Even with caregiver help, it’s been tough. Friday one of my mother’s occupational therapists told me she had asked nursing staff if my mother had been receiving any visitors. After being “on” since 11/14, I took time “off” to recuperate. My mother did not respond well. She refused to go to physical therapy and instead packed her bags. After a nurse called me, I raced over with my father to calm her down. Tough. I’m wracked with guilt.
Guilt Rears Its Head
About the Author: Kitt O'Malley
Bipolar Writer & Mental Health Advocate
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suggested mind frame shift, it is not your responsibility to recuse either of your parents; that puts you into a wonder woman complex. that’s a heavy burden to carry. instead, it is your responsibility to offer your parents all the love that you can this day. because of life, you will not be able to be everything for parents and that’s okay. too often you likely feel like that is not enough but it is all that you can humanly give.
True. Wise advise. Thank you.
on that sucks! i understand the impossible nature of what i am about to ask since i would likely respond in similar way but, don’t be too hard on yourself. focus on the days you have been there as oppose to the days you haven’t. just because someone’s idle chatter set your mom off then you does not reduce the excellent work and the grief you feel about your mother’s going ons. someone who infers you are not doing enough so is completely clueless.
Thank you.
My dear Kitt, please forgive my late reply! You know I think of you often; our close family friend who suffered a concussion/stroke and was expected to recover has gone in the opposite heartbreaking direction; he is not doing well. We’ve been helping the family out by caring for their 2 kids etc. I took a Twitter break and I haven’t read any blogs for days now except yours. Sending you love and strong hopes that your guilt has subsided, in part, with the support/insights of these wonderful comments…..sending you love & strength as always…..XOXOX Dy
So sorry Dyane. That is tragic – truly tragic. My thoughts and prayers are with you, your family, your family friend and his family.
Thank you so much, Kitt!
It’s not realistic for you to be the only one shouldering all this, all the time. Shame on that OT for implying that. You must continue to take time for yourself – if you aren’t well, you are no good to anyone. Of course, feeling guilty comes with it but you have to ignore it.
I hope you can benefit from my experience of strokes, I’d like to share things with you because we had no input with my mum and a little background knowledge might have saved us from a lot of mental anguish. My mum, even a year on from her stroke will pack up her belongings when she has bad days. I don’t think she knows why she does it but often, it’s when a urinary infection is taking hold. The elderly stroke survivor is prone to urine infections and they can induce all kinds of emotional responses. In my mums case we would see a range of emotions; from tears to full on meltdowns – sometimes even physical attacks. It’s important to recognise that it isn’t your mum doing this to make you feel bad because she’s not necessarily in control of her responses. Strokes can bring on all kinds of confusion. It could be that your mum is tired, or simply having a bad day. I do think it might be worth asking the medical staff to check for a signs of infection, just to be on the safe side.
Keep being kind to yourself.
Thank you.
Don’t blame yourself….you have to take care of yourself first before you can give anything to others.
Difficult to do when both my mother’s stroke rehab and my father’s memory care are calling me to come rescue them as my parents are trying to escape. I want both my parents to be together, but my mother has not adequately recovered from her stroke.
What we want and what life allows us to do are frequently two different things. Focus on what you can do?!
“Can do” – good advice.
I forgot many Sr. Centers and various places have caregiver meetings. You would have to get help or go after their death. I’ve heard it’s a great support when you need it.
M
Thank you. Time for me to attend a caretaker meeting.
Hi Kitt
I cared for both of my grandparents at home with hospice. 10 years of my life passed me by. I wanted to take care but when I reached the head banging level, help from family would provide a day or two relief. My granny had two strokes leaving her with dementia. I had feelings of guilt while there and for years after. I believe it’s in our caring nature. I wanted to strangle gramps some days, I have breakfast on table , he doesn’t want it and expects the replacement now. That’s when I knew just a few hours would help.
Your in a tough situation. All you can do is your best and tune out the chatter. Many times my granny would say mean things but I knew she loved me. I focused on my love. I also read most of the Bible many times. It’s really the reason I became an Ordained Minister. I’m here if you need to chat. msandorm@verizon.net. I have 4-6 old post about the process of watching them dying. If you would like to see I can send over.
I don’t have the answers, just my experience.
M
Thank you. Could you please post the link to the post here? Greatly appreciated.
Hi Kitt
I’m not that say on WP tools, they keep changing. Email me and I’ll attach.
One thing that helped my granny was making her a little photos album with photos of gramps and her long gone dog. I was able to tell when she was getting anxious and I’d pull out the photos. I’d say Oh, let me get the photos you wanted to see. It helped until close to the end. It’s in one of the post but it’s something easy to give you a mental break for a few minutes.
🙂
Oh god, it sounds like you are having a really tough time of it. I am so sorry. I hope things get easier and soon. So hard to have your mom and your dad in different places. I hope your sister can come back to help. My mom was in the ICU for 6 weeks and never came out. Just help as much as you can and take care of yourself. Hugs.
My sister is moving out of state. So I’m on my own.
Sorry to hear that.
So very unfair. You have a family, and a life of your own. Caregivers get no respect, only guilt. I’m so sorry, Kitt. Try not to take this all on by yourself. Yikes is right !! Thinking of you.
True. My father wanted us to drop everything and move in and care for them (all while he drank so much every night he would fall down the stairs).
I’m sorry, it sounds awful. I agree with Laura P. Schulman, MD, MA, you need to take care of yourself so you can take care of them.
Thank you, Trent.
As an OT myself, I am guessing the OT was asking about visitors besides you. I always encourage the primary caregivers to take breaks and get other people to come spend time. Is she getting pretty consistent therapists? If there are some that she works well with, request that she stay on their schedule.
Keep being kind to yourself.
She meant family. She meant me. She’s in skilled nursing rehab getting combo of OT, PT, ST & MT therapy 5-6 days a week.
Sorry …I had not gotten to this comment before I wrote mine. I did not realize you were sure she meant you.
Well in that case she was being rude. You are not obligated to visit any more than you want to or are able to.
Why should all of that fall onto one family member?
I wonder if the OT has ever been expected to put her life on hold, including time with her child, in order to do something like this.
Nor if she was aware that I have bipolar disorder and this burden can (and does) trigger mood cycling. I cannot take more of BOTH of my parents’ care settings calling me to the rescue.
I also think that the OT meant visitors other than you. Otherwise she would have said “Have you been coming to visit?”
And I think she thinks of you as the daughter/ care giver as opposed to a “visitor.”
It is not resaonable for one person to have to do all of the visiting and care giving. It is too draining.
Even the health insurance companies acknowledge this because that is the reason they pay for “respite care” so the main care giver can take a break and still know their parent is being taken care of properly.
We often had people stay for a week or two in the nursing home I worked in because the family was taking a break for their own mental health.
She looked directly at me when she mentioned visitors. She made herself clear that she meant anybody, including family. Said that she had seen no one visit. I tried to take two days off and crash on the couch. Now both of my parents have tried to escape their care settings, and both settings have called me to the rescue. The director of my father’s memory care had me bring him to my home last night.
It is too much for you. You have a child that takes a lot of your energy and time, like I do.
People who do not have a kid that has special issues do not realize the extra work and energy needed to care for them.
I could not take on another person to care for right now. Working and the time and energy to care for my daughter with mental illness issues is already taxing my energy reserves.
I am not sure what you can do. I don’t think it is fair for people to expect you to have to do it.
I wish I could say something more helpful. Mainly I think the OT person was judgemental about a situation she knows nothing about. She could probably not survive your life or mine.
Blessings and prayers,
Annie
Thank you, Annie.
Not an easy job. My dad took care of my mom’s full needs for 15-20 years. Hugs and love <3
I spent e decade working with survivors of brain injury (including stroke) and their caregivers. Time away is essential. So is support. Is there a support group for family caregivers in your area? You need to be supported by others who are dealing with the same complicated emotions and stresses that arise here. Grief, guilt and resentment are all normal. It helps to hear that from others who are on the same path.
Stay strong (and that means looking after yourself first).
Yes. Great idea. Time to connect.
Guilt, the gift that keeps on giving.
You know when you’re in the airplane and they do that thing with the oxygen masks, like if there’s a child or elderly person sitting next to you, whose mask should you put on first?
Yours.
Because if you crap out from no oxygen, who will be left? Nobody, because you’ll all die.
Therefore the helper has not merely a right but a duty to help herself first.
Otherwise there will be no helper.
QED.
Take care of yourself, and if your mom wants to pack her bags, fine. It will give her something to do. Meanwhile, you take care of Number One so that you don’t end up in the bin.
OK?
❤❤❤
My dad packed stuff into plastic bags and I got a call from staff to speak to him. He said he wanted me to get him out of this mental institution and take him back home. My parents lived alone in a huge ocean front house, so this is a hard transition for them, especially since they are separated for the time being with my mom in skilled nursing for stroke rehab and my dad in memory care. I’m on the verge of tears as I type this, as my husband drives me and my dad to visit my mom.
Yikes, both of them! Will they be able to share a room in the future? It’s so hard for life mates to be separated, and I’m sure it amplifies your stress level too! Put on that oxygen mask!
That’s the plan, but since my mom is in the acute care stage post stroke (11/14), she’s in stroke rehab and he’s in memory care. The plan is to move them both into memory care once my mom can swallow liquids. Ready to release liability for aspirating liquids just to get them back together. My father stopped working over thirty years ago and they’ve been inseparable ever since.
This is what happened with my grandparents. He was in the hospital and she was back at the retirement home in personal care. My parents had my grandfather released from the hospital into full nursing care, so even though they weren’t together in the same apartment, he was just two floors down on the elevator, which was located just outside her room. It made a big difference. They had been married 73 years and really didn’t know what to do without the other.
I need them in the same setting. Clearly. Thank you for sharing your experience.