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She doesn't have the classic progression like there usually is in Alzheimers. Plus her brain scans show multiple little areas of bleeding and vascular damage - so they call it "vascular dementia." It's spotty - she's fine with some things but totally lost with other things and there's no pattern.
I took my dad in for a bone marrow biopsy Monday. His platelet count has been around 50,000 when the normal range is 150,000 to 400,000. They ran a blood test prior to the procedure and his platelet count was 3000. OMG! Basically all hell broke loose and the docs said, "We can't drill a hole in this man - he might never stop bleeding!" So instead, they admitted him.
They ran all sorts of tests and long story short, and THANK GOD, they ruled out cancer. Instead, the tests confirmed that he has ITP.
This is treatable, and it's a much more positive diagnosis than any sort of cancer involving bone marrow, but it is a bit of a lifestyle changer. Basically, his body thinks that his platelets are a foreign body or substance and so his immune system attacks them. So it's an autoimmune disorder. He should be able to live out a normal lifespan and a pretty normal life, with treatment. The treatment involves finding the right combo of drugs (most do not have debilitating side effects but there are some side effects) and very regular blood tests and possibly platelet transfusions if the count gets too low. The risks are bleeding - externally or internally - that is uncontrollable. But that risk can be kept to a reasonable level with regular treatment and screening. The treatment has to be tweaked pretty regularly, and the exact sort and mixture of drugs has to be maintained, so he will be hospitalized for at least 5 days in order to find the right mixture and get his platelet count back up to some semblance of normalcy.
So I've been running back and forth to the hospital and to my mom's house for the last two days. My mom is concerning but she's been doing fairly well. She doesn't really understand the gravity of the situation and is a bit childlike and clingy - I get that though because she's surely alarmed by all this. She is not particularly compliant about wearing her medical alert and refraining from working in the yard (in 100 degree heat!) or answering the phone when I call to check up on her, so that's driving me a bit crazy, but her two sisters are coming in today to stay with her so that will be a relief.
Interesting daughter news: Apparently she found out about my dad via other sources (not from me - she told me to quit contacting her so I did). She called Monday afternoon and said she would be coming for a visit Tuesday. She gave no time frame and didn't mention me being involved and didn't call me. She was going to come by the hospital and also go by and see my mom. Well, of course my mom and dad wanted me to be there - they are pretty put out about her behavior and want things patched up between us. I was willing to be there, but what I wasn't willing to do was sit around all day waiting for her to show up with no idea when that would happen. My mother goes to bed very early so we thought SURELY my daughter would show up by around 3 or 4 at the latest.
She called my dad around 11 and said it would be later in the evening - probably around 6. Now - I had been up at the hospital since 6:30 am, and then run around and did errands for both my parents and then went over and checked on my mom and visited with her for two hours. Like I said, it's 100 degrees here - smoking hot. I hadn't slept a wink Monday night either because I was so worried about my dad having leukemia or something deadly. And I had gotten up at 4:30 am yesterday morning because I had to take my husband to the airport BEFORE I met the doctor at 6:30 am!
My mom was literally begging me to stay till my daughter got there, but I just couldn't do it - especially since she is always - ALWAYS - notoriously late by at least an hour. So I left the grandkids a note that said I was so sorry that I wasn't there, but they could call me if they wanted to come by.
After being at the hospital all day, my phone was dead so I put it on the charger in the bedroom and then turned on the BBC and fell asleep in the living room by about 9 pm - totally spent. I had heard nothing by 9 pm.
I got up to crawl into bed about 11, and lo and behold, I had missed a call - AT 10:15 PM - from my daughter, saying "You said to call if we were coming by. I tried." WHAT THE HECK!!!!!!!!!!!
I sent her back a text message that said, "Sorry I missed your call. I fell asleep on the sofa with my phone charging in the next room. Call me tomorrow if you want to."
I could not believe that. CLEARLY this person who is so angry at me because I "am not sensitive to her feelings" (her exact words) is not at all sensitive to the feelings or situations of others. She cusses me out and then doesn't talk to me for WEEKS and then she decides to grace me with a call at 10:15 pm after two hellacious days and thinks that it's a good idea to come by my house at 10:15 WITH FOUR KIDS under the age of 11 and that I will still be up and waiting for them to show up, with no contact or coordination beforehand??? Grrrrr.
Anyway, her text message said that she will write me a letter in the next few days. OK.
I am glad that your Dad's health issue wasn't cancer. As far as your daughter, she is in the wrong and it is up to her to make things right. It really is sad that you can't see your grandchildren because of this but hopefully your daughter will make amends, sounds like she is the only one who doesn't realize she is the one with the issue.
MY DAD IS RESPONDING WELL TO THE TREATMENT! I'm so happy! He feels SO much better today too - he never said he felt bad but apparently he was feeling pretty worn out because today he was grinning from ear to ear and his color looked really good and he kept going on and on about how great he feels. They are even letting him get up and walk down to the cafeteria and wander around a bit - with the caveat that he is VERY careful not to fall or injure himself. So far so good. He had me bring him regular clothes so he doesn't feel or look like an invalid. He gets up out of the bed in the morning and doesn't get back in it till that evening - he sits up in a chair in his room or wanders around in the hall the rest of the day - when he's not on his smart phone debating politics online with strangers - LOL.
My mom is oblivious to so much, but she seems to be enjoying her sisters' visit. I spent most of the day with them today after we went up to the hospital to see my dad. When we had been there no longer than ten minutes - my dad thinks even less than that - my mom said suddenly, "OK - I'm hungry - let's leave!" She hasn't seen my dad since Monday, when his condition was terrible! I said, "Mom - we just got here - you haven't seen your husband for days!" She immediately looked chagrined and said, "Oh well, we don't have to leave right now, I don't guess."
All day long, as we went out to eat, drove out to a really cool nursery, and then went to a couple of antique stores - all of which my aunts were just LOVING - my mom would be very pleasant and then just suddenly say, "Ok - I'm done. Let's go!" To which one or all of us would say, "We're not finished yet - we just got here!" and she'd say, "Oh well, I'm done but I guess I can keep myself occupied till the rest of you are ready to go." Then she'd stand right there hovering over us, tapping her cane and sighing and saying, "OK - where are we going next? Aren't we just about ready to go?"
Oh my! It drove me a little batty but it was harmless enough. And apparently her sisters know how to handle her because they didn't back down one bit. They would pipe up and say, "No, we're not ready to go yet!" and just keep doing what they were doing, while my mom followed them around tapping that cane and sighing.
Oh, and my mom wore the same clothes she's worn EVERY DAY for the past four days - long polyester pants, and a turtle neck pullover with long sleeves - and a synthetic silk neck scarf tied around her neck. OMG - it was 105 degrees today!!!!!! And we were in and out of the hot car all day!!! I don't know how she stood it - and I don't know why she is wearing the very same clothes every day either. They aren't that clean. She didn't smell fresh, if you know what I mean. I am not sure how to handle this because she is very hypersensitive and a bit combative if she thinks you are saying she isn't dressed appropriately or if she thinks you're criticizing her. Ugh. Maybe I'll just let her keep walking around in those clothes till they rot and fall off of her. HELP!!!!
All that aside though, she seems very happy that her sisters are here and she's in a great mood. So both parents seem to be OK - for today. Whew.
Dad is home from the hospital. Doing great. He responded very well to the IVIG treatment and his platelet count is 131,000!!! Well within normal range. He was able to have the bone marrow biopsy and we are waiting on the results but his doctor doesn't really think he has leukemia or any significant bone marrow issue. They just have to rule that out before proceeding with the treatments for ITP. His ITP has to be monitored and he will occasionally probably have to have treatments to boost his platelet count but the long term prognosis is good. WHEW!
My mom continues to be happily confused and childlike. Hey, it beats the alternative, which was, prior to her treatment for bipolar disorder, angrily suspicious and paranoid and insanely jealous of me for some weird reason.
My daughter called me last night. We had a good talk - not about our own issues, though, unfortunately. But we had another family crisis (not health related but regarding my step son's girlfriend who was the at fault driver in a wreck that killed two other people - AUGH). This has been very upsetting to our entire family of course, and especially my husband, my stepson, and me. My daughter called to be sure we were doing OK with this emotionally - which was sweet of her and a step in the right direction. We didn't talk about the other issues and we didn't make any plans to get together or anything like that, but when we got ready to get off the phone, I just said, "Thanks for checking on us - talk with you later," and she said, "Bye, Mom - oh, I love you!" right before she hung up. So I think that door may be slowly opening. I'm not going to beg for her attention or just pretend nothing happened, but at least she made the first move toward me.
Glad to hear some things are better and glad your daughter called you with kindness regardless of the reason for the call. It is a positive step.
I have been thinking after your post about how she visited grandma at a late hour with children. The behavior was so off the normal reasonable that it made me wonder. Is it possible there is something really terrible that could be going on in her life and she conveys it through totally inappropriate behavior while trying to hide it?
Twisted logic I know, but you know her and what her tendancies are. Basically do you sense there is something deeply wrong that she can't/won't share so she is lashing out at those she loves/needs the most?
Glad to hear some things are better and glad your daughter called you with kindness regardless of the reason for the call. It is a positive step.
I have been thinking after your post about how she visited grandma at a late hour with children. The behavior was so off the normal reasonable that it made me wonder. Is it possible there is something really terrible that could be going on in her life and she conveys it through totally inappropriate behavior while trying to hide it?
Twisted logic I know, but you know her and what her tendancies are. Basically do you sense there is something deeply wrong that she can't/won't share so she is lashing out at those she loves/needs the most?
Just a thought
And glad Dad and crew are doing better
Kathryn, Thank you for the update. I am glad that you parents are doing OK.
I also had the same thoughts that theoldnorthstate had about your daughter's very late and very odd visit to her grandparents and attempted visit to you. When it could be a very blatant, self-centered "FU, I don't care about anyone else by myself" type of thing, it also could be a huge red flag where she is screaming out "I need help!!! but I don't know how to ask for it". With a new baby you also have to worry about post-partum depression or psychosis, or she may may be just overwhelmed with caring for four children and homeschooling or financial problems or marital problems or abuse or any number of things.
Glad to hear some things are better and glad your daughter called you with kindness regardless of the reason for the call. It is a positive step.
I have been thinking after your post about how she visited grandma at a late hour with children. The behavior was so off the normal reasonable that it made me wonder. Is it possible there is something really terrible that could be going on in her life and she conveys it through totally inappropriate behavior while trying to hide it?
Twisted logic I know, but you know her and what her tendancies are. Basically do you sense there is something deeply wrong that she can't/won't share so she is lashing out at those she loves/needs the most?
Just a thought
And glad Dad and crew are doing better
Thank you and yes, you are right on the money. There is a LOT wrong with her life and I think she feels powerless. Some of it is her fault and some of it is just bad luck. But none of it will get fixed till she accepts responsibility and addresses some of the issues (long story short, she and her husband are pretty clueless when it comes to money management and she got out of the military, burned through her separation pay and then her husband's job in the oil and gas industry nearly dried up due to the slump in the industry), and makes some changes in how they have structured their life and finances. But for whatever reason, they can't seem to get on the same page on this, and so things are really tight for them, though from the outside, everyone else can see that they have options they're not availing.
So she's very frustrated and stressed - but instead of working together on their issues, she is lashing out in anger and jealousy - at least that's how I see it. She is particularly jealous and bitter toward my husband and me (because after 35 years of work, we're not struggling financially), and her older sister and her husband, because he is still in the military, as an officer, and they are doing well.
But none of us can help her financially. I can't just start giving them money - because they don't handle finances well. She really regrets getting out of the military - but then she and her husband were very unhappy when she was in the military - I think she just forgets that.
Honestly, when someone is unhappy in every situation, you have to start thinking that the common denominator is THEM. I think she expects life to be perfect. I hate to break it to her, but life as an adult can be very tedious and difficult and frustrating. Take for instance, my own life. Yes, we are fine financially and I thank God for that every day. But that doesn't mean we don't have struggles, frustrations and heartaches. I mean, my gosh, look at the past two years in my life! It's really been rough. But I just refuse to allow myself to wallow in self pity or get depressed. I'm a very solutions oriented person, and a long time ago, I realized that the first step in ANY solution in my life seemed to involve changing something that I was doing. She hasn't reached that point - she's still blaming others. At least that's how I see it.
Kathryn, Thank you for the update. I am glad that you parents are doing OK.
I also had the same thoughts that theoldnorthstate had about your daughter's very late and very odd visit to her grandparents and attempted visit to you. When it could be a very blatant, self-centered "FU, I don't care about anyone else by myself" type of thing, it also could be a huge red flag where she is screaming out "I need help!!! but I don't know how to ask for it". With a new baby you also have to worry about post-partum depression or psychosis, or she may may be just overwhelmed with caring for four children and homeschooling or financial problems or marital problems or abuse or any number of things.
I do think she is overwhelmed. That's why I have been trying for the past two years to be there for her, to be supportive, to be helpful, to be generous. And I have been. That's why it's been so frustrating to become the object of her anger and disdain.
I am very worried about her but I am not going to put up with abuse, ongoing accusations, and screaming tirades from her. I think she knows that I'm willing to help her. But she's going to have to behave better toward me. I've been trying to help her for two years and with this mentality she has, she doesn't seem to even see it.
Example: Just last week she told my son this:
"I'll give you an example of how insensitive Mom is. I went over to her house a few months ago, and told her that our electricity had been cut off for four days. She said Oh that's too bad and then she showed me her new pillows from Pier One."
OK. If that had happened it would have been a very insensitive thing for me to do and say. Except it didn't happen. AT ALL. SHE MADE THIS UP. Now - she did tell me that her electricity had been cut off - for one day, and they paid it the next day and it was turned back on. She told me this WEEKS after it happened, while I was visiting her at her house, and when she told me that, I said "Oh, my gosh, sweetheart, don't ever let that happen again! You should have told us! We would have helped you!" and she said, "Well, I guess we're not desperate enough, because as you see, I still haven't signed up for classes and the $700 a month that the Air Force will pay me to take two online classes." Which is true.
Now - I did buy some pillows from Pier One and showed them to her when she was over at my house - this was apparently after her electricity was cut off but before she told me it had been cut off. So I'm sure she thought to herself, "Great - my electricity was cut off while my mom was out buying pillows!" BUT HOW WOULD I HAVE KNOWN THAT????
Then she proceeded to tell my son this - which was really over the top:
"By the way, I don't know why you are so supportive of Mom. If you knew the things she says about you, you wouldn't be such a fan of hers."
Them's fightin' words right there. But thankfully my son didn't fall for it. Instead, he said, "Really - so what does she say about me?" My daughter proceeded to tell him that I told her that I worried about him because he is such a risk taker, that I worry about his careless disregard for danger, that I think he needs to get treatment for his PTSD (he spent 20 months in a combat unit in Iraq), that I think he should go back to school with his VA benefits so that he can make more money and so that his wife doesn't have to work as hard if they decide to have kids, etc. And my son said, "Well, just so you know - she's said all of that directly to my face, so I'm not surprised by any of that. Or upset with her. She's just leveling with you and with me."
This was all just last week, so there's a lot of seething, vicious anger just beneath the surface with my daughter - directed at me. This makes it very difficult for me to help her. I'm really not sure what I should do, but I do know that I am not willing to be her whipping boy or the object of her anger, and I am not going to help her and then be slandered to my own family by her.
It's a perplexing issue. I honestly think she needs professional help.
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