teapot1

teapot1

Tuesday, April 3, 2012

CAREGIVING

A Guide to Caring for a Parent with Dementia at Home

It isn’t easy. You can know that, read about it, hear people’s stories, but until you do it, you don’t know how not easy it is.


You will pray for patience and compassion and feel frustrated, angry, and resentful.
 

Learn to be in the moment. When you’re getting her out the door, don’t reach back and try to close the door behind her. Keep your attention on her until both her feet are solidly placed on the ground and she’s balanced strongly on her walker. Then close the door.


Wrap yourself in a giant defense mechanism to keep away the reality of what’s happening to her. Because thinking too much about that will break your heart.


Marry a man who values family, yours as much as his own. Let him take care of you and her, and be grateful.


Argue with her when doesn’t want to take her pill or eat. Then feel guilty.


Feel guilty as often as you feel frustrated, angry, and resentful.


Try to temper your guilt etc. by telling yourself that you’re doing the best thing for her.


Remember that you’re doing this because you honestly believe it’s the best thing for her.


Treasure the good days, the times when she seems clear. Be grateful for the sense of humor she still has.


Try to get her out of the house at least once a week, regardless of how she protests that she’s too tired or doesn’t feel like going. When she’s out she perks up, notices what’s around her, and feels better.


Make little jokes to comfort yourself: She can’t be too bad yet; I haven’t found any shoes in the refrigerator. That becomes your touchstone, no shoes in the refrigerator. But it becomes less comforting when you start finding half a stick of butter that’s been in her walker basket for two days  or a dirty plate in a kitchen drawer.


Pick your battles. It isn’t important if she sleeps in her chair all day or doesn’t want to eat lunch. It is important that she gets to her doctor’s appointments. Use your energy on what matters most.


People will tell you: Take care of yourself. Make sure you get a break. You know you should do these things, but it’s hard to concentrate on yourself when your care is demanded almost constantly. So grab moments whenever you can. Be glad that she sleeps so much; it gives you a chance to get out to the store or walk the dog. Set up a monthly dinner date with your girlfriends, knowing your husband will be home with her. And a few times a year plan a night out with your husband: a Valentine’s dinner, the theater or a movie. You’ve learned that she’ll be all right for a few hours. You can be grateful for that.


Tell yourself that this won’t last forever. Remind yourself that she’s ninety-eight years old. Then remember with a shock that when she’s gone you’ll be devastated.


Take deep breaths. Keep yourself together, for her, for your husband, for you. Be glad that you’re able to do this. And keep going.














42 comments:

  1. Wonderful and compassionate advice, Elaine.

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  2. Wow! I have cold chills. Amazing. I hope I never have to be put to the test in this manner. Really not looking forward to my mom being 98. My grandma isn't even 98 yet. I'm glad you're able to do this for your mother. It is worth it, I'm sure. Keep the faith. You have a great attitude.

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    1. Thanks, Christie. Yes, it is worth it. It's easier to say that now that she's no longer living with us, but it's true--it's just easier to see and feel that once you've gone through it. Thanks for stopping by.

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  3. Thank you for sharing this, Elaine.

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  4. Keep going, must not be easy! Thank you for sharing this!

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    1. Thanks, Claudia. I appreciate your encouragement.

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  5. This is the first blog I've come across that I actually went and read all of your letters (all as in 3 but hey it touched me) my mom, my sister and myself were caregivers to my father for 9 mths while he slowly died of cancer. What your doing is amazing and it's hard, writing about it hopefully will help you through your journey. Good-Luck and look forward to coming back! I'm loving this challenge!

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    1. Thank you for the kind words. I'm sorry about your dad--I can imagine how hard that must have been. I find that writing about it and hearing other people's stories does help and gives me more perspective. I visited your blog too and will definitely go back.

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  6. Great tips. Not only for caring for the elderly but anyone with a serious illness. It's difficult on those around someone with a debilitating illness more than people realize. Thanks for sharing.

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    1. Thank you, Alyssa. Yes, caregiving is difficult. I consider myself lucky that my mom wasn't physically ill and was able to be with us for the time that she was.

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  7. wonderful tips. used to do some caregiving myself. Tough job, but worth it.
    Great A-Z post!
    Nutschell
    www.thewritingnut.com

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  8. Love it Elaine - you 'said a mouthful'. A dialysis nurse told my mom the other day that it was a credit to HER that I do what I do -she raised me right. So I guess ALL of our moms raised ALL of US right if we can do what we do.

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    1. That is true, Linda. I think it's so sad when adult children neglect or turn away from their parents--sad on both sides for the hurt that must have taken place. We're lucky that our moms were good to us and did raise us well.

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  9. This is filling with such loving and compassionate advice. I was primary caretaker for both of my parents and some days are really rough, but you get through it. When the end comes, you find you have no regrets. That is the best thing of all.

    Kathy
    http://gigglingtruckerswife.blogspot.com

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    1. I agree, Kathy. I know I won't ever regret that I gave her two extra years of being "at home" and cared for. I'm sorry that you had both parents to care for, but I'm sure you did it well and they were the better for it.

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  10. This is some really amazing advice! Thank you.

    DL Hammons @ Cruising Altitude 2.0
    Co-Host of the Blogging from A to Z Challenge.

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    1. Thank you--for reading and for hosting this challenge!

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  11. You've really nailed how to deal with this. Wow.
    Karen

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    1. Thank you, Karen. I hope someone else in this situation might find it helpful.

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  12. elaine. your situation doesn't sound easy, yet you seem to have a handle on it... in the best way.... through love and acceptance for what it is....

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    1. It has gotten easier now than it was during the time I wrote this. And you're right--the best we can do is to accept and love as best we can. Thank you.

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  13. You are such a patient and caring person. Your mom is so lucky to have you.
    Pam
    Quig Land
    A Pirate Looks Past Sixty
    Pirate Knitting

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  14. We lucked out because my Dad was so patient with Mom. They had over 60 years of solid marriage and even though Mom couldn't remember anything in the late stages, they both still laughed through the frustration. He was also very good at covering up for her.
    Best of luck to you.
    http://gail-baugniet.blogspot.com Theme: A World of Crime

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    1. Gail, your parents sound wonderful. It must be terrible to have this happen to your spouse. There is a married couple living in my mother's dementia unit, and I think about how terrible it must be for their children to have them both suffering from this disease. Thank you for your comments.

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  15. Good advice, and oh so true. It's hard to be a family caregiver, but there are some phenomenal people I know who do it for a living and are very good at it.

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    1. The staff in my mother's assisted living unit are just wonderful. I don't know how they do it, but I'm very grateful for them. It's good to be able to trust them with my mother's care. Thanks for reading.

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  16. I would add one thing to your incredible list, Elaine, hoping you don't mind.

    If you can't do this for your parent, don't do it. Hire someone or get your parent into housing where they will be taken care of. Caregiving isn't for every child. And that's okay.

    My momma and I are very close and I love spending time with her and being her taxi. I wish she would get out more and socialize more, but she is a stay at home person and has been for many years. I am always encouraging her to go with me here or there to no avail. We get groceries, she spends Fridays with me at my house and we get pedicures once a month together. That's about all I can get her out and about.
    Working on a vacation next winter, I cannot stand Michigan all 6 cold months! Hoping it works out.

    Still loving this idea and your advice and stories. ♥

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    1. You're absolutely right, Jo. It was a bit harder for me than I thought because I didn't realize the extent of my mother's incapacity; I was hoping that when we lived together we'd be able to get out shopping and doing things we used to do. I envy you for being still able to do things with your mom, even occasionally.

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  17. Amazing advise. Glad you posted this. It has obviously struck a chord with people.

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    1. Thank you, and thanks for reading.

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  18. Thanks for posting this Elaine, I really love the way you tell your story. It might not feel like it sometimes but you are blessed to have this time with your Mum. I look forward to your future posts

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    1. Thank you,Deb. Yes, I know I am blessed to have her still with me, even with her illness.

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  19. Hi, I appreciate your post today. My husband was in the mid-stages of dementia when he passed away nearly two years ago. He fell in May of 2010, and broke a hip. He had surgery to repair the hip, but never recovered from it. His name was Walter (but we called him Dub - short for the first half of the letter W.). Anyway, he could not understand the directions for therapeutic help. He was a diabetic, and had to have a permanent catheter in his bladder. He got a MERSA infection and that is what killed him. I was his caretaker until he fell and broke his hip. He lived two months after his fall. I never had any trouble with dealing with his dementia. I miss him. Ruby

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    1. Ruby, so sweet of you to come by and share your story. I'm very sorry about your husband. Breaking her hip was the turning point for my mom, too. She recovered well from the surgery but couldn't/wouldn't do the physical therapy afterward, so she's still in a wheelchair. But we were lucky because I understood that there was a possibility she wouldn't even make it through the surgery. She's a strong person for her age.

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  20. Very, very hard. I'm trying to visit all A-Z Challenge Blogs in April

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    1. Thank you for stopping by here, and good luck. I haven't yet had a chance to visit all the ones I want to.

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  21. This one hit home with me...

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    1. THank you, Maggie. Are you or have you gone through this, too?

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