Update
This is from my other blog, and I know that there is stuff here that I've already posted, but there are also updates from this week. I'm just too tired to go through and edit.
Some of you have asked how mother is doing, so I thought I would take this step away from all of the frivolity and do a little sober reality check. Mom took a sudden turn for the worse on Friday, September 8, when she suddenly decided to no longer stand up. She would lay in bed and weep and moan, screaming about people being in her room, etc. Erupting into hysterics whenever we tried to sit her up, we perceived what looked like panic attacks. This continued throughout the weekend, with me ending up in exhausted hysteria by Sunday night. We knew at that time that things could not continue status quo. It was decided that my sister – the human barracuda – should talk to the doctor. This woman does not take no for an answer. By Tuesday we had an antidepressant/anxiety medication called Serzone. This has seemed to calm her down a bit – she is no longer lying in bed screaming. She still will not stand. Wednesday we had a visit from the Home Health Nurse who immediately set us up with an aide, social worker and physical therapist. This is on a limited basis since Medicare doesn’t pay for long term care. The aide will help teach me how to take care of a bedfast (the proper term for this) person, like how to change sheets with a person in the bed – no easy task. The social worker is making recommendations to two organizations for relief – The Alzheimer’s association and some government agency whose exact title I can’t remember right now. The best was the physical therapist – although she said that mother may never leave that bed until she dies or goes into a nursing home – she is getting us a wheelchair and is recommending us to an organization which brings a doctor into the home so that we don’t have to struggle to get mother to her doctor. It means changing doctors, but it will be worth it. I am physically and mentally exhausted right now. I haven’t had a nap since Tuesday, a decent one since Monday. I’m running on adrenaline. I’m also in a bit of pain, all of the lifting and turning (we’re looking into a hydraulic lift) of mom, plus the cranking of the bed (only the head and foot parts are electric – to raise the bed you have to crank) is wearing on my shoulder – but raising the bed saves on my having to bend clear over to tend to mom. Soooo, that’s the 411 on the situation here. I’m hoping that things are going to start getting better – it’s too soon to tell how well the Serzone will work, so we’re keeping our fingers crossed on that one. I’m sorry that I haven’t been a regular blogger – I try to hit everyone at least once a week, but it’s hard some days to do any at all. Thank you for bearing with me – cyber hugs to each and every one of you who has supported me. I appreciate it more than you can ever know.
There was something interesting (and I mean that in a funny way) about the social worker - I said that mother was in stage 6 Alzheimer's and she said that there were only three stages. I replied that there were 6. She then told me that she had recently been at an Alzheimer's seminar where the speak was "that author who wrote the 36 Hour Day" and they said there were only 3. I countered her again. "Well, where did you get your information?" I looked her in the eye and said "The Alzheimer's Association's webpage." She just looked at me. I didn't know whether to laugh or cry.
Some of you have asked how mother is doing, so I thought I would take this step away from all of the frivolity and do a little sober reality check. Mom took a sudden turn for the worse on Friday, September 8, when she suddenly decided to no longer stand up. She would lay in bed and weep and moan, screaming about people being in her room, etc. Erupting into hysterics whenever we tried to sit her up, we perceived what looked like panic attacks. This continued throughout the weekend, with me ending up in exhausted hysteria by Sunday night. We knew at that time that things could not continue status quo. It was decided that my sister – the human barracuda – should talk to the doctor. This woman does not take no for an answer. By Tuesday we had an antidepressant/anxiety medication called Serzone. This has seemed to calm her down a bit – she is no longer lying in bed screaming. She still will not stand. Wednesday we had a visit from the Home Health Nurse who immediately set us up with an aide, social worker and physical therapist. This is on a limited basis since Medicare doesn’t pay for long term care. The aide will help teach me how to take care of a bedfast (the proper term for this) person, like how to change sheets with a person in the bed – no easy task. The social worker is making recommendations to two organizations for relief – The Alzheimer’s association and some government agency whose exact title I can’t remember right now. The best was the physical therapist – although she said that mother may never leave that bed until she dies or goes into a nursing home – she is getting us a wheelchair and is recommending us to an organization which brings a doctor into the home so that we don’t have to struggle to get mother to her doctor. It means changing doctors, but it will be worth it. I am physically and mentally exhausted right now. I haven’t had a nap since Tuesday, a decent one since Monday. I’m running on adrenaline. I’m also in a bit of pain, all of the lifting and turning (we’re looking into a hydraulic lift) of mom, plus the cranking of the bed (only the head and foot parts are electric – to raise the bed you have to crank) is wearing on my shoulder – but raising the bed saves on my having to bend clear over to tend to mom. Soooo, that’s the 411 on the situation here. I’m hoping that things are going to start getting better – it’s too soon to tell how well the Serzone will work, so we’re keeping our fingers crossed on that one. I’m sorry that I haven’t been a regular blogger – I try to hit everyone at least once a week, but it’s hard some days to do any at all. Thank you for bearing with me – cyber hugs to each and every one of you who has supported me. I appreciate it more than you can ever know.
There was something interesting (and I mean that in a funny way) about the social worker - I said that mother was in stage 6 Alzheimer's and she said that there were only three stages. I replied that there were 6. She then told me that she had recently been at an Alzheimer's seminar where the speak was "that author who wrote the 36 Hour Day" and they said there were only 3. I countered her again. "Well, where did you get your information?" I looked her in the eye and said "The Alzheimer's Association's webpage." She just looked at me. I didn't know whether to laugh or cry.
posted by Bailey Stewart at 11:02 PM
5 Comments:
Yeow, yeow, yeow, Bailey. I've been wondering, too. Now, I guess, I don't have to wonder.
I remember when my mother was "bedfast" (god, I love this term, thanks for using it, it's so exact) after she hurt her back. This sounds like that period. The memories are painful. I'm sure you're physical and emotional pain and exhaustion are even worse. Otherworldly and miraculous strength to you, Bailey, as I know you are determined to see her through any and everything.
Weird about the Alzheimer's social worker. Makes you wonder how much invented information there is clogging the field and how this affects the professional help one receives.
I was just at a talk at my mom's facility by someone at the Alzheimer's Association, and she said that there are multiple ways of defining the stages of the disease - some say 3, some 6; she said someone once told her: "My mom's in the 22nd stage of the disease."
You know, your mom not standing might be about more than her just deciding now to. Who knows how the disease affects the body....she may be forgetting how to stand on a neuromuscular level. I'm so sorry. I have compassion for both of you.
I'm glad though that you've got help and support coming in. Hang in there. Cyber hug.
Bailey, just commenting so you know that I'm here for you. You are in my prayers and thoughts. Weird about the Social Worker, but at least she is going to try and get you some help. When I had to use one when my Mom was in the Hospital she was useless.
Eve--(((HUG))) Your week reminds me of the week after my father was hospitalized for spinal stenosis. I remember the first morning when he just lay in bed, unable to to get up, and my life flashed before me. How to handle all this? His doctor eventually put him on Fentanyl--an opiate-type painkiller that is absorbed through the skin. We changed the patch every 3 days. He was able to walk eventually, after the PT. The down side is that the patch probably aggravated his mild dementia. These are the choices we have to make, and it seems like you've had way too many of them in the recent past.
The only thing I can say (and you already know this, I think) is that the professionals are required to give us the party-line--and I don't mean anything derogatory by this, I'm referring to the textbook line--but then we can only do what we can do. We have to decide that for ourselves. I am so glad you're getting in-house help. It will probably take another week for the Serzone to have its full effect--I hope it will give your Mom--and YOU--some tranquility.
Bailey, thanks for the update. I'm glad you're getting help, even if it's not immediate relief. No wonder your back hurts!
As far as the stages of Alzheimer's, who knows if your mom even has Alzheimer's? I'd take it all with a grain of salt, and just deal with what you do know.
I'm sorry to hear this is such a tough time for you.
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