Just saying

thready
thready Member Posts: 474
edited March 2014 in Colorectal Cancer #1
O.K. it is 2:44 am here and I am awake. I got a call from my Dad yesterday, he is 83. His wife was diagnosed with severe dementia about a week ago and my Dad called yesterday because he does not know if he can take care of her anymore. She was washing her hair blow dryer with the spray nozzle and the hair dyer was plugged in, he quickly unplugged it and all is well. She also "wanders" and it is still cold there. He lives in the mountains in Colorado, I'm in Texas and my family won't let me go help him until I have finished treatment and have recovered a bit.

There are other family members but not much help. The "local" doctor has gone against the recommendations of doctors in a larger city to have home health come in and help. The local doctor has also discounted the help of medications like aricept. It sounds like he is milking Medicare.

I know that there is nothing I can do except be another set of eyes to make sure she does not hurt herself and to give my Dad a break from this 24/7 job. Going to help would let him know that he is not alone.

Then I must work on income taxes. Enough said about that.

And to think that 7 months ago I was a real person, not a "cancer thing". My neighbors use to stop by, friends would call, but since September 3rd they have all disappeared. I use to have actual hair, I could think, see and hear (side affects from oxi). My thoughts were about quilt patterns, colors of fabric, new inspirations for designs and staging for photo events. I had a job, I was productive, I should be half way through a masters program. Now I can't even leave to help my Dad-how pathetic is that! All creativity is gone and I'm ugly and look like a ratty old toilet bowl brush.

Well, 99.9% of the time I would say at least I am not dead yet. I usually am a very positive person. I always have a glass half full , but I think someone has even knocked that over, so tonight I needed to vent. Tomorrow (actually later today) I will feel better, I will count my blessings, I will look for the humor in everyday life. Tonight I will enjoy another episode of "Project Runway" and I will "make it work". All will be good. And you know dementia is worse than cancer. At least I can remember who I used to be!

Sorry for the vent.
Jan

Comments

  • abrub
    abrub Member Posts: 2,174 Member
    #2
    My mom has dementia, too
    I have a lot of empathy for you - a situation in which your hands are currently tied. At least my family have engaged full time caregivers for Mom, who still lives at home, but I share your concerns. See if you can't get a referral to a neurologist for your mom to confirm the diagnosis and get the correct meds in place.

    I, too, was unable to care for my mom, as I couldn't go to her during treatment. Yes, dementia is worse than cancer. We lose the person, and are left with a shell, occupied by an alien. We can't mourn our loss, because our moms are still technically with us, but the moms we knew and loved are gone.

    Vent away - there are those of us here who truly understand.

    Alice
  • Jaylo969
    Jaylo969 Member Posts: 824 Member
    #3
    You bet I understand
    I think you wrote my story here.Probably many of our stories...

    Taking care of my invalid Dad WAS my job. VA paid me a stipend and it was perfect for me because afterall I would have been caring for him anyway, money or not.Then I went into hospital and that was the end of that.Can't lift & roll a 190 lb man when you have a resected colon and sutures from stem to stern.The good thing is I found someone else to come in and help my Mom take care of him.

    I believe cancer and the treatments involved do take a lot from us but something else is inserted in place of what we have (temporarily?) lost. Things that are growing everyday such as appreciation for family & friends, compassion for those who, like us, hurt.I actually think most of us become better people....different and sometimes 'strange', but yes, better.We certainly develope a better sense of humor..we HAVE to! That's how we can declare that we look like a ratty old toilet bowl brush and actually laugh.

    Don't apologize for the vent. I did it too a couple of days ago and it helped. That is part of what a support group does....let's you vent, listens, and helps lift your spirits.

    I hope your spirits are uplifted this morning.

    -Pat
  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    #4
    You're PRETTY To Me :)
    Hi Jan

    I found your post very sobering this morning. I read about what your "past life" was and what it is "right now" and only now BTW, and it made me think long and hard about that. What you put into words, is what most of feel once everything begins to change.

    I had few friends, hardly any family too, and they all scattred like cockroaches when the lights are turned on. After we lost Sundance, things really cratered emotionally for us.

    You've got a friend in me - and I still want to see you - just waiting for you to get better - but maybe we should not wait that long? Maybe just a few minutes to say Hi? I'll come and see you?

    Gotta' support my Texas gals :)

    Aging parents are tough - I'm there but it is nothing like what you are going through. They really need to get some help there, because you will wear yourself out trying to care for someone while still trying to take care of yourself right now.

    You're not ugly either - you are a very warm and caring woman - your internal beauty will override any "temporary" changes the cancer has done to you.

    You call me!
    -Craig
  • lizzydavis
    lizzydavis Member Posts: 893
    #5
    Sundanceh said:

    You're PRETTY To Me :)
    Hi Jan

    I found your post very sobering this morning. I read about what your "past life" was and what it is "right now" and only now BTW, and it made me think long and hard about that. What you put into words, is what most of feel once everything begins to change.

    I had few friends, hardly any family too, and they all scattred like cockroaches when the lights are turned on. After we lost Sundance, things really cratered emotionally for us.

    You've got a friend in me - and I still want to see you - just waiting for you to get better - but maybe we should not wait that long? Maybe just a few minutes to say Hi? I'll come and see you?

    Gotta' support my Texas gals :)

    Aging parents are tough - I'm there but it is nothing like what you are going through. They really need to get some help there, because you will wear yourself out trying to care for someone while still trying to take care of yourself right now.

    You're not ugly either - you are a very warm and caring woman - your internal beauty will override any "temporary" changes the cancer has done to you.

    You call me!
    -Craig

    There is a light at the end of the tunnel. Hang in there!
    There is a light at the end of the tunnel. Hang in there!

    I went through the surgery, chemo and changes. It was a rough ride but I am doing much better now. Keep telling yourself that this will be over soon. "I can do this." I had those terrible days too. Keep positive thoughts going. We are here for you and pulling for you!

    One thing you can do at your home for your Dad's wife is to do some research on the Internet. Look up their home town. See if there are volunteers who will come in and help with some things for them. You can check all sorts of agencies, local nursing schools, CNA (certified nursing assistant) programs, your Dad's religious organization. Write some letters or make calls to see if these people can offer some assistance until the time when you are back on your feet. Another idea is to send some photos and cards to them. It might lift the spirits. Also, I try to send free samples through the mail to my in-laws who are 91 and 88. Walmart offers some samples through the mail. You could also get a "care box" together for them with some dark chocolate, dried fruit, nuts, heart healthy bars, etc. Just some suggestions. Best wishes to you and your family.

    Lizzy
  • SandyL
    SandyL Member Posts: 218
    #6
    lizzydavis said:

    There is a light at the end of the tunnel. Hang in there!
    There is a light at the end of the tunnel. Hang in there!

    I went through the surgery, chemo and changes. It was a rough ride but I am doing much better now. Keep telling yourself that this will be over soon. "I can do this." I had those terrible days too. Keep positive thoughts going. We are here for you and pulling for you!

    One thing you can do at your home for your Dad's wife is to do some research on the Internet. Look up their home town. See if there are volunteers who will come in and help with some things for them. You can check all sorts of agencies, local nursing schools, CNA (certified nursing assistant) programs, your Dad's religious organization. Write some letters or make calls to see if these people can offer some assistance until the time when you are back on your feet. Another idea is to send some photos and cards to them. It might lift the spirits. Also, I try to send free samples through the mail to my in-laws who are 91 and 88. Walmart offers some samples through the mail. You could also get a "care box" together for them with some dark chocolate, dried fruit, nuts, heart healthy bars, etc. Just some suggestions. Best wishes to you and your family.

    Lizzy

    Oh, Jan...
    I so feel the pain you are having now, but I just know that you do NOT resemble a ratty ole toilet brush. But it was a clever statement, none the less. You still have a sense of humor and that's a good thing. In times like this that is important. I hope that today you are feeling much better about things and have figured out a way to be of help to your dad from a distance. Lizzy has given you some ideas and I hope that will help you. You are a good daughter to be even thinking that you could go there before your treatment ends. I hope you are having a better day today.
    Sandy
  • 5678dance
    5678dance Member Posts: 39
    #7
    abrub said:

    My mom has dementia, too
    I have a lot of empathy for you - a situation in which your hands are currently tied. At least my family have engaged full time caregivers for Mom, who still lives at home, but I share your concerns. See if you can't get a referral to a neurologist for your mom to confirm the diagnosis and get the correct meds in place.

    I, too, was unable to care for my mom, as I couldn't go to her during treatment. Yes, dementia is worse than cancer. We lose the person, and are left with a shell, occupied by an alien. We can't mourn our loss, because our moms are still technically with us, but the moms we knew and loved are gone.

    Vent away - there are those of us here who truly understand.

    Alice

    Not yet...........
    My mom is still OK, but I have noticed a few things, and have talked to her about them. I asked her to see her Dr. and she agreed. My grandmother had dementia. I was a child when it happened, but still remember what she and the family went through.

    I have seen her through breast cancer, open heart surgery, and a knee replacement. If something would happen to her right now, while I am undergoing treatment, I would have to reach out to others to help.

    As others have stated, a lot of my so called friends have not been around since I was diagnosed. I asked a couple of them why, and they said they just don't know what to say. Some of them treat me like a china doll. With others, I can tell that they fear "catching cancer" from me, as if it were some virus!

    I have had others who have come through for me, in ways I never imagined! I found I don't need a lot of friends, only a few "angels!" It was hard at first for me to ask for help, as we all want to be independent, but I have gotten over that. Do your parents have a circle of friends, or some neighbors of theirs that you could reach out to? It may give you some peace of mind, if you can find just one other person who cares. Don't be afraid to ask.

    Kathi
  • Sonia32
    Sonia32 Member Posts: 1,071 Member
    #8
    Jan
    You vent away girl this is what this board is here for and we are here to listen. Hugs
  • AnneCan
    AnneCan Member Posts: 3,673 Member
    #9
    Jan, I am sorry for what you
    Jan, I am sorry for what you are going through. I know it is extremely hard to see loved ones going through pain + feel like either you can't help or can't help enough. I go through that often too; I was the one people often come to for help + now sometimes I have to ask for help. I am with Craig; I doubt you lokk like a ratty old toilet brush. You are still a "real" person. We can be so hard on ourselves. Most of my hair fell out with irenotecan, but it is growing back now. My husband says I look like Demi Moore - I wish! but it makes me smile when he says that. I guess he is talking about her "GI Jane" days when her hair was so short + he must be adding quite a few years to his picture of Demi. A big part of beauty is how we look at ourselves + if it is available I would recommend the Look Good Feel Better program; it helps women deal with cancer-related issues + how to use make-up etc., to your advantage. As far as friends go, I have been really lucky with most of my friends but a few have been disappointing. Would you ever consider inviting a few over for tea/coffee/wine etc.? Some people honestly don't know how to open the door but if you open it for them they may push their way through + surprise you with all they have to offer. Since my diagnosis, I have found the 1st time I see someone seems to be the hardest + then it gets easier, espeically for them. Good luck, I know things will be better for you soon!

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