Is This the Beginning or the End? Or Maybe Just the Middle…

(Editor’s Note: We welcome a new blogger, BreeAnna, who just joined our site yesterday. You can connect with her here.)

I haven’t quite decided where my story starts.

Technically it was  in 2000 when my mom was diagnosed with RSD, a chronic pain condition, but I was only 11 then so I didn’t so much as caregive as just help out with what I could. Back  then she was still mobile, still doing good and my dad and sister were still around.

But my sister graduated high school and moved out. Mother having her good days and bad. My dad working out-of-town sometimes, gone four days, home for three. They technically married April of 2001, after she was disabled. After they knew it was chronic and that she would never work again, that it would get worse. I have a kid at age 15 (11 days before I turn 16 in 2005). I finish high school, graduate with honors in 2007. I get accepted into Cal Poly University, while raising my son, and helping out around the house and with my mom.

Fast forward some years, my dad has had enough. He says he is “tired” of her disability. He just can’t keep doing the same thing and not get anywhere. That she is stronger than it but she has given up so he is leaving.  The day he left (January 5, 2010), he sends me a text saying don’t worry about anything, he is leaving but I don’t have to worry about financials, or anything else. My sister moves back in, and my boyfriend moves in. Okay fine, we can do this!

February 2010: My sister finds Mother on the ground, not moving, not conscious. Boyfriend and Sister get her back up and awake, but she is really slow thinking, tired. She goes into the hospital for three weeks (I think, memory is a little fuzzy right now). They are not sure what happened or why, but she is switching letters up (u & n, m & w), weakness on right side. After everything, no diagnosis. Well the doctors and paperwork say “Undiagnosed  Stroke.” Here comes on speech therapy, physical therapy, etc. She gets better, almost 85%. My dad during this time, comes in, visits in the hospital some but not much. He doesn’t do much at all, I am left to handle the medical bills, the appointments, the therapies.

Over the last two years, Mother has high anxiety whenever she talks to, about or with my dad (since diagnosis of RSD she has had problems with anxiety, depression, etc) so we avoid him. Plus, he hasn’t been following through with what he says, i.e., paying bills on time (with my mom’s money, not his). I barely talk to him, getting random text messages asking how I am doing, small replies saying fine or good. My mom getting random texts about money or they need to do this (since they are still legally married). My boyfriend being amazing, driving me to the city bus (to school), taking my mom to all her appointments( since I don’t drive), watching my son when I am not home. In November 2010, Sister moves out and very far away.

We get in our routing. Me to school. Kid to school. Boyfriend (I’m going to refer to him as Hubby also) driving us around, taking care of Mother. He is basically in control of all her appointments and health, while I do what I can.  Mother is still mobile, doing what she can.

This goes on till November 2011. Holidays are upon us, which is a stressful time because I have to split up my holidays between my dad/grandparents, my mom, and Hubby’s family, which causes my mom to stress out more plus the normal holiday depression that comes with being disabled (and left out).

Thanksgiving is great. I give my dad the slip and don’t have to visit with him, thank goodness. I make a great big lunch on Thanksgiving for my mom: chicken with cheese, green bean casserole, potatoes, plus much more. and then we get her out of the house (a feat in and of itself) over to my hubby’s family house (10 minutes away) to have another Thanksgiving. She grabs the newest member of the family and holds her all evening, playing and letting her sleep. She is having a good time. She starts complaining about her pain level so we give her her normal meds and head on home around 9:30.

We get her home, in bed, tucked in and everyone heads off to bed. She stops me as I am leaving her room and asks me, “If I am alright? If I am feeling okay?” I brush it off and say I am just tired (really, I am exhausted from doing two Thanksgivings for her, I am irritated and in pain from working all day). Me and Hubby plan to go black Friday shopping so we stay up, her room being quiet and no button pushes (we have push buttons all around the house in case she falls or just needs our help), so we don’t even check on her throughout the night assuming she is asleep. Right before we head out, I peak in and she appears to be asleep, making snoring sounds. My boy is fast asleep in his room.

We head out and  come home after a bit, peak in on everyone. Everyone still asleep, we go to bed to. We all sleep in till noonish and I know something is up. I check on Mother. Still asleep. Snoring sounds. I talk to her as I would to wake her up. She doesn’t budge. I go and her and nothing. She is not making snoring sounds, but more of a gargling sound. She has thrown up on her pillows (that wasn’t there before). We call the ambulance and they arrive and they go SOOOO SLOW!   They finally get her bagged and moved out 45 minutes later (yes, really).

She has been in hospitals/rehab since. We are working to get her home but we are unsure of when. We don’t know what the future holds or how life is going to work out.

11/25/2011. End of nice simple, easy caregiving. Beginning of something (not sure what yet).

Middle of my care giving story?!

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11 thoughts on “Is This the Beginning or the End? Or Maybe Just the Middle…

  1. Avatar of BreeAnnaBreeAnna Post author

    Please disregard the typos.. Hopefully it makes sense. But anyways, Feel free to ask questions, I am an open book. I’ll be writing more as we find out what is going on with everything.

    Reply
  2. Avatar of Roaring MouseRoaring Mouse

    Breeanna, Welcome!!!

    I’ve been with this group since October-November and you’ll find that these are so of the best most supportive caring people you can run into. I am truly honored to be a part of this group.

    When your post showed up in my in-box this morning and the first few words had RSD I knew I had to respond. My husband was initially diagnosed with RSD before they changed it to Chronic Neuropathic Pain. This was mostly because he didn’t have any body parts that were blue or change to blue on a constant basis. Though his right hand temp can come down to 76degrees which equates with his level of pain. (Kinda sorta..) Please keep us posted on what the newest diagnosis is. I have a connection with the RSDSA if you need it.

    Yes…I too have run into the people who don’t want to be around while he has pain and try to pass it off on as something else on either societal side or the medical side. Frustrating ain’t it?! But anyone who can be around RSD and have understanding and patience non-stop like you do for your mom is a hero in my book!!

    I am hoping you’ve had better luck than I with getting her RSD treated and acknowledged in the medical system then we have been through. It can be a very tough climb. He is now on an un-orthodox medication regimen which we’ve had a lot of success with.

    Please keep us posted and know that HUGs are there for you!

    The Roaring Mouse

    Reply
  3. Avatar of DeniseDenise

    Hi BreeAnna–You have an amazing spirit! You such fight in you–it’s quite inspiring. I think, in a caregiving situation, the beginnings and endings constantly flow. Something ends and then something else begins. A good beginning is blogging here with us. :) Glad you’ve joined us. I look forward to your updates. :)

    Reply
  4. Avatar of BreeAnnaBreeAnna Post author

    Well the RSD is still her original diagnosis, or now referred to as CRPS type 1. Though I still look into other diagnosis and will look into the one you mentioned.

    One major thing I guess I left out is the November 25, 2011 is when she had a confirmed stroke, hence why she is in the hospital still.

    Reply
  5. Avatar of JaneJane

    Hi BreeAnna:

    Welcome to the group. I take care of my daughter who has several life-threatening, chronic illnesses.

    This group has been a God send to me. I’m sorry that you have had to go through all these things with your mom. It is wonderful that your hubby is so supportive.

    Hugs:O)
    Jane ~mom to Nicole, 17 yo, VSD, PAH, Eisenmengers (dx 1/22/10)
    BHJS (2/4/11)
    “You’re braver than you believe, and stronger than you seem,and smarter than you think.”

    Reply
  6. Bette

    Hi BreeAnna,
    Welcome! My husband and I and three children, take care of my mother who had a stroke several years ago and was diagnosed with vascular dementia four years ago.

    I’m so glad you found Caregiving.com. You will find much support and encouragement here. I found this wonderful group in 2009. There are great listeners here.

    I’m sorry for all the challenges you’ve faced with your mom. Your perseverance is truly inspiring – thank you for sharing here with us.

    I look forward to getting to know you and your family.

    Reply
  7. kristin

    Hi, BreeAnna! Welcome to a wonderful community of caring people. I care for an 86-year-old woman with stage 5 Alzheimer’s. I am impressed with your ability to accomplish so much for yourself and still deal with all that caring for your mother entails. You and your hubby are a great team!

    Reply
  8. Trish

    Welcome, BreeAnna! I echo the others in commending you for your strong spirit and perserverence. You have such strength in dealing with all that you’ve had to deal with (and still go to school!). I care for my brother who is 46, is disabled and has had lifelong epilepsy. The Caregiving.com group is beyond supportive and caring and knowledgeable. I’ve been with the group for a little more than a year (hey, guys, where’s my anniversary present??). :-) Looking forward to talking with you more. Take care.

    Reply
  9. Avatar of KathyKathy

    Hi BreeAnna,

    Welcome to caregiving.com :)
    My goodness, you certainly have a plate full. You should feel so proud of yourself in continuing your education among all of this :) YAY for you!
    I care for my Husband. He has Lewy Body dementia. (think parkinsons symptoms and Alzheimer symptoms)
    I hope you find and take advantage of the wonderful support offered here.

    Reply
  10. Avatar of ejourneysejourneys

    Hi, BreeAnna — Welcome! I am sorry that your Mom and you all are faced with so much. You and your Hubby are doing extraordinary work.
    I care for my partner, who has multiple sclerosis that acts like traumatic brain injury (including dementia).
    I’m relatively new here (less than a month). This is a fantastic, supportive group. Truly a blessing.

    Reply

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