a month during the departure process, and was relieved that she was glad to agree.
I've grown by struggling on my own, and looked for new ways to break down my wishes and find helpers (I joined a writing class, which has helped me enormously, as we all share our writings, and often sound great! Helped me feel part of the human race of community people.) I also got that therapist when a different one said that she would be better for me, and she was, so pray and believe in yourself some, that you can sort out answers as you go along.
I'm not surprised if you needed extra time to rest and sleep - it's tiring to go through questions and fears in the middle of changes, even if your husband thinks you should be feeling more "happy". Tell him maybe you will, when things have settled - in a month or so!
One thing my past therapist said that helped me, when I continued to feel so afraid of my apparent failure to find a new career and she said, "why not designate the next year as an exploration time?" That helped me a lot, to see the ups and downs as part of the process, not ends in themselves. You are not confined to only those two therapists - even when you see new ones, you can keep checking on the internet, and follow leads, and see if something else seems good - just give the new one a chance, and don't be too hasty.
Lastly - lots of different staff in the healthcare system do say very different things. Don't you think you are losing your mind: it's THEM!! The system is often crazy! :)
The system is fragmented, and I'm glad I've learned to take with a grain of salt the words of those who are negative, and have learned that different ones you reach at different times, give different information and ideas. It is far from perfect, but I agree with your husband, in the home IS a place where they are watching your mom's sleep and food and care, so you can take the breaks you need, and after a month or so, you will feel more familiar with what they are offering there, and I hope you will find some staff who are more helpful than others! Notice the ones who seem wise and calm and kind for you, and ask them about whatever questions come up from the others.
Sending you good wishes, a cyber hug, and a prayer as you go through this.