January 19–Making room for more medical equipment…

One thing we have lived with for years now is the presence of multiple medications–on the bathroom sink counter, filling much of the space on the kitchen table, etc. Since coming home from the hospital in December we have added an oxygen compressor that runs 24/7, a nebulizer used every four hours throughout the day to administer the drug Albuterol, and most recently a machine used often by people suffering from sleep apnea to administer a higher level of oxygen for at least four hours a day. On Monday we will be getting a transport wheelchair (and we already have a shower stool and portable toilet). And the weird part of it is that while I would sometimes become impatient or annoyed with the way our house seemed always to be dominated by meds and such–now all I can think is “Bring it on–whatever will help–whatever will give us one more day or week or month.”
Our home care nurse made her weekly visit today. With things pretty status quo for a few weeks now I found myself asking her what it would look like when we would know we were beginning the downhill slide. She gave me some signs–L sleeping more, limited appetite, perhaps a lung infection of some sort.. I don’t know why I asked the question except that because things do seem to be stabilized I find myself slipping back into that old denial stage and thinking maybe things will get better after all. But just now a friend called and I went to hand L the phone and heard him say that he was ‘having a rough afternoon’–evident in the way his spirits seem dampened and his breathing seems more restricted and I know that it will not get better–only worse. All the more reason to cherish the good days–the good parts of days.

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4 thoughts on “January 19–Making room for more medical equipment…

  1. this could be my house for a couple of years before my husband died. he had pulmonary hypertension. we were married forty five years whe he died.thats going on three years now.in the end he had to stay in the hospital for good because there was no way to administer enough oxygen at home.he lived exactly a month this way. in a way this time was good. at home the pressure of this was talking its toll. here i relaxed with him a little more. we had some goo laughs interacting with other patients and staff. i have been fortunate that my son who lived with us was a godsend. he bought a house and let me come live with him. sometimes i feel guilty that my life is better since i dont have to live with his illness. he was a christian and was ready to go. i am glad he is not suffering any more. i am sorry for your loss and pray for your strength. diane

    1. Diane,
      Thank you so much for taking time to write!!! It’s so rare to connect with others who have known this terrible disease. It helps more than I can say to know there are folks like you out there who have traveled this path ahead of me. Take care of you. Anna

  2. Dear Anna,

    As to widowhood – been there, done that. Your long struggle takes a toll, but it can’t take away your happy memories. You’ll rediscover laughter. Even when we know the clock is ticking for all of us, we live in denial. I guess that’s part of whatever the ‘great plan’ for living is all about. My best wishes to you at this time, fellow SWFRW member.
    Patty Campbell

    1. REALLY appreciate the connection to someone who has been through this journey–I am blessed to have several wonderful friends who are helping me as well. Thanks for being in touch!!! Anna

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