A Haven for Vee

Thursday, April 1, 2010

Counting the Cost of Caregiving

So you are considering caring for a parent or a grandparent in your home... The Bible tells us to *"count the cost" of any major decision. Therefore, I have a few things I'd like to share with you followed by a little story from my own experience.

Have you always gotten along well with this person? If so, having this loved one come to your home may work very well; if not, your chances of success are less than a snowball's in Haiti.

Are you able to empathize with this person's loss of autonomy? If you can place yourself in his or her shoes, it will help you understand why s/he clings to control or why s/he is experiencing depression, both of which are very common in the elderly.

Speaking of clinging to control, when the chips are down, are you able to speak firmly into this person's life? Can you say when a bath must be taken or when a walker must be used or any one of a number of musts? If you couldn't possibly, you will soon find yourself run over by an elderly loved one who is trying to remain in control to the detriment of his or her own health, not to mention yours.

Is your home safe? By that I mean, are there scatter rugs about? Are light switches easily accessible? Are the floors level? Are there cats that scratch? Dogs that jump? Is there room to pass in the hall? If there are any concerns about your home, carefully consider what having an invalid there will mean.

Also, are there at least two bathrooms in the home? If not, it's important to know that one's own health is put at risk when one must regularly wait for bathroom time as will often prove necessary with an elderly person in residence.

What about the dietary needs of the individual? Are you willing to prepare multiple meals to satisfy the needs or even whims of your guest?

What about the extra work load that a guest requires? The laundry, the cleaning, the personal care requirements? Can you take care of another's most personal care needs? Can you give another person a bath? Can you clean another's dentures? Can you do this for your own ______?

Can you communicate clearly with doctors, lawyers, the IRA, Medicare, Social Security, etc., and so on?

Are you willing to give up personal time? Are you willing to give up music or whatever.it.may.be. that your guest finds upsetting? In my own circumstance, I have given up seeing my grandchildren as often as I'd like as my loved one finds them "too loud and boisterous" and I must be careful with music.

If you've answered yes to these questions, you may well be a candidate to step in as a personal caregiver for someone you love. If you've answered no, this is a good way of sorting out what kind of commitment you are willing to take on.

Caring for an elderly relative can be extremely rewarding, even when the elderly relative/friend doesn't seem to appreciate much of what is done for him or her. If your source of strength comes from the Lord and you need no personal recognition, not even a thank you, you will be better off for it. If you are leaning on the Lord and allowing Him to lead, together you may be able to see your loved one safely home (from this world to the next) without any appreciable time being spent in a nursing care facility. It is my prayer...

*Luke 14:28–30

***



As I pushed my grandmother into the examining room, the nurse asked me a bit under her breath, "How are you?"

I grinned at her as best I could and said, "One of us needs a pill. Perhaps it's me."

It had been the worst possible of days. Nan has begun to wander and she has already fallen three times. She hears water running in the night and can't believe that I am so careless as to leave the water on so she must go check. She hears music and can't believe that I am so careless as to leave the computer on or the radio on or the tv on and must go check. It's never her problem; it's always mine.

Trying to explain that she is scaring me to death is like trying to explain the theory of relativity to her. She waves her hand and says, "pah!"

The doctor does a cognitive test that my grandmother passes with flying colors. It includes writing, drawing, remembering things in series, and spelling forwards and backwards. I had no idea that my little nana could spell "toward" backwards. Goodness, I'm not sure that I could. In the end, the doctor says that her mind is very good. "I know that," she states emphatically.

"Then you are wandering about knowing full well what you're doing?" the doctor asks gently.

"Yes."

Wonder why I'm sitting here with a five-page information sheet on Alzheimer's with her name on the top that begins...

"A common difficult behavior associated with AD is wandering..."

30 comments:

  1. Oh Sweetie, I'm so sorry you are having these issues and your advice is soo well stated. My sister took care of our Mother until she could no longer handle the falls..the caregiver is one of the least recognized and the hardest of all responsibilities - please take care of yourself {easier said than done} and be able to see when you can no longer do this - and give yourself permission to cry, feel badly, feel resentful, feel used the feel guilty for even having feelings at all.. - then smile and know you are loved, respected and you have every right to own your feelings and need make no apologies for them.

    And come here when you can so we can be of service to you..

    Love and hugs,
    -Colleen

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  2. Oh Vee... I hear you all the way out in Illinois. I'm so happy that at least the nurse recognized you and ASKED about YOUR well-being. My recent experience at the hospital with my MIL was that the staff totally ignored me causing a mini-meltdown on my part.

    The auditory hallucinations are difficult because the person doesn't want to entertain the thought that the lovely baritone voice they hear in the middle of the night is NOT the local church choir practicing loudly! I appreciate your explanation of the "control" thing. My senior does things like climbing ladders which put her at risk for serious injury. Although it may be an attempt to hang on to their autonomy, I see it as a total disrespect for the person that will be accompanying them to the hospital (again....) and caring for them in the aftermath. They are incredibly stubborn.

    I seriously feel like pounding the next person who waxes poetic about how wonderful it is that you are a caregiver. There's nothing wonderful or romantic about the situation. It's a form of insantiy.

    Having grown up in a multi-generational household you'd think I'd be prepared for this, but in those days our grandparents only lived into their early to mid 70's before dementia would take it's hold. Our 75-yr. old cousin is now dealing with having to constantly monitor his 96 yr. old father to make sure he's not climbing on the roof again. The stress and worry is ruining HIS health and I often feel mine slipping away as well.

    Another book on the subject....sorry.

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  3. I read this post very carefully and the last little bit twice! The reason is because, my mother who will be 80 yrs in Oct. has us all concerned that she is showing signs of Alzheimer's. She does wander at night and has been known to have conversations and make coffee with people in the kitchen at 3 a.m. (dad is usually sleeping, which is a whole other issue). Recently while she was in the hospital with congestive heart failure my sister asked that they test her for dementia. She passed! No alzheimers/dementia, she's brighter then any other woman that's almost 80 and shows all the "normal" signs someone her age may show! So the doctor says! But those of us closest to her, see all the signs, like you with your grandmother, the wandering, falling, repeating and so on! So what are the answers? I am grateful for your post and feel for you living, in your home, with that daily! Have a great day and Thank you for sharing!

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  4. Oh Dear Vee, I know both from experience and professionally. My mom had alzheimers and I was a Home Care Coordinator for the Home Health Agency I worked for. There seems to be a stigma attached to have a loved one go to a senior center. That is what I was taught to call them. I know you know all about them. I have you and your loved ones on my prayer list and my heart goes out to you.
    Blessings
    QMM

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  5. Dear sweet Vee, such wise advice in this post. To be a caregiver is truly self-sacrificing. Thank you so much for sharing with us, as we do not know what lies ahead on our own path. hugs and love, Dawn

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  6. -sigh-

    My heart goes out to you, as you know. Imho, you have taken on too much, and you're beginning to see this.

    What I wish for you, is clarity.

    The kind of clarity, not clouded by the "duties," which are preached at us.

    The kind of clarity, which is necessary for self-preservation.

    Gentle hugs, my Dear Friend...

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  7. I cannot add to what you have written and others have commented on, Vee, so I will just send up a prayer for you, for your family and for your Nan. God bless you.

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  8. You have done it again!

    Hit the nail on the head and stated it very well.

    We are waiting and watching for the future in our case. One doesn't know for sure what they will do until faced with the situation.

    Know that you are in my prayers.
    I don't see anyone judging you, thankfully, nor should they for any decision you make in this case.
    Only you and yours are walking this particular walk.

    Love,

    Becky K.

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  9. Vee, Where dO I start,?
    You are one of the most inspiring, if not the most inspiring person that i have met in blogland. Your devotion to your family has always touched my heart, not to mention your sharing of your devotion to God. I have never left here that i wasn't inspired, challenged and motivated.
    I missed your last two post, but now have caught up. It seems I am always catching up on something. lol

    Your post about commenting is right on target, and I could have,should have, and might just write mine. I agree with all that you have written, so eloquently put... I am now going back to reread it.

    Sweet pictures from grandchildren just melt my heart.yours remind me of those that i get from my dear ones, and I have filed them away not only in a booklet, but in my heart too.
    Thank you for your honesty and sincerity.

    May I wish you and your family a most blessed and Happy Easter weekend.
    Hugs,
    Sue

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  10. Oh Vee. . you are such a wonderful girl ..and I send you hugs as you try to sort out this time in your life with your grandma.
    I smiled at the need for you to have a pill.
    I think we all wonder what will become of us if we live to need care .. .she surely could never have guessed that you would be there so wonderfully for her .. .blessings.

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  11. We need to chat. I hear everything you are saying and could probably add a few more things too, Vee. And my Dad had a very rapid form of Alzheimers. You do not want to know what having an elderly father run down the middle of the road screeching "she's abusing me" when I am trying to get him out of the road and certain death does to you.
    Love and a huge hug, and thank heavens for a nurse who clearly sees well.

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  12. oh dear, i don't know how you do it!

    i pray that He will reward you with
    every blessing to surpass the toll this
    has taken on you and john.

    "for the joy set before Him . . ."

    love,
    lea

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  13. Hey, prayers are being sent up for you this morning as you make decisions about your sweet Nan's care. Big hug to you friend~ Vickie

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  14. I'm so glad to see a post on this subject because it is a situation that many of us will find ourselves in at some point and it often happens without much warning. When my mom's Alzheimer's progressed to the point where her living situation had to change I found it daunting to suddenly be in charge of her care. Now that she is gone, I feel glad to have had that time to spend with her, but I would be less than honest to say it wasn't tough. In our case mom lived in an assisted living center, but every fall, hospitalization, hallucination, etc. required my attention. I can only imagine how much harder it is when you are caregiving in your own home. My heart goes out to you.
    One last thought on the matter, I am seeing the toll caregiving takes on my brother-in-law and sister. When my sister had her stroke she was a very independent, highly educated woman. Now, nine months later, she is living at her mother-in-law's house reguiring around the clock care. My brother-in-law is doing a wonderful job caring for her, but often when I talk to him he sounds completely exhausted. I know that my sister hates to feel like a burden too. I feel bad for all of them.
    Anyhow, sorry for rambling. I do think your post today is a really important topic as you can see.

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  15. Vee I will e-mail you my response as it's long and with a history.

    I think you are being very brave but don't let misguided feelings of duty and guilt win over reason, and yours and your husband's own personal right to health and happiness.

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  16. Oh, bless you, Vee!

    ((((hugs))))

    Leah

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  17. Just found you........you are a champion in my book.

    Nuff' said.

    Blessings,

    Jo

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  18. I could never, ever be a caregiver except for my hubby. Anybody else would not live through the ordeal, LOL.

    Bless your heart for your patience and sacrifice. {{{hugs}}}

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  19. A huge hug to you and lots of tears and prayers for all of you. For probably 10 or more years, my grandmother wandered at night. Sometimes she was awake and sometimes not really. It was a combination of not being able to sleep well and ???. She didn't have Alzheimer's, high blood pressure or much of anything other than just plain old age.

    One thing that was often overlooked, tho, was a urinary tract or bladder infection. Grandma would get really weird when she had one, and it would take us a little while to figure out what was wrong. We younger people can usually tell; I understand that the feeling/pain isn't felt so much in older people. Falls, confusion, and hallucinations are some symptoms of a UTI or bladder infection.

    PS I used to have to get quite firm about Grandma being tested.

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  20. OT ...

    I know. Commenting Off Topic is not supposed to be done. ,-)

    But neither do I want to send an email, because you simply do not have the time for personal email.

    So ... How is your back?????????

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  21. Hugs to you, Vee! Is it still too late for you to 'count the cost'? You are a dear...and your grandmother sounds like a dear as well...but 24/7 might need some re-thinking.

    Wishing you and yours a most blessed Easter weekend.
    Judy

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  22. Vee,

    This is a wonderful list for a caregiver to have, it is frank and perfect in every way. You know Vee Dementia is tricky. The caregiver knows way before a doctor ever makes a diagnosis. With Alzheimer's Disease, they have good days and bad ones. If you take someone with dementia to the doctor on a good day, they will pass with flying colors. Never doubt your gut instinct.

    Someone very close to me has Dementia, which are the symptoms of the disease which is Alzheimer's. My loved one wandered, and hid things, forgot words, got a little paranoid sometimes, and would get agitated alot. Constantly moving. Losing their balance, dressing funny, doing things in multiples.

    Keep reading, and keep taking time for yourself.

    I find if I don't have a break away, I am not as patient.

    Wishing you a peaceful Easter.

    Blessings, Karen

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  23. Vee,

    Leza Gibbons wrote a book especially for the caregiver. Have a look for it, it is really wonderful.

    Karen

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  24. Oh dear, sounds like you are going through a lot and thinking a lot. You have a lot of strength, so sounds like you are dealing with it with humour anyway, but it is still tough. Have you read "Still Alice"? It is a wonderful book about Alzheimer's from the ill person's perspective. Will not help the caregiver, except perhaps with some understanding, even if it is not what she had.

    My mother cared for my father in the home for 15 years with his progressive neurological condition. He was an alcoholic and also a very mean person at times. He drank whenever he could get it until his buddies stopped coming to the house. Dad was never really a conscious person that way, totally selfish like most alcoholics. I think it made his illness harder for Mum to deal with. He was a jerk, unappreciative, definitely in terrible need of help, but wholly uncooperative. At least he never felt sorry for himself, but was very, very self-centered, slamming doors, banging things. His family rarely came to help. Mum was IT. I don't know how she survived caring for this thankless man, honestly. It is a wonder to me, still, that it didn't kill her. So in reflection, your situation is at least better since (a) you love your Nan and (b) she loves you, at least when she remembers too.

    Hang in there darling. Happy Easter.

    xo Terri

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  25. I am so sorry you are suffering. I do understand as my husband and I lived with his mother for a year when she was suffering from dementia.

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  26. Vee,

    I am so sad to hear about Nana. To help you cope you might want to get the book, The 36 Hour Day. It has some great tips, advice, and helps for those who are caregivers to Alzheimer's or dementia patients. I have walked in your shoes with my precious mother-in-law. If you need a listening ear, I am here. If you need a prayer, I am here.

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  27. Thank you for this post. As our aging parents live longer, we are all facing some form of this, and I thank God for those, like you, who can provide this care. I am thankful that my mother and mother-in-law both have their sound minds, but we have weathered some physical problms. And it causes me to wonder what is in store for my own son as I age. I will pray for you and Nan. Such a struggle.

    Also, I will be sure that Cowgirl V sees this post. Right now she is gone the 9 hours away to visit her mother who has Alzheimer's, taking with her the newest little grandson, and knowing that Mom will not remembr him by the time they walk out of the room Such heartbreak! Love to you. C.

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  28. Blessings to you dear Vee. I do send hugs and best wishes your way as you have so much on your plate. I said a little prayer for you the first time I read this and another as I read it again.

    Enjoy your Easter, your grandchildren, and a little time for yourself.

    Jen

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  29. Hope you and your family had a very Happy Easter!

    Christ is Risen!

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