Teresa - I haven't posted here in a long time either - but I do check in to see how things are going. Your mom has come so far. Thinking of you all often. HUGS!
Hey there. I wanted to let you know what is going on with mom. It seems like a lot of people ask how she is…and it is so difficult to really sum it up. So I’m going to try.
Mom has come so far since her accident! Wow, we are so excited to see how much she grows each day. She is currently at home. Dad has a hospital bed in their room for her. The bed inflates and deflates to help her avoid pressure points. He pushed his bed off to the side and sleeps there (well, when she lets him sleep). She stays mostly in this bed in the room. She likes to be there. Most of the time, Dad uses a lift to get her up into the "Geri Chair" in the living room. (You can look it up online to see what it looks like.) He usually leaves it in the reclined position…but lately she has been sitting more upright in it.
She still is able to talk to us. A lot of you have spoke with her on the phone. If you want to do the same, just let me know and when I am over there, I will call you. She can carry on a conversation, but it seems like she is more able to answer or respond to what you say than ask you questions. Although, lately she has been asking us questions about what is going on and what happened to her. We think some part of her memory has definitely been affected. She really gets frustrated when she can’t remember things or when she wants to say something, but it comes out differently. That happens a lot. She is now able to follow some commands. The other day she was straightening out her leg on the bed and it rubbed on the sheets making a funny sound. Mom said, "What the hell was that?" We started laughing. I told her to do it again and she proceeded to move her leg in the same way, trying to make the sound. If I show her Dylan and say, "Isn’t he cute!" She will say, "Yeah, he is." Or if you ask if she needs a blanket, "No, I’m okay."
She also has moments where she gets really upset and flies into a type of rage and freaks out and it seems like she hallucinates. She will say that her "kids are killing her" or "Oh, God! Please." And gets paranoid and yells at "them". But I will say, "mom, I’m your kid and I’m not killing you. Kevin (my brother) is at home and he isn’t killing you. Then she says, "no that’s not what I mean." When I ask her what she means, she just says, "Never mind". So again…she’s upset by something but can’t come up with the right words to explain it. We think that maybe her feet start to really hurt her and she can’t verbalize the pain. She seems to go into another consciousness when this happens. It takes Dad awhile to settle her down. It’s like you have to get in her face and have her focus on you. This is really stressful because we can’t make it better for her. Sometimes she will do it all night long. My aunt was here visiting for almost two weeks and she was subject to that too. But after you get her to calm down, she is fine. Her hands and feet are still contracted and I think painful too. We think that this is the reason why she gets angry. Dad massages her, soaks her hands and feet, gives her medications and feeds her through her feeding tube, changes her diaper, bathes her, washes her hair, does range of motion exercises with her and does anything else needed to take care of her. He is amazing and I really admire what he has done for her.
I try to help as much as I can. I am working full time and when I get home, I take care of Dylan. I do try to visit mom every day. When I go over I try to do what I can. When school gets out for the summer, I will be able to watch mom more for Dad when he needs to go to work. When I am not available, he calls a lady named Romanita. She sits mom and takes care of her. She was recommended by the social worker from the hospital. She is really good with mom. Poor Dad, though. She hardly sleeps at all, especially at night. I don’t know what energy he is living on. He keeps telling me that he wouldn’t have it any other way. When my aunt was here, she had my dad go get a hotel room to sleep all night. She watched my mom. I want to do the same, but I need my sleep to take care of Dylan and work. I also nurse him. There is no way I would be of any help to him if I were sleep deprived. If you knew my mom, you and I both know that mom would be pissed at me for taking time or energy away from the baby. She was always afraid that she would be a burden on me or Kevin in the future when she got older. I always told her I would take care of her and she would say, "no you won’t, I would never put you through that." That, I know, comes from all that she has went through with her family.
My family keeps telling me that it is okay that I can’t be around all the time and it’s not expected of me…because I have Dylan. I guess what is so hard is that I used to be available "emotionally" and "physically" for mom anytime she needed me. I didn’t have a baby then. But now that I have Dylan, I can’t be "available" and it tears me up inside.
Medically, she still seems to be doing okay. It’s hard because she only sees the home nurse occasionally because they are only allowed so many visits. Her body right now has a type of rash on it. The nurse said it may be all the meds she is on. So Dad has been putting cortisone cream on her body every day. She also has weird bumps forming around her palms that look like blisters. She picks at her hands all the time. We put Neosporin on them because they turn into sores. It is so hard to take mom to a doctor’s office, so we rely on the nurse to take information to the doctor. I think she is in really good shape and am so glad she is home with us. I’m really looking forward to more improvements.
Thank you so much for the update, Teresa!
I never read this journal where I am not completely amazed at how far she has come, I always knew she could do it! Everytime you update she has gotten better and better, so that is just wonderful!
I know what you mean about the "available" thing..my Dad is in very poor health and while he doesn't have to have the constant care that your Mom does, sometimes I feel that I should make the most of his time, you know?! And I often feel like not being there with him is making me a horrible person. It is something I struggle with all the time, so I know exactly what you are feeling. I just try to remind myself of what my Dad wants and that is to live my life and take care of my family...hovering over him 24/7 won't change anything and I know he knows that I love him and he is happy to see me whenever he can. Once again, it is NOT like your Mom's situation...but I also believe that she wants the same for you. You would be a great help, but she would want you with Dylan. You are an awesome daughter & Mommy...don't forget that!
I am always praying for your family...the strength you all have just amazes me. I can see what made you who you are, your parents are both amazing people.
(((((BIG HUGS))))) and thank you so much for the update!!
Still thinking of you and your family often Teresa. It truly amazes me how strong your mom is. What a woman!!!! Tell her that your pg.org girls are praying for her and we have been all the way through!!!! Give your family hugs from me!!!
Mama to Caroline (02/06) and Grace (04/10)
She really is a miracle, huh? I still remember that lady trying to get you all to give up. You are doing much more for your family than you give yourself credit for. I'm so glad she's come as far as she has -- I'm with you -- keep bringing on the improvements!
Btw -- I had plantar fascitis in my foot and it hurt like CRAZY in the middle of the night -- it would just cramp up really tight. I bet you're right about her feet -- ouchie.
More prayers and love coming at ya!!
It was so funny:
So my dad was walking quickly into his bedroom while I was sitting in there telling my mom about my day. Mom sees him and says "I love you" and my dad didn't reply....so she says it again..."I love you"...again no reply...so she looks at me and chuckles and says...."I guess not!"
I laughed so hard! Dad goes "what happened?" I told him and he just laughed and told her he was sorry and that he loved her too.
Well my dad has been doing such an amazing job taking care of my mom! He exercises her every day. She is now able to move on command. Yesterday a nurse from Kaiser finally came to see my mom. She was amazed at how far she had come. I guess before, Kaiser was too busy to take on my mom's case, so they outsourced to another home health agency. Well now Kaiser is taking her back and sending a new "social worker" over to evaluate mom's needs. It looks like she may get a new round of therapists. I pray that they will start ongoing therapy with her. I would love to see her get into a wheel chair or walk a few steps to the bathroom. I also hope that they find something to help her sleep. Grrr! My poor dad!
The nurse is thinking that the sores on her hand is an infection. That must be what is causing her blood sugar to be so darn high.
Gosh, it has been way too long. Almost a year. Since having Dylan, I haven't been able to be around as much as I would like. Dad has been working full time. He has a lady, Romanita, come in and take care of her. This lady is amazing! She comes at 4am and stays until 3pm every day. She tells me that if my dad can do it (wake up early), so can she. She takes care of my mom from head to foot. She picks up her supplies, bathes her, and loves on her. I just love this woman! It really has taken a lot of the worry from me. It's hard on my dad financially, but it is the only thing he can do. Nurses or therapists who come in to check out mom, always tell my dad that whatever they are paying her...it isn't enough.
Well status now is she is still not able to move or turn herself in bed. She can move her arms and legs....but that requires effort. She ulitmately has really no muscle mass left.
Romanita has worked with the nurses to decrease my mom's insulin down by 10. Mom has suddenly started talking more, is not as sluggish and is more animated. She is sleeping better and is allowing my dad to get some sleep.
I don't think that she will ever walk and possibly won't be in a wheel chair. But gosh...who the heck knows. She can't use her hands or feet because they are kind of curled up. She still eats through the feeding tube in her belly. Ultimately...it's not 'mom'...but she has the same laugh and the same soft skin and the same eyes.......so that's enough for me.
God do I miss her though! I have so many questions about Dylan......hmmmm. It's just really nice to be able to go to my BB and get advice. I could always ask my MIL....but it's not my mom. I love my MIL though. Well that's enough for today.
I was just thinking of you, Teresa! Like a few hours ago!
Good to hear the news on your mom-- Romanita sounds like a dedicated lady. I want to clone her.
Dylan will know his grandma-- it's great that she is talking more. Your dad sounds like a dedicated, loving prince.