My 94 year old mother with dementia has lived with me the past 2 years now since June. She's laying over there bedridden...and I'm sad, crying, feeling guilty that I could've/should've done more about letting her visit her home and be around the things she loved. She lived on the property where she was actually born and raised and loved to sit on the porch and try to figure out what the neighbors were doing, watch traffic etc. We did try to take her a few times when my hubby would do yard work and it went pretty well however the last time was somewhat of a disaster when she informed us she was going to stay and would not budge so we never took her back. Has anyone else ever had these type feelings??? I don't know, it just always seems I'm on an emotional roller coaster feeling guilt about one thing or another and today this is where my mind is.
I am a caffeine addict! Hahaha, can I come too?
I encourage everyone who has come through dementia to go onto your local Nextdoor.com intranet sites and post your availability to help those who are at the very beginning of the journey (or hopefully earlier) and are searching for guidance (not professional advice, just practical). I've done that in my area and have helped a few people so far. I did this on Friday night when a woman found my name and wanted to meet to talk about how she has flown up from Atlanta to attend her father who just shattered his femur. She left her 16 and 10-yo for a week to sort things out with her parents' care. Her dad is 88 years old but mentally totally sharp but had no end of physical trouble after his fracture. Then this woman and her sister discovered that their mom, also 88 and very fit and sharp (or so they thought) was in a state of confusion, over-medicating herself, not able to take care of her husband after rehab, etc. The daughter I was talking with discovered pills and piles of cash stashed everywhere, and her mom couldn't figure out how to raise the thermostat 1 degree. And so the crisis begins. I was so grateful to be able to give her some practical suggestions to help that family. So, I encourage everyone who has been seasoned by the D Experience to "pay it forward" to others just beginning that journey in more venues than just this one (wonderfully helpful as it is). Peace and blessings to you all!
Be kind to yourself when you are low. Acknowledge it, accept the decisions that were made in the past & then come back to now.
My Mum had talked for years about taking a ferry trip - it's 12 hours from our city overnight or day to another city. I encouraged her over & over but she & Dad just wouldn't go (even when fares were on sale). I offered to buy the tickets for a special birthday but she said she wouldn't actually go.
The last 20 months I have been on that roller coaster. I've been all over the place trying to find my role on the spectrum of *helping -enabling - stepping back - getting perspective of REAL care needs - getting care needs met - having my own life too* with againg parents, disabled sister & teen child problems - a mega storm of needs swirling around me.
So I took a break. Went on that ferry. Sat & looked at the blue sea all day & gained perspective & acceptance.
Yes I felt sad. Sad Mum didn't ever take that trip. Sad it's too hard now (in wheelchair). Prob be 10 mins into the 12 hours & she'd want to go home. Sad I took the trip & didn't tell her. She'd want to be carted to the dock to wave me off .. hard work for Dad & useless now she has lost so much sight (stroke). May also stir up her regret she didn't ever go. She would have fretted the whole time if she knew I was away, needing constant updates. So I turned the phone off.
Visited today. Looked at their tired faces, Mum in clothes she won't wash, Dad hadn't shaved, sister has sore feet & even more trouble walking.
Just enjoyed a visit today... that's all I can do. Hold a hand for a while.
Hugs to you as you hold a hand too.
So many of us on this forum can relate to your pain, and I see you've received many sage responses.
You are a decent human and doing the best you can for your old mom.
If you haven't already, consider talking to a professional to help you process your feelings of guilt and sadness in this profoundly difficult time.
I wish you well.
But I digress.... my mom finally agreed to sell her house (in a town 3 hrs from here), so finally have it cleared out and some updating being done to put it up for sale.
My mom also has wanted to go back over and see it, and had asked through this entire process so far, and I know it would have been much harder on her, and I don't want her to have another heart attack or stroke, so I have repeatedly said no.
Mom has lost weight over the years and had so many clothes 2-3 sizes too big in 3 different closets, probably 40-50 pair shoes and purses, not to mention all the collectibles. She had hoped to bring EVERYTHING here and try to sell it.... after much decision-making on my part with input from daughter who was helping a lot, we never brought Mom over there, and we had an estate sale, and donated a lot after that. Some of her things we brought over here to storage but that is expensive, so will have to figure that out later.
I just know my mom could never stay by herself again... I said NO. There has been a lot of give and take on each of our parts but she will remain here with me..... as long as it works out. I hope she doesn't live long enough to have to go to ALF but that could definitely be a possibility down the road.
The roller coaster is an excellent description of the ups and downs.... this is the 4th time in my life like that, first with teenaged daughter running away/bad crowd, second with husband and years we went through his cancer, 3rd in a short second marriage with a severely alcoholic/mental health problems, and now 4th... with my mom. This aging process is one very difficult thing. We will survive, but it is a long road. My heart goes out to you, and yes, there are many of us who understand.
Advice: Honor her and yourself...and find a way to forgive yourself and live a productive and happy life.
My mind wanders a lot too! If I don’t stop it, when I notice I’m doing it, I start to question myself on everything! The further I get into my “wandering“ I am depressed, sad, and my body aches.
FOG bites me in the butt a lot but I’m slowly learning and getting better, especially reading here from others stories and experiences 😉
It’s an emotional roller coaster for sure !!!
Many hugs for you!
My Husband also lived in the house he was born in when I/we had to move to a house that was better suited. He actually did better than I thought he would but there were a few times when he "escaped" and tried to go back to the old house. (Once he was gone for 15 hours, the police in the next state north found him and responded to an alert the local police put out)
If you can get her out for a ride, a to a park might be nice. If you can not get her out for a ride a walk would be nice if you have a good sturdy wheelchair.
Do you have Hospice in to help you out? If not you might want to give a call. Most Hospice will have Music therapists, Art therapists that she might enjoy.
If nothing else YOU need help with her and support form a Social Worker, Chaplain and knowing you will have weekly visits from a Nurse as well as a CNA a few times a week. Not to mention supplies and equipment that will make caring for her so much easier.
If they'd left her there, she'd have fallen, broken a hip, been all night on the floor waiting for help to arrive... we know how it goes.
But then again. So? You can't help wondering which evil is the lesser, sometimes.
The big difference is that your mother has you there with her; and I should think that matters more to her than anything else. It's still terribly sad that the life she lived in that community has come to an end; and these decisions *are* dilemmas and they do tear us in two; but guilt? What part of your mother's aging or illness did you do to her?