“Life isn’t about waiting for the storm to pass…it’s learning to dance in the rain.”
- Unknown
Talk about a quote that really speaks to a situation! Yesterday, in a need to get inspired, I went to YouTube and picked a random TedX conference, I think it was the Boston one in September, and just started to listen to what people had to say. AMAZING! This is no time to shrink away. This is the time to step up to the plate and take a swing. One of the speakers was from the Awesome foundation. I'm wondering if there is a way to help patients with Alzheimer's through this foundation. Hmmmm.
I saw my Mom yesterday, we had a great day. It's the first time we've talked at all about her diagnosis. I so want to be able to give her a voice and let her know that she is heard. She is an amazing woman.
I also bumped into to her doctor. I felt a lot better about everything once we had chatted. I think I have anger about this whole situation, and it can be so frustrating. I will have to stay aware of that and keep it in check.
Thursday, October 20, 2011
Tuesday, October 18, 2011
later on October 18, 2011
I have a little time on my hands today. That doesn't happen often now. I want to cherish it, I want to cherish everything. It's so hard not to become consumed by what will be lost. I was just reading the few blog entries I made when my Dad passed. It's amazing to me as I read, what I wrote. It's like we have to learn the same lessons again and over again.Why is loss such a shock?
I looked back at the entries I've already made on this blog. I have to learn that every slip my Mom makes isn't necessarily a step off the cliff into the ocean. There is a level of wanting to be prepared, if you accept the inevitable, then somehow you will be more ready for it. It's not true, you just waste time worrying. I'm trying to teach Olivia about how useless "worry" is. I hope I can help her learn that, I hope I can.
I'm really hurt by the way my Mom's doctor is behaving. I don't know what to make of it. I've always dismissed people when they spoke of how unfriendly the healthcare system is. We've been so lucky and now all of a sudden, when I need it most it is failing me.
I looked back at the entries I've already made on this blog. I have to learn that every slip my Mom makes isn't necessarily a step off the cliff into the ocean. There is a level of wanting to be prepared, if you accept the inevitable, then somehow you will be more ready for it. It's not true, you just waste time worrying. I'm trying to teach Olivia about how useless "worry" is. I hope I can help her learn that, I hope I can.
I'm really hurt by the way my Mom's doctor is behaving. I don't know what to make of it. I've always dismissed people when they spoke of how unfriendly the healthcare system is. We've been so lucky and now all of a sudden, when I need it most it is failing me.
October 18, 2011 5 weeks and 1 day
Yesterday was a really rough day. I'm having a terrible time with my Mom's family doctor. I've been told that GP's find Alzheimer's patients really demanding! Are you kidding me?! Of course they are, they are scared and have no idea how to handle their new found predicament!
It's amazing to me how my parents family doctor was so amazing when my Dad was dying and now he can't even fit my Mom in. He isn't ordering tests that the specialist is asking for, and then letting stuff drop through the cracks. My Mom isn't much help. She's cancelling appointments, not telling me about other ones. It sucks so much time out of your day!
I'm off to Dundas tomorrow. I always feel better once I've spent some time with my Mom.
It's amazing to me how my parents family doctor was so amazing when my Dad was dying and now he can't even fit my Mom in. He isn't ordering tests that the specialist is asking for, and then letting stuff drop through the cracks. My Mom isn't much help. She's cancelling appointments, not telling me about other ones. It sucks so much time out of your day!
I'm off to Dundas tomorrow. I always feel better once I've spent some time with my Mom.
Wednesday, September 28, 2011
Day 9
Today my Mom and I met with her financial planner. When I got to my Mom's there was a note from her friend saying that she was trying to get hold of her but her voice mailbox was full... Yikes, I really need to be able to get hold of my Mom. I went through 20 messages, one from my husband, he had left my Mom this beautiful message when I told him she was diagnosed. I put it on speaker and my Mom and I both started to cry. It was such a good feeling to know he was on our team.
Now the Google doc has contact information for the gardener Brad, AND how to go through my Mom's voice mailbox. Someone will be needing to do that on a regular basis. I'm not sure why though, if my Mom isn't picking up messages... I guess we will find out what she has missed. Big sigh!
After an exhausting, yet productive meeting with the financial planner my Mom and I headed out to this great little Thai restaurant for lunch.
More and more people are finding out. It's so hard and a relief all at the same time. One of the "support" groups called. Did my Mom need help bathing? with her toileting? No? Not yet? Oh God, this isn't gonna pretty, that's for sure. Stay in the moment! Try your best!
Now I've added a new section to our Google doc, not sure what to call it though. Future Care options? STAY IN THE MOMENT!
I need to go bury myself is some bad TV.
Now the Google doc has contact information for the gardener Brad, AND how to go through my Mom's voice mailbox. Someone will be needing to do that on a regular basis. I'm not sure why though, if my Mom isn't picking up messages... I guess we will find out what she has missed. Big sigh!
After an exhausting, yet productive meeting with the financial planner my Mom and I headed out to this great little Thai restaurant for lunch.
More and more people are finding out. It's so hard and a relief all at the same time. One of the "support" groups called. Did my Mom need help bathing? with her toileting? No? Not yet? Oh God, this isn't gonna pretty, that's for sure. Stay in the moment! Try your best!
Now I've added a new section to our Google doc, not sure what to call it though. Future Care options? STAY IN THE MOMENT!
I need to go bury myself is some bad TV.
Tuesday, September 27, 2011
Day 8
I've had a really weird day. I've been really mad at my husband. Last night he was inviting his aunt for Thanksgiving dinner and I asked if had told her about my Mom. He didn't, he didn't feel it was his place. I said I had thought he sounded like he was struggling to come up with conversation. He told me it was hard to find something positive to talk about. What? What the hell is he talking about? I asked him.
He's really busy and stressed out at work and my Mom. Are you fucking kidding me? We just booked a trip to Whistler for March Break, we have two beautiful, healthy, well adjusted kids. We have a great marriage. We live in a fantastic neighbourhood and have lots of friends. He's just got back from a guys weekend away and has another one planned in a few weeks. He sails every Wednesday. What the hell is he talking about? When will it be enough! I know I'm not really mad at him, but it makes me crazy. Why are people so stupid, and unappreciative of everything they have? It makes me crazy!
I'm so sad, I'm heart broken!
He's really busy and stressed out at work and my Mom. Are you fucking kidding me? We just booked a trip to Whistler for March Break, we have two beautiful, healthy, well adjusted kids. We have a great marriage. We live in a fantastic neighbourhood and have lots of friends. He's just got back from a guys weekend away and has another one planned in a few weeks. He sails every Wednesday. What the hell is he talking about? When will it be enough! I know I'm not really mad at him, but it makes me crazy. Why are people so stupid, and unappreciative of everything they have? It makes me crazy!
I'm so sad, I'm heart broken!
Day 5 - really is it only day five?
I haven't talked to my Mom yet today and it's 2:30pm. I will call her after I make this post. One of my Mom's friends has given me the contact information to several of my Mom's friends that are close to her in spirit and location. I've forwarded them my contact information and asked them to let me know if they notice anything that I should know about.
I've contacted a couple of retirement residences so hopefully I can get some information about cost and stuff like that. I always feel better armed with information. Well not always I guess, I wish I was still blissfully unaware of my Mom's diagnosis. I want to start spreading the word to people "don't get your parents tested for Alzheimer's, you don't want to know"
I've contacted the local Alzheimer's group about joining a coffee clutch and I'm waiting to hear back from them.
What the hell else am I supposed to do? Why isn't any of this making me feel anymore powerful in this situation?
I've contacted a couple of retirement residences so hopefully I can get some information about cost and stuff like that. I always feel better armed with information. Well not always I guess, I wish I was still blissfully unaware of my Mom's diagnosis. I want to start spreading the word to people "don't get your parents tested for Alzheimer's, you don't want to know"
I've contacted the local Alzheimer's group about joining a coffee clutch and I'm waiting to hear back from them.
What the hell else am I supposed to do? Why isn't any of this making me feel anymore powerful in this situation?
Monday, September 26, 2011
It was one week ago today - September 26th
So much has happened in the last week. My Mom's friends have really rallied around her. My own friends, the ones I have told, have been an amazing support. It's weird, I've arrived on front porches in tears and sat through entire evenings without mentioning it. I never know how it's going to go. I learned through my Dad's illness, just to go with it. It's nothing personal, sometimes I have to talk about it and sometimes it is impossible to.
Having the contact information for several of my Mom's friends and them having mine is invaluable. It's really important not to face this kind of thing alone, if you don't have to. My Mom is doing amazingly well, and that certainly makes it all easier to bear. My sister knows and was incredible when she heard. We are really trying to be there for each other and for my Mom.
This week my Mom and I already have a scheduled appointment with her financial advisor. This will give us a chance to make sure everything is in place. Everything from powers of attorney to the executor of the will and making sure that my Mom is positioning herself financially for years of care.
Since I am in a much better position to actually visit my Mom, my sister and I have set up a Google doc that has all the contact information for friends and neighbours of my Mom. We've listed both her GP's name and the Geriatric specialists name and contact info there too. I listed all the information for the appointment where we got the diagnosis and as I go to appointments I will add the information there so that my sister is up to date and feels like she is a part of the whole process of helping my Mom
Having the contact information for several of my Mom's friends and them having mine is invaluable. It's really important not to face this kind of thing alone, if you don't have to. My Mom is doing amazingly well, and that certainly makes it all easier to bear. My sister knows and was incredible when she heard. We are really trying to be there for each other and for my Mom.
This week my Mom and I already have a scheduled appointment with her financial advisor. This will give us a chance to make sure everything is in place. Everything from powers of attorney to the executor of the will and making sure that my Mom is positioning herself financially for years of care.
Since I am in a much better position to actually visit my Mom, my sister and I have set up a Google doc that has all the contact information for friends and neighbours of my Mom. We've listed both her GP's name and the Geriatric specialists name and contact info there too. I listed all the information for the appointment where we got the diagnosis and as I go to appointments I will add the information there so that my sister is up to date and feels like she is a part of the whole process of helping my Mom
Wednesday, September 21, 2011
Day 3
I talked to my Mom yesterday and asked her about the driving. She said that she was going to keep driving until she got something in the mail. Hmmm, I don't think that's what the doctor meant. We went back and forth a bit and then I let it go. It's so hard to know what to do in these cases. I don't want to alienate her, but she needs to be safe and I don't want her to hurt anyone.
She is really worried about my sister. She, my sister, is having a really hard time right now. Her husband is just back at work after 7 months off, it's a long scary story but the stress of that is really taking it's toll. We've sort of given my sister a slightly revised version of what is actually going on with my Mom. I told her the truth, more or less, the only change I made was that I said that they are still doing tests to find out what is going on with my Mom. My sister kept saying how relieved she was and that if anything was going on with my Mom it would devastate her. I just don't have it in me right now to break my sister's heart. But I'm also scared that she is going to be hurt that we kept this from her. I get that this is a journey, but I just don't want to take it!
10:30am: The doctor just called. She wanted to talk about my Mom taking the "Drive Able" test. It gives people with Alzheimer's a chance to win back their drivers licenses for a while before they get too far gone. Did I just say "too far gone"? Damn I hate this! I told her what was going on, she was very sympathetic and gave me a bunch of strategies to deal with my Mom. I bit the bullet and called my Mom. She didn't answer and her mailbox is full! Is this what's is going to be like? If this is only Day 3, what's Day 47, or Day 122 going to be like? I just want to crawl into bed and pull the covers over my head!
She is really worried about my sister. She, my sister, is having a really hard time right now. Her husband is just back at work after 7 months off, it's a long scary story but the stress of that is really taking it's toll. We've sort of given my sister a slightly revised version of what is actually going on with my Mom. I told her the truth, more or less, the only change I made was that I said that they are still doing tests to find out what is going on with my Mom. My sister kept saying how relieved she was and that if anything was going on with my Mom it would devastate her. I just don't have it in me right now to break my sister's heart. But I'm also scared that she is going to be hurt that we kept this from her. I get that this is a journey, but I just don't want to take it!
10:30am: The doctor just called. She wanted to talk about my Mom taking the "Drive Able" test. It gives people with Alzheimer's a chance to win back their drivers licenses for a while before they get too far gone. Did I just say "too far gone"? Damn I hate this! I told her what was going on, she was very sympathetic and gave me a bunch of strategies to deal with my Mom. I bit the bullet and called my Mom. She didn't answer and her mailbox is full! Is this what's is going to be like? If this is only Day 3, what's Day 47, or Day 122 going to be like? I just want to crawl into bed and pull the covers over my head!
Tuesday, September 20, 2011
Day 2
It's amazing how a couple of words spoken by a doctor can entirely change your world.
All I keep thinking of is the doctor saying "I asked her to write in the numbers of a clock and then put the hands in at 10 to 11, she couldn't do it" "I asked her to subtract 7 from 100, she couldn't do it" "I asked her to copy of picture of of two pentagon's overlapping, she couldn't do it" she couldn't do it, she couldn't do it, she couldn't do it!
Then she asked me if my Mom was apathetic? no more than normal. Was she acting depressed? no. Did she seem short tempered and frustrated? no. That's good, right? That made me hopeful, maybe she's alright.
I realize now, that's what's our future holds, it will come in time, we're just not there yet.
It's supposed to be good that they've found out about my Mom's condition early, that way they can start treating it. I wish only I knew and that my Mom didn't. My Mom is so vital and full of life. She's so interesting and interested. She's too smart to have this happen to her. She must be so scared. I'm so sad for her.
I left a message with Mom this morning, I still haven't heard back. Yesterday morning, that would have been standard, my Mom has never been good at returning messages. When do I start to worry? Figuring this all out ain't gonna be easy! I'm going to be driving the poor woman crazy!
I know I have to give her as much control in this situation as possible, that ain't gonna be easy either! I know how I want to handle this, hopefully we'll be on the same page, at least every so often.
GREAT ADVICE:
All I keep thinking of is the doctor saying "I asked her to write in the numbers of a clock and then put the hands in at 10 to 11, she couldn't do it" "I asked her to subtract 7 from 100, she couldn't do it" "I asked her to copy of picture of of two pentagon's overlapping, she couldn't do it" she couldn't do it, she couldn't do it, she couldn't do it!
Then she asked me if my Mom was apathetic? no more than normal. Was she acting depressed? no. Did she seem short tempered and frustrated? no. That's good, right? That made me hopeful, maybe she's alright.
I realize now, that's what's our future holds, it will come in time, we're just not there yet.
It's supposed to be good that they've found out about my Mom's condition early, that way they can start treating it. I wish only I knew and that my Mom didn't. My Mom is so vital and full of life. She's so interesting and interested. She's too smart to have this happen to her. She must be so scared. I'm so sad for her.
I left a message with Mom this morning, I still haven't heard back. Yesterday morning, that would have been standard, my Mom has never been good at returning messages. When do I start to worry? Figuring this all out ain't gonna be easy! I'm going to be driving the poor woman crazy!
I know I have to give her as much control in this situation as possible, that ain't gonna be easy either! I know how I want to handle this, hopefully we'll be on the same page, at least every so often.
GREAT ADVICE:
- Make sure I give my Mom a chance to contribute to my life, just like she always has. She's still my Mom and she's still a great, interesting, informed woman.
- Maybe we don't have to use the "A" word. Maybe we can tell people that she's not driving because they are looking into some neurological issues and want to be safe. It's not a lie. Try and let her control who knows what, and when.
September 19, 2011
When my Dad passed away last year I started a blog. I made a couple of posts, but it all happened so fast that I couldn't keep it up and posting didn't seem to be an answer for my grief. Today, less than a year and a half later, my Mom has been diagnosed with Alzheimer's. Honestly, until today, I didn't think there could be anything worse than to witness a parent being diagnosed with incurable cancer, until today.
I know there are a ton of things worse than that, losing a child, losing a husband but to witness that kind of, I don't even know how to describe it. It's not terror, it's more like defeat. To witness that, and to be totally incapable of saying or doing anything to make it easier to bear, is almost unbearable in itself.
How terrified must she be? What does her future hold? How long will she know who I am? I'm not ready to slowly watch my Mom fade away before my very eyes.
They told her she can't drive, that in itself must be a stunning lose. How is she going to explain that to people she doesn't want to know about the diagnosis? Her whole life has changed, on a dime.
The doctor said it will be easiest on my Mom, I doubt that, at least not in the beginning. She already said, quite off-hand, that she would rather die than face this. I'm so sorry for her, I'm so scared for her.
How do I tell my daughters? My sister? When? When do we tell her friends? Who will stand by her? How are we going to do this?
I know there are a ton of things worse than that, losing a child, losing a husband but to witness that kind of, I don't even know how to describe it. It's not terror, it's more like defeat. To witness that, and to be totally incapable of saying or doing anything to make it easier to bear, is almost unbearable in itself.
How terrified must she be? What does her future hold? How long will she know who I am? I'm not ready to slowly watch my Mom fade away before my very eyes.
They told her she can't drive, that in itself must be a stunning lose. How is she going to explain that to people she doesn't want to know about the diagnosis? Her whole life has changed, on a dime.
The doctor said it will be easiest on my Mom, I doubt that, at least not in the beginning. She already said, quite off-hand, that she would rather die than face this. I'm so sorry for her, I'm so scared for her.
How do I tell my daughters? My sister? When? When do we tell her friends? Who will stand by her? How are we going to do this?
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