• Posted by Julie on November 10, 2008 at 12:26 am

    I have not been on the forum for a week. Between starting Hospice and having company something had to go and the Internet was it. We are having a break between visitors until Wednesday when my Mom from Portland, Or and my sister and husband from the UK arrive. I have not seen my sister since our Dad’s death. They are coming to see Dick while he is still with us.

    I have been feeling more stressed than usual and finally managed to see my Primary Care physician Friday. Between the knee pain and sleepless night my blood pressure had gone up too high for my liking. After much discussion she increased my antidepressant, added a small dose of a calcium channel blocker for my blood pressure and prescribed a few to Valium to keep on hand for those occasion when it all gets too much. The knee pain has been relieved by steroid shots in both knees and I will be getting knee braces and am using a TENS unit. I also will be getting a Handicap Placard of my own.

    For every day that Dick has appointments or visitors he seems to need a day in bed. He got up for my Birthday yesterday and we went out to dinner with friends and today he is staying in bed.

    We finally managed to get Dick into see the Lymphedema therapist and he will be seeing her twice a week this month and we will evaluate if it is helping. She will be teaching us at the same time how to do some of it ourselves. Also I took him over to a therapy swimming pool last week. Water at 95° and saline rather than chlorine. He really liked it and wants to do it again. I think it helped him to be where he was weightless even if he did fall back into the pool when he was drying his legs.


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    psee4me replied 16 years, 3 months ago 5 Members · 10 Replies
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  • Psee4me's avatar

    Psee4me

    Member
    November 13, 2008 at 12:50 am

    You are an incredibly busy lady with an enormous heart. You inspire me. I wish you a great visit with your mom & sister too and a happy belated birthday wish as well;)

  • julie's avatar

    julie

    Member
    November 12, 2008 at 6:11 am

    Good to hear from you Anne. You are free to PM me whenever you want it will not be intruding. It is just some days take all my time to keep things running. My sister is really looking forward to the sun and wamth here. I don’t know if it rains more in Alfreton than it did in Tring but i hear about the drear weather more. They have arrived and are at the hotel now to get some rest.

    Stephany i would have said it will settle down and you won’t have so many at once but today the aide came to give Dick his bath and 5 minutes later the Nurse from Home Health to draw his blood. This afternoon as the hospice nurse got here a neighbor also stopped by to say hello.

    I have started putting my phone on speaker so I can keep doing things and talk.

    I just hate it when people phone early. The early morning calls aI get are from the East and they don’t consider the time difference. 6:45 in the morning I am not waking Dick up and they won’t talk to me. They phoned 6 days later at a better time and then would talk with me.

    I hope your rest is better tonight. The carbon monoxide alarm started to beep at 6 a.m. yesterday the battery was low. Why can’t it go low in the middle of the day.
    My sleep is much better now that my knee isn’t waking me up.
    Julie in Tucson


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    stephany

    Member
    November 11, 2008 at 7:37 pm

    Julie, today we had two hospice visitors, and four staff members……a really long day, and it’s only afternoon.

    I sympathize, because when everybody finally left, I started to cath, and the phone rang, and I thought I could answer it, but….

    bad idea.

    Anyway, one thing at a time. Twenty minutes at a time.

    I got four hours of sleep, and then five, until the ****phone rang at 9:00 am.

    How’re you sleeping?

    Stephany in Iowa (also cold and rainy)

  • 's avatar

    Guest
    November 11, 2008 at 10:42 am

    Julie,
    What can I say? I think you are one fabulous lady to keep so strong and practical for Dick! I was so glad to read your postings and your recent PM as I was worried about you but did not wish to intrude.
    Carry on keeping strong and have a wonderful time with your Mom and Sister.
    Much love,
    Anne
    (Here in rainy, cold England!)

  • julie's avatar

    julie

    Member
    November 11, 2008 at 5:55 am

    Today I took Dick across town for his lymphedema massage. If feels like I spent all day getting him ready.
    In the morning I give him 3 sets of pills. First the pain pills plus senna with DSS, next the temporary pills (prednisone) then his regular pills. Take his glucose reading to find out if he needs carbs or can wait a little for breakfast. Next his asthma meds. Two inhalers Spireva and Advair. He likes to rest for 15 to 30 minutes after the pain meds. Put on the Lidocaine patch mid morning. Then it is wash up, put lotion on and then I put his compression hose on. Everything gets interrupted by his need to pee. Next is getting dressed. This takes some time as he is slow. Plus I have to put lotion on his shoulders and chest as he has a slight rash of unknown cause. These days he is eating in bed quite a bit. This morning it was breakfast in bed. I planned to start out the door an hour and 15 minutes before the appointment.
    Leave time from the drive way was about 55 minutes before. To leave I have to have the van backed into the driveway so he can wheel up to the passenger door. I have to have the front door and the screen door open and after he leaves the living room for the front porch I pick up the inside threshhold ramp and take it to the bottom of the ramp to help the transition from the ramp to the walk.

    I put a stool down for him to step on getting into the van. I back the wheel chair to the back of the van and open the rear door. Attach the lift, press the up button and guide the chair into the back of the van. Next I put the stool in the back seat, close the passenger door and walk around to get in the drivers seat. I have even left out a few steps.

    I had a reason I was writing this but was interrupted by our son phoning so I lost what I was going to say next. Probably something about I can never get 20 minutes clear to do anything.

    We stopped on the way home for me to pick up more Depends. Thanks to the discussion on the forum previously he uses a Depends pull up and puts an additional pad in. I asked Hospice about what they use and was told they use what the hospital uses and no one likes them. So I am still paying for the Depends. I found a site that says the European incontinence supplies are better. I think I will check for some online as leaking is still a problem.

    Dick is pretty concrete now and misses the context of questions. When he got on the table for the massage the OT asked if he was comfortable and he responded with how there was a pain in his side that wouldn’t stop referring to the bone pain in his ribs. She just wanted to know if he was OK with the massage table.

    I talked with the Hospice Nurse about the signs of dementia I was seeing and she indicated it was probably the cancer. Julie


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  • 's avatar

    Guest
    November 10, 2008 at 10:34 pm

    Hi Stephany…yeah clonazepam has a half life of 35 hrs…that one sticks around for a long time…the Ativan is about l0 to l2 hrs half life so they say….but i’m not so sure. When the little midget was kicking in my stomach after my husband died i found i had to take 0.5 mg. about every 5 hrs for him to stop.
    Julie thats so great that you can get Dick to a pool…saline at that. Thats the one thing my father could do even when in a wheelchair and he loved it.
    Both of you gals are amazing……..Pat

  • stephany's avatar

    stephany

    Member
    November 10, 2008 at 9:50 pm

    Xanax doesn’t work for a long time, but clonazapam (sp?) does. The docs took him off that, though, in Illinois, because they thought it was adding to his confusion, and he seems to be doing OK without it.

    Good luck with the Wellbutrin. If that doesn’t work, take a look at Celexa.

    We all need a little help, right?

    Hot tub sounds good. If Doran keeps on keeping on, I might try to get Robert to bring some friends home to carry him to the basement. That would be a great treat, but I don’t want to get his hopes up.

    He actually let me sleep four hours at a time last night, so I think I’ll make it.

    Stephany in Iowa

  • julie's avatar

    julie

    Member
    November 10, 2008 at 3:45 am

    We had a friend staying with us and between us we got him into and out of the pool. Plus we had a long line for his oxygen. What I did learn is not to bother with clothes. Next time he will be in his swimming suit and a robe. When he gets out I can dry him off put him in the extra heavy terry cloth robe and drive him home. No more trying to put on his compression hose while he is damp and sitting up. I couldn’t lift his leg to put them on. He can still walk a few steps so he walked from the wheelchair to the steps which are big and broad with a good handrail.

    We discussed several of the anti-anxiety drugs and settle on Valium. Xanax acts fast but doesn’t last long. All of them are addicting. I picked Wellbutrin as my antidepressant as it is also used for anxiety. It is not in the same category of drugs as Valium. I was a Psychiatric Social Worker and have seen them used effectively but didn’t think I wanted more than incidental use.

    If Ativan didn’t help Doran perhaps another one will. I think pain compounds the issue. The last time I took Valium was as a muscle relaxant when I had a pinched nerve in my neck and I was became agitated but Flexeril worked well but that was 28 years ago.


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  • stephany's avatar

    stephany

    Member
    November 10, 2008 at 3:10 am

    Oh, my, Julie. You are SO overworked. How did you ever get him to the therapy pool?

    Doran is begging to go to the hot tub or the shower, and after the nights we’ve had lately, I cannot bear to tell him we’ll try. It isn’t worth the cost.

    Hospice left some ativan, and I tried that the other night, but it didn’t help.

    (I mean for Doran….maybe I’m giving it to the wrong person:huh: )

    Stephany in Iowa

  • Julieanne's avatar

    Julieanne

    Member
    November 10, 2008 at 1:05 am

    It sounds like you have been staying busy. I’m glad your doctor is on top of your health issues. I hope your blood pressure will stabalize. I can’t imagine being the sole caregiver. There are four of us and it still gets overwhelming sometimes. I hope you enjoy the visit with your mom and sister. Take care.

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