Very bad day today.

karenbeth
karenbeth Member Posts: 194
in Caregivers #1
Frank tossed and turned all night, and neither of us slept. He wet himself twice. In the morning I did the laundry and then called hospice for a home health aide (thankfully, starting tomorrow). I helped him take a shower, then he went back to bed. Since his sister was visiting I went to the office for a few hours. When I came back he was still in bed. I thought it would be a good idea to get him up and sit on the sofa for awhile, but just in the few hours I was gone, he seems to have gotten worse, he could hardly walk or process information, we got stuck standing in the bedroom for a while, then I finally got him back to the bed. I am afraid that is where he is going to be from now on.

For the past few days Frank has been deteriorating physically and mentally steadily. I had a meltdown the other day because there was something wrong with the sound system (he had connected the TV, stereo, speakers, DVD, etc in a complicated way) and I couldn't fix it, and I couldn't turn to him to fix it. It made me feel so alone, and for the first time I felt like he is really starting to leave us. It's so strange...on Monday his sister and I took him out to lunch, he walked to and from the restaurant holding our arms. I think that may be all over now. I am so sad right now and I miss him.

I know for every bad day there is a better one. But today was bad, and I needed to let it out. Thank you for listening.

Karen

Comments

  • mswijiknyc
    mswijiknyc Member Posts: 421
    #2
    think you may be right hun
    Know I said I was out of town, but can't seems to stay away. I'm so sorry things are getting there in a bad way. Lots of hugs, and all the happy thoughts I can spare.

    Go dtuga Dia duit síocháin a mhairfidh tú tríd an am dorcha
  • 3Mana
    3Mana Member Posts: 811
    #3
    Cherish every day
    Karen,
    Even though these are bad days most of the time, just cherish them with your husband. It sounds as though he doesn't have much time left, so just let him know how much you love him. It's so very hard to watch them suffer and I always felt so helpless and I'm sure you do too, but just do your best.
    When you get frustrated, just come on here and post and we'll all be here for you to lean on 24/7. Be Strong!! Carole
  • luz del lago
    luz del lago Member Posts: 449
    #4
    3Mana said:

    Cherish every day
    Karen,
    Even though these are bad days most of the time, just cherish them with your husband. It sounds as though he doesn't have much time left, so just let him know how much you love him. It's so very hard to watch them suffer and I always felt so helpless and I'm sure you do too, but just do your best.
    When you get frustrated, just come on here and post and we'll all be here for you to lean on 24/7. Be Strong!! Carole

    Bad days...
    Karen, I am so sorry to read that your day was so confusing and bad. I remember how Dennis was, and it was hard to see how he deteriorated in so few days. I am glad to see that hospice will be sending someone. My poor dear was restless his last few days, and fell twice on me. I, too, decided, no more getting up for him. As silly as it may sound, make sure they bring a urinal for him. That was a reason, besides the restlessness, that made Dennis want to get up, to use the restroom.

    It is good that your relatives come and stay for bits at a time. Try to use some of those moments for yourself, be it a walk, a nap or whatever allows you to find some diversion at this time.

    I pray for peace and love for you both at this time. Take care, dear one.

    Lucy
  • lovingwifedeb
    lovingwifedeb Member Posts: 183
    #5
    I'm very sorry to see your posting Karen
    I came here tonight myself to do some real whining of my own but I think I will have to save it until some other time... I am very sorry to read about your husband, Karen... as I can guess each day gets just a bit harder to bear. I am realizing there is just no good way to prepare for the road we are on, I don't care how smart we are or how much we love them. Our blood does not run cold, we can not separate ourselves from them, our hearts beat as one.

    My mother was placed in the nursing home yesterday and hospice is now involved... there is no turning back for her now. She has lung cancer, emphazema and her heart is giving out. She refuses any corrective medical treatment. Pain control is the only option now. She is so very thin... my heart is breaking all over again, first my husband now my mother. Every breath is a struggle for her now. We have known this day was coming but none of us was emotionally ready I don't think. Awake for 5 minutes, asleep for an hour, she is tired. The dynamics of 3 brothers coming together who can't agree on priciple and a sister whose husband will most likely be facing the same future. A stressful mess in the making.

    My mother was a CNA herself, I was raised with stories of families who were torn in two in the end of the days. My mother's words will never leave me as I now watch her trying to catch her breath... "Debbie, the body knows when it is time, it starts to shut down one organ at a time."

    I'm trying so hard to hold on to who she is, the mother I want to keep with me forever. But it is the letting go that is killing me.

    Peace to you and yours,
    Deb
    lovingwife, to Bob, stage 4 melanoma
  • karenbeth
    karenbeth Member Posts: 194
    #6
    lovingwifedeb said:

    I'm very sorry to see your posting Karen
    I came here tonight myself to do some real whining of my own but I think I will have to save it until some other time... I am very sorry to read about your husband, Karen... as I can guess each day gets just a bit harder to bear. I am realizing there is just no good way to prepare for the road we are on, I don't care how smart we are or how much we love them. Our blood does not run cold, we can not separate ourselves from them, our hearts beat as one.

    My mother was placed in the nursing home yesterday and hospice is now involved... there is no turning back for her now. She has lung cancer, emphazema and her heart is giving out. She refuses any corrective medical treatment. Pain control is the only option now. She is so very thin... my heart is breaking all over again, first my husband now my mother. Every breath is a struggle for her now. We have known this day was coming but none of us was emotionally ready I don't think. Awake for 5 minutes, asleep for an hour, she is tired. The dynamics of 3 brothers coming together who can't agree on priciple and a sister whose husband will most likely be facing the same future. A stressful mess in the making.

    My mother was a CNA herself, I was raised with stories of families who were torn in two in the end of the days. My mother's words will never leave me as I now watch her trying to catch her breath... "Debbie, the body knows when it is time, it starts to shut down one organ at a time."

    I'm trying so hard to hold on to who she is, the mother I want to keep with me forever. But it is the letting go that is killing me.

    Peace to you and yours,
    Deb
    lovingwife, to Bob, stage 4 melanoma

    thank you
    Deb, Lucy, Carole, April, thank you for your kind words. You have all been, or are going through, so much, and I appreciate the support. I had a good cry last night while he was resting, then he actually sat up, asked for dinner, and walked into the living room to eat it. Then his sister came back and we watched the Yankee game. He fussed at me all evening for fussing over him. His sister broke down too because she left for Atlanta this morning and she knows she will likely not see him again.

    He hasn't gotten up yet today...I am not even trying to go to work the rest of the week so I can just relax a little. I'll be alone with him on the weekend, but if I need help I can call on friends. Oh, and I did employ the urinal a couple of nights ago, it took two nights but we have established a routine (I hope). I have trained myself to wake up the minute he throws the blankets off and I grab that sucker and help him go. I don't know why, but at night he has to pee 3 or 4 times.

    I hope you all have a good day...

    Karen
  • grandmafay
    grandmafay Member Posts: 1,633 Member
    #7
    karenbeth said:

    thank you
    Deb, Lucy, Carole, April, thank you for your kind words. You have all been, or are going through, so much, and I appreciate the support. I had a good cry last night while he was resting, then he actually sat up, asked for dinner, and walked into the living room to eat it. Then his sister came back and we watched the Yankee game. He fussed at me all evening for fussing over him. His sister broke down too because she left for Atlanta this morning and she knows she will likely not see him again.

    He hasn't gotten up yet today...I am not even trying to go to work the rest of the week so I can just relax a little. I'll be alone with him on the weekend, but if I need help I can call on friends. Oh, and I did employ the urinal a couple of nights ago, it took two nights but we have established a routine (I hope). I have trained myself to wake up the minute he throws the blankets off and I grab that sucker and help him go. I don't know why, but at night he has to pee 3 or 4 times.

    I hope you all have a good day...

    Karen

    Sorry
    Oh, Karen, I am sorry. Your posts reminded me of how I felt those last few days. It does sound like things are coming to an end. Doug kept going until just a few days before we lost him. We came home from Yosemite on Friday. He agreed to a hospital bed on Saturday, and early Tuesday morning he was gone. He did use a walker and then a wheelchair toward the end. I'm glad he didn't resist the wheelchair. Without that we would have been homebound. I'm also glad you can call on Hospice. They do make things easier, but no matter how much we think we are prepared for our loss, we really aren't. Just know that there are many here who have been where you are. Hospice didn't think we would lose Doug as fast as we did, but I knew. The day I told him I loved him and he wasn't able to respond with his regular, " I love you, too." I knew his time had come. It was just a few hours later that he died. I'll keep you in my thoughts. Fay
  • karenbeth
    karenbeth Member Posts: 194
    #8
    grandmafay said:

    Sorry
    Oh, Karen, I am sorry. Your posts reminded me of how I felt those last few days. It does sound like things are coming to an end. Doug kept going until just a few days before we lost him. We came home from Yosemite on Friday. He agreed to a hospital bed on Saturday, and early Tuesday morning he was gone. He did use a walker and then a wheelchair toward the end. I'm glad he didn't resist the wheelchair. Without that we would have been homebound. I'm also glad you can call on Hospice. They do make things easier, but no matter how much we think we are prepared for our loss, we really aren't. Just know that there are many here who have been where you are. Hospice didn't think we would lose Doug as fast as we did, but I knew. The day I told him I loved him and he wasn't able to respond with his regular, " I love you, too." I knew his time had come. It was just a few hours later that he died. I'll keep you in my thoughts. Fay

    thank you Fay
    Frank is still resisting the wheelchair. We will see what happends in the next few days. He is still walking and talking but mainly just sitting with his eyes closed. Still watching the Yankees, though, and eating pie.

    Karen

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