My day didn't start too well. I'd been up until 2am burning a slide show to disc and setting it to music (a desperate attempt to regain some sort of input in a day that had been taken out of my hands). I woke at 7am and hurried across the country to pick up my Niece, only to find that I could have slept in an extra hour since the clocks had gone back the night before... We got to the Home in good time and found Mum in her wheelchair, unable to take a single step now, so that I had to lift her up and place her in the car seat. She made horrible noises of pain even though I was as gentle as I could be.
When we got to the venue, it was beginning to spit with rain, but I had my golf umbrella prepared. Mum still complained that she was getting wet [ * important]. We got her inside and found that the function room was upstairs and there was, of course, no elevator. Mum announced that she needed the toilet and my Niece and another relative took her into the Ladies. Then the relative came out to tell me that my Mum needed a new skirt and underwear [ * Mum had thought it was the rain making her wet, but it hadn't been]. I drove back to the home with D, where we ended up having to search the laundry for clean underwear.
Back at the Inn, some male relatives had supervised Mum's ascension to the upper floor in her wheelchair, carried aloft like the Queen of Sheba. My female relatives got Mum changed and we began the meal. The food was excellent but Mum was pretty out of it: she didn't really recognise anyone save me and D and didn't take part in any conversation. I had to cut up her food for her. She was falling asleep before the dessert came.
We trooped back to the Home, where the Function room had been laid out very nicely by the Care staff for the second half of the celebration, where Mum's fellow residents could join us. There was a full buffet but none of us were hungry any more. Mum was quite bewildered now and didn't seem to understand where she was: she kept saying that she would need to go upstairs to use the toilet, and I couldn't make her understand that she was back home now and mere metres from her own facilities. While everyone else enjoyed the slide show, Mum couldn't keep her attention on the screen and ended up looking sideways at something else.
It seemed to me that poor Mum was being put through an assault course of demands and psychological disorientation and, not for the first time, I questioned who this was all being done for.
By 6pm the relatives were beginning to say their goodbyes and I had formed two conclusions about the day:
(1) I was glad that the wider family had finally seen where Mum is now living, and were impressed with the facilities
(2) D had learned that she can't do this to Mum again (I made sure she acknowledged it out loud)
An odd thing happened to me today. One of the new additions to our family by marriage is a capable chap I'll call C. During his student years he had done a stint working with the elderly and infirm and he spent the day being very practical and take-charge. He was wonderful with Mum. After a year of coping single-handed with this situation, it seemed like I was constantly chasing my tail today, running around looking for my car key (in the ignition), thinking that someone had stolen my umbrella (again in the car), losing the DVD with the slide show (again in the car). I was hot and sweaty and confused and I found myself wiping tears from my itchy eyes and telling C that I believed his competence was allowing me to finally let myself go to pieces a bit.
An odd thing happened to me today. One of the new additions to our family by marriage is a capable chap I'll call C. During his student years he had done a stint working with the elderly and infirm and he spent the day being very practical and take-charge. He was wonderful with Mum. After a year of coping single-handed with this situation, it seemed like I was constantly chasing my tail today, running around looking for my car key (in the ignition), thinking that someone had stolen my umbrella (again in the car), losing the DVD with the slide show (again in the car). I was hot and sweaty and confused and I found myself wiping tears from my itchy eyes and telling C that I believed his competence was allowing me to finally let myself go to pieces a bit.
10 comments:
Sounds like a very hectic day... even for an event planner. The intention from D was great, but I guess she really should have considered not having the party at two different locations. But it's difficult, Greg, for anyone to understand the situation without having to go through it themselves.
One thing I learned from my trip last year was you can read and listen about all the experience of others you want, but you can never truly understand the experience unless you go through it yourself. Hence, you could've told D a million times why it's not a great idea to host the party, she can never understand it until she host it herself.
Hope you're feeling better. And again, we haven't said it enough, you are a wonderful son and a wonderful human being.
Aww Greg... I read this entry a couple of times and nodded here & there knowing what you went through. We held a small birthday cake & tea for my mom's 80th birthday earlier this year and she could barely stay awake through it and it was only a couple hours with a small group.
Up till a couple years ago, we'd put ourselves (and poor Mom) through the ordeal of the outside world and we finally decided to not do that anymore. The washroom situation is quite important and we found many places just weren't equipped to handle a wheelchair. And it just seemed like we were putting unnecessary stress and confusion on mom. You cracked me up with the "Queen of Sheba" - we had a few scenes like that! Do you think your mom was just having a bad day for walking?
My mom also had washroom issues which eventually led to the use of "products". When mom first showed signs of Alzheimers, I shuddered and cried at the thought of her needing to wear "products" but as the need arose, I guess it was just another step and didn't seem as horrible as I imagined years earlier (it's funny how one's perception of things evolves as the illness evolves).
Good thing is that your extended family got to see where your mom lives. I kinda wished we had more people come see where mom lived but somehow, people avoided it in a way.
Nice that you met C...it's comforting to have a pair of capable hands around somedays so you can relax a bit or go to pieces, hee hee :) hugs, citygirl
Mum's walking problems are something I'm puzzling over. She was a bit unsteady a year ago but managing with her stick and with furniture to hold onto. I remember the Social Worker voicing concern that Mum would launch herself from the mantelpiece to totter across her Living room into the Kitchen in her old place. Over the course of the year I've taken to using a wheelchair whenever we went out shopping in order to speed us along, but about a month ago Mum seemed to get a lot worse. The Doctor thinks that she has rheumatism in her knees, but it's pretty plain to me that it's more an inability to connect thought to motion which is the problem. If I tap her left leg and say "move this one forward" she just can't. I also noticed her spatial awareness was skewed at the dining table, with her unable to understand that she needed to move her hands out of the way when hot plate was being placed in front of her, and eating off my Nieces plate as if it was hers (and not in a cute way).
I think my days of taking Mum out to restaurants on my own have come to an end. Fortunately, the Home is a kind of Village community and there is a restaurant on the ground floor where I can wheel her on my future visits. I'm not quite ready to follow her into the Ladies toilet and organise her at some country pub. Otherwise, as you say, Citygirl, it's time for "products".
I've also noted, with surprise, the number of concerned friends who've broken contact as soon as they've learned that Mum is "in a Home". I was determined that some of our closer relatives get over their preconceptions and see that the place isn't so frightening.
Sorata, you are so generous to D and to me. I pretty much expected this to be too much but I also knew that D had to learn it for herself or she'd keep trying. She was full of self-recriminations at the end of the night and wouldn't stop about how awful she felt, as if it was all about her.
Hugs to you both : D
Interesting about the walking and the doctor's idea about rheumatism. My mom also lost her ability to walk and I completely agree with you that it's the brain not being able to make the legs move and the spatial issue (she was scared to walk because she seemed very uncertain of the floor).
Funny how concerned friends avoid the home eh? I had a few good friends who were always so concerned about me/mom and would visit us at her house when she lived there but never once went to visit her at the assisted living and then the nursing home.
Last bit...I forgot to say you're a good son in my previous note. All of the entries in your blog always show how loving and devoted you are to your mum :) citygirl
Hey Greg, just catching up with my faves and wanted to comment. As usual, I'm incredibly envious of your ability to describe things so perfectly. You're gifted. Your day sounds exhausting and confusing and sad. You're dealing with it all so much better than I think I could. I'm thrilled with the new addition to the family and his ability to help in practical ways.
Thanks LSL. I'd love to do more writing in the future, so it's good to know that someone appreciates it. As for dealing with all this - I suspect you'd do even better if faced with the situation. When I had to intervene last year I was pretty much a shut-in after a long period of sick-leave from work (depression/chronic fatigue) and wasn't even able to look after myself very well. Mum's situation, however, left me no options and I HAD to be there for her and I somehow found the resources. Now that my Mum is in a stable safe environment it seems to me like my own life is heading down the toilet again, in some respects. If I was at all superstitious, I'd swear that some external force (God/Angel/my Dad's spirit) strengthened me over the necessary period, but I think I really was just backed into a corner and used the walls to brace myself. I'm not sure that 'C' will be around much in the future, being a more remote member of the family, but his level-head and patience would, indeed, be very welcome. Indeed, if he hadn't just married my second cousin I'd happily have him move in here!
Greg, I love your description that you were "backed into a corner and used the walls to brace myself." It's very true. I look back at what I went through and I can't figure out how I did it either! It's amazing the strength that you find when you are forced.
Good to catch up with you Greg - I so agree with your insights. I may have been a physiotherapist for over 20 years, but I was still astonished by the physical deterioration that can accompany dementia - yes, parts of the brain just seem to be obliterated for physical activity as well as for understanding. And sight can be affected too, like losing sight to one side completely. At least the damage to 'insight' can help someone get to accept the 'products'.
Be gentle and kind to yourself. Especially 'kind'. This is one of the hardest journeys for anyone in life, and the personal cost is unbelievable - but the gifts of love and of company are inestimable. Be sustained - never mind where from - accept the strength, when you can, just Be. Loads of love, x
Thanks, Chickpea. It's good to know I'm not alone - it's easier for me to doubt myself most of the time. Mum had some cortisone injections in her knees yesterday, so we'll soon see if that has any effect.
I've noticed what you say about sight, too. One of the other residents is a Lady who had a stroke and who now can't find the en-suite in her own room or see the knife and fork on either side of her dinner plate. Mum, herself, seems to have lost boundaries with regard to dinner plates and eyes up the food on those belonging to others, but that might just be a loss of inhibition rather than a peculiarity of her vision.
I'm trying to be kind to myself, as you say. It IS getting easier, but the guilt is mostly passing only because I can now see it was the right decision to place Mum where she is now. The conviction that I am a bad person is deep seated - something Mum herself re-iterated all my childhood, comparing me negatively against my Sister. Irony runs strong in my life...
G
It seemed to me that poor Mum was being put through an assault course of demands and psychological disorientation and, not for the first time, I questioned who this was all being done for.
we've gone through the same thing. my father takes no joy in restaurant dining, and groups over 2-3 overwhelm him. the people who want to "surprise" him with a "big party" are those who don't spend any time with him and so don't know how miserable he now is in a crowd. one more loss to this fucking disease.
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