What would cheer you up when you were in the hospital?

Hello everyone,

 

My mother is currently in the hospital indefinitely due to complications with her treatment. She is fighting an inoperable anaplastic astrocytoma (grade III brain tumor). She has been having radiation treatment and for a while she was also taking Temodar (chemo pill). Well, she is experiencing a rare but very severe side effect from the Temodar known as myeloablation. Her bone marrow has stopped making new platelets, red blood cells, white blood cells, and we don't know when it will start again. She has to get blood and platelets every day. She's in a "positive pressure" room which is like being vacuum sealed to protect against germs since her immune system is completely vulnerable, and she has to wear a mask if she leaves the room. We as visitors have to hand-wash frequently! Even though they have to stick her several times a day to draw blood to test it or to give her more blood/platelets, she cannot have a permanent line put in because of her risk of infection.

So, she is very uncomfortable, and frustrated too, she's sick of getting stuck like a pig several times a day. She feels awful, probably from anemia, and sick to her stomach. I think her morale is very low, and I don't know how to cheer her. I brought her a teddy which she appreciated, she named him Radioh. 

 

I would greatly appreciate any advice on how to support my mother in this situation -- whether I should just let her feel frustrated, or try and make her laugh, or try and find ways to make her more comfortable, or what. I feel very impotent. Thank you for all your help.

Comments

  • Hussy
    Hussy Member Posts: 29
    I'm sorry you are going

    I'm sorry you are going through this and I understand how powerless you feel.  I hesitate to give any advice because I know everyone is different, but I can tell you about my husband's experience.  He too was sick of being sick and being woke up to get stuck at all hours of the day.  And seeing visitors all gowned and gloved made him feel like an alien. 

    Some questions: is your mom on an antidepressant?  Helped my husband a great deal.  Are her docs treating her for the nausea?  You say she is uncomfortable -- are you talking about pain?  Whatever the source of her discomfort have you discussed with her docs? 

    I found it was important to let my husband vent his frustration at times -- after all, he had good reason to be frustrated.  That doesn't mean you can't have laughing moments as well.  Just know that it's normal to feel different ways at different times.  Don't put pressure on yourself to be relentlessly cheerful. 

    Things that made my husband feel better: reading aloud to him; bringing in his favorite foods from the outside (if permitted by docs); his laptop, which let him "escape" his hospital room by watching a movie or surfing Ebay and which let him visit his friends on Facebook without having to entertain them in person -- which he didn't want because he didn't want people to see him so sick and he wanted the flexbility to just go to sleep if and when he needed to, not feel like he had to stay awake for a visitor.  Sometimes we would watch some absolutely awful TV show or movie and laugh about how bad it was.  You might also try bringing in some items from your mother's home to make it seem more homelike -- a favorite framed photo, a afghan or quilt for the bed, maybe her favorite coffee mug (even if coffee is not a permitted beverage) or the local paper, if she wants to keep up on events back home.   

    I hope your mother can be made more comfortable since it sounds like she will be there for awhile.

  • Meowycat
    Meowycat Member Posts: 66
    Hussy said:

    I'm sorry you are going

    I'm sorry you are going through this and I understand how powerless you feel.  I hesitate to give any advice because I know everyone is different, but I can tell you about my husband's experience.  He too was sick of being sick and being woke up to get stuck at all hours of the day.  And seeing visitors all gowned and gloved made him feel like an alien. 

    Some questions: is your mom on an antidepressant?  Helped my husband a great deal.  Are her docs treating her for the nausea?  You say she is uncomfortable -- are you talking about pain?  Whatever the source of her discomfort have you discussed with her docs? 

    I found it was important to let my husband vent his frustration at times -- after all, he had good reason to be frustrated.  That doesn't mean you can't have laughing moments as well.  Just know that it's normal to feel different ways at different times.  Don't put pressure on yourself to be relentlessly cheerful. 

    Things that made my husband feel better: reading aloud to him; bringing in his favorite foods from the outside (if permitted by docs); his laptop, which let him "escape" his hospital room by watching a movie or surfing Ebay and which let him visit his friends on Facebook without having to entertain them in person -- which he didn't want because he didn't want people to see him so sick and he wanted the flexbility to just go to sleep if and when he needed to, not feel like he had to stay awake for a visitor.  Sometimes we would watch some absolutely awful TV show or movie and laugh about how bad it was.  You might also try bringing in some items from your mother's home to make it seem more homelike -- a favorite framed photo, a afghan or quilt for the bed, maybe her favorite coffee mug (even if coffee is not a permitted beverage) or the local paper, if she wants to keep up on events back home.   

    I hope your mother can be made more comfortable since it sounds like she will be there for awhile.

    BRING HOME TO MOM

    My mom had a few long term hospital stays. Her main complaint was that she did not like the feeling of being "confined" to her room. So we would try and get her to walk to the nearest lounge to sit up and look out the window. We asked her doctor if she could wear her pajamas instead of the hospital gown. Or maybe a compromise of the bottom and an open like top. That made her feel better. We brought her certain tea, foods that were approved, her i-pad, made sure she had TV, her phone and chargers. On Holidays we brought a light up snowman, cards, bears, etc.

    The main thing is to make sure she has as many visitors to come at different intervals. This way she does not get tired out but is not lonely at the same time. All visitors should be told in advance that if she is tired or having a bad day when they come, the visit should be cut short. In my mom's case she always said she did not want visitors, but after they came she was in a more positive mood. Also make sure her hygiene is kept up-hair washed, makeup if she uses it, smells good, get her some fun slip free socks, etc.

    You sound like a great daughter.

    Keep up the good work.

    Hope your mom recovers soon.

     

    Nellie

  • Ouch_Ouch_Ouch
    Ouch_Ouch_Ouch Member Posts: 508 Member
    So sorry....

    When I was in cancer treatment, I was hospitalized a few times due to neutrpenic fevers from 5-FU. The last time, my bone marrow "took a vacation", as the doctor put it, and in spite of daily Neupogen injections, my WBC kept dropping down to 0.2. I was in an isolation room, but not kept isolated. I was told not to go out in the hallways during visiting hours, so I became "the night walker". I ended up getting 2 units of whole blood and 2 of platelets in one day (uncomfortable all by itself!), but I was nowhere near as sick as your poor Mommy.  >_<

    Smells brought on waves of nausea that the anti-nausea drugs didn't help - mostly plastics, cleaning products, the Pergo-type floor, even the normal saline they used to flush my medi-port smelled nauseatingly like model airplane glue. A kind, smart nurse suggested using peppermint oil to mask the smells (not the inexpensive food flavoring found in supermarkets, but the pricier essential oil from health food shops). My sweet husband dropped everything to procure me a bottle within an hour.

    The peppermint oil was a true life-saver!

    Visitors were important to me, especially my husband. It was the comfortable familiarity of seeing someone who cared for me and who would march right out to the desk to grill the doctor on what my labs were or to get the nurse on duty to move a little faster with the pain meds. Visitors really helped break up and shorten those long, dreary, sick days and helped intervene with the staff when I felt too sick to.

    I brought my own pillow and big colorful bath towels with me. I had some incontinences because of my treatment, so I had my husband bring me lots of my own underwear as I disliked those ugly disposable undies that the hospital provided. All homey and practical! I just used regular hospital gowns because of all the sweating from the fevers, though.

    Your mother is "uncomfortable" - if that mean she's in pain, please don't stand for that. There's no excuse for it, especially in a hospital. I received pelvic radiation which fried my bladder, vagina, rectum, and anal areas as well as my exterior skin. I was in a great deal of pain from it, especially with bowel movements - I would literally scream, clutch at everything within reach in the bathroom, and generally scare everyone anywhere near my room.

    I pitched a hissy fit about the pain so that the doctor tripled my Fentanyl patch dose and added morphine for break-through pain. I then had to convince the nurses to give me the morphine before an expected BM or what was the point? Once I received the blood products, my skin stopped sloughing off in bloody sheets and healing began, inside and out. My bone marrow "woke up" soon afterwards. I stopped the morphine when I went home and then weaned slowly away from Fentanyl. I was there only 9 days that last time, but it was excrutiatingly long to me.

    My heart goes way out for your Mommy. I hope her ordeal ends soon and that her bone marrow "wakes up" PDQ. Give her a virtual kiss from me.