37-40Jesus said, "'Love the Lord your God with all your passion and prayer and intelligence.' This is the most important, the first on any list. But there is a second to set alongside it: 'Love others as well as you love yourself.' These two commands are pegs; everything in God's Law and the Prophets hangs from them." (Matthew 22:37-39, The Message)
There's a fine line between thinking about challenges in the best possible light and denial. At least, I 've always found that to be true. I've been living in some denial of late and find myself now making difficult decisions. My denial has been that "I can do this." Worse yet it has been "I can do this alone."
In an attempt to get some help with my grandmother, Home Health was called in. It's been a regular nightmare. No offense to home health for when truly needed, it's a blessing. When it's not, it's an interruption and an irritation. Come to find out, what I really needed was respite care. Big difference.
And what Nan really needs is a caregiver who is not strung out by her needs/wants/demands, sleep deprivation, and providing constant 24/7 care.
A social worker has been called in to share the resources available. I've only been able to find one resource, which turns out to be a day care center for elders. Oh, Nan is so not going to like this, but it is going to be necessary for me. That's the rub. This is going to be a selfish move on my part to give me a break. I need a break. I, I, I, need a break.
It's too easy, as a Believer, to feel that one must do and do and do and wear oneself completely out on the altar of give, give, give. Yes, some of you have even warned me. I remember.
That's why when I read this quote by E.B. White, it resonated. I have no idea where Mr. White's faith stood, but I do rather agree, well all except for that first bit there about the "most interesting."
Self is the most interesting thing in the world—if not carried to extremes
—and life would be far less gallant and exciting if men were not
continually absorbed with watching what they're doing with their own
hands and marvelling at the stew which is simmering in their own heads.
I hate people who are not interested in themselves.
At first glance, that sounds mighty selfish, but let's think about it. Do you know anyone who is interesting who is disinterested in him/herself? I don't. I don't think it's healthy. And isn't it fascinating to read from the Word that we can only love others when we love ourselves?
Just want to add here that this is not going to become a blog about Alzheimer's or caregiving just as it wasn't one about cancer or mental illness or the other concerns my family faces. Rather, it remains about my simple journey through this life and what interests me. Thank you for joining me for the first time or the seven hundredth. What a privilege to have you visit.
(I've been exploring some sites that focus on Alzheimer's and wish to provide the links of those that have been especially meaningful to me. It will grow with time, I'm certain.)
Caring.com a wealth of information
Memory Bridge ditto
Memory Bridge Video 9 makes me cry
Moving Forward with Alzheimer's a wonderful blog!
Oh, one last thing that perhaps you can help me with. Does it bug you when a blogger turns off comments? Go ahead, let me know. I can take it. :D
Daycare sounds like a wonderful solution. Giving it a try will not hurt. In order for you to help your Grandmother you must be sane...my dear Vee. This should help.
ReplyDeleteThere are no easy answers here, are there? We don't truly know what you are going through each day. So, take what each of us says with a grain of salt and know that your readers love you and wish the best for you and your Grandmother.
As for the comments...All I can say is some of those Sunday posts cry out for a huge "Amen" and I don't get to let you know how much they mean.
But, you do what you feel is best.
It is Your lovely Blog.
Becky K.
It doesn't bother me at all. A couple of my favorite blogs rarely allow comments but provide an e-mail address if anyone really wants to respond.
ReplyDeleteYou must take care of yourself. I learned this the hard way. In the 1990s, I was going through so much stress with my husband's illness and Christopher's ADHD symptoms (one would never believe today that he was hyperactive).
I have had more than one doctor tell me chronic illness can come on one because of living with stress day in and out.
There were things I should have done to make my days calmer. I'm paying for it now with illness.
Thank goodness you are fining alternatives to 24-7 care of your Grandmother. NO, you are NOT selfish! You are entitled to a life too, and you are going to make yourself sick if you don't get some relief. It's a wonder that you are somehow expected to care for her in your home at all, given that she does not have all her faculties and has special needs.
ReplyDeleteRegarding turning off comments - it's your blog, so follow your heart! I will come and visit with you, whether I can post a comment or not!
Oh Vee...I am so glad you came to the point where you matter to yourself. You are not in this one alone you have your beloved too right? Together you really need to remember self for your sanity.
ReplyDeleteI really quite enjoyed this post on self and found myself saying amen on the part that people are far more interesting when they care a little about themselves.
It doesn't matter to me if you have comments on our off.. ..I stop by and smile when I leave regardless.. .do what works best for you. I have found that if someone wants to give me a piece of their mind, they'll find a way to give it.
No Vee it does not bother me if a blogger turns off comments. If that is done there is a reason. When I was in Home Health I would recommend a book I think the name is "36 hours," a book to help folks dealing with an Alzheimer's patient.Please do not feel selfish, you cannot take care of her if you don't take care of you. Blessings
ReplyDeleteQMM
Yesssssssssss "Sweetie," it does bug me when Comments are Turned Off. That being said, that's MY problem. If the blogger needs to turn Comments Off, she has the right to do so. Repeat, being bugged by it, is MY problem. :-)
ReplyDeleteAs to what you/we put in our blogs, that too is an individual choice, in my humble opinion. No one else can get into my head, to know why I blog, as I do. Nor should they. Each blogger blogs as fits her feelings, that day, that hour, that minute. And let the readers/chips fall as they may. ,-)
Gentle hugs...
"Yes, some of you have even warned me. I remember."
ReplyDeleteYou mean... That I am not the only one who has harped on this, to you?!?!?!?!?!?!?!?
Others have said, you can't make yourself "do it all," all the time? Or even a little bit of the time?
Amazing! I thought I was the only pragmatic [some might say "hard-hearted"] reader here. Whatever... I am soooooooooooooo glad you have come to this conclusion. Before you yourself, go down in a heap.
-sigh-
Gentle hugs...
oh sweetie, you are not being selfish! You need to have a break and to take care of yourself or you won't be of any use to antone else. You may be surprised, the outing to daycare may be a good thing for your grandmother too! Holding you both in my prayers.
ReplyDeleteI would have to say the decision to have or not to have comments left is personal! If I am truly troubled by something, I appreciate the comments if left. That being said, I am glad you are recognizing that you need a break. You should not feel guilty for this, as I am sure that Nan, in her right mind would wish that for you! As you know, and have left me much appreciated comments, with my Mom's passing, one sister in particular was/is my parents "caregiver" (...money handler, doctor visit taker, etc.). She, my sister, wore herself out because she wanted to be that main caregiver. Not until Mom's final days, and not quite sure she to this day recognizes it herself, did it come to light how mind exhausting of a job it was for her! I could go into a lot more detail, but I think you might possibly get it! Needless to say, things don't need to be put on "one person's" shoulder in situations like this. And IF there is truly no one else, then YOU need to put yourself first and in doing so you will be able to take much better care of Nan!
ReplyDeleteI hope I made some sense in what I just said! Have a wonderful day Vee, God is blessing you too!
LOL...well, you know me... if you have comments off and I want to make a comment, generally I just go to the previous post. Sometimes I just have to say "thanks for sharing this." Today is one of those days, too. My grandmother -- beautiful, elegant, classy, kind, believer that she was -- had Alzheimer's. I saw my sweet mother and precious aunt go through what you are. It is one of the hardest things to go through. It is good you have John, but I cannot imagine what strains it puts on a newlywed couple. Notice I said "it" and not "Nan." Because it is the illness, and not your grandmother, that is causing the stress and strain. You must do your very best to keep yourself and your marriage healthy. And not just for "self" but also for the Lord and for those you love. If we stay rooted in Him, He gives us "power, love, and a sound mind" to tackle those things which would cause us to be fearful. And Alzheimer's is a fearful thing, so part of that is knowing when to rest ourselves -- physically, mentally, or emotionally. You will need to do that regularly when confronting this illness. You will be more effective for everyone, including yourself, if you do. So glad you are finding ways already. Praying for you...
ReplyDeleteChristi
I've been worried about you dealing with the stress of caring with your grandmother, Vee. I'm SO glad you've come to this conclusion. Yes, you MUST do this. You cannot take care of your family if you don't take care of yourself first. If you're worn to a frazzle, how do you think you can do your best for Nan and John and everybody else??? I think this is a good idea so research away and see what's available in care for Nan to give you and John a break. You're practically newlyweds, for Pete's sake. Y'all two need to spend some time together going places and eating out and having dates and picnics and staying home and doing nothing but just "being". Re-charge your batteries!
ReplyDeleteAbout comments. I sometimes want to say something, BUT a blog is personal to the person to whom it belongs (see, I can use good English grammar), and so I think it should be up to you, dear Vee.
Now I've bashed you with a wet noodle for not taking care of yourself, go and have yourself a good day and feel fine and dandy about your decision! I'll bet John will be glad, too! He is a saint!
Big hug!
Yes, you need respite so that you can recharge and be the woman God intends you to be to your husband and other family members,including your grandmother. I'm glad you're making this decision.
ReplyDeleteComments on or off don't bother me - there's always the move to another post or an email!
Lorrie
You are doing the right thing, Vee....no guilt necessary. I'm sure there are no perfect solutions for the situation you find yourself in...but you need time to recharge so you can be all the things you need to be (a wife, a mother, a daughter, a friend...and a granddaughter). I hope it works well for you all!
ReplyDeleteAs for comments on or off...that's fine by me. On Sundays...I kind of like 'no comments'. If I have something important to tell you...I know how get the message through...one way or another.
No, it doesn't bother me, Vee. Not at all!
ReplyDeleteIf you get an option of respite care, take it. It saved my sanity, believe me. Dad was in for 2 weeks. I nearly disgraced myself by considering cartwheels down the high street. And I loved him dearly. I just SO needed some time to be a Mum and a friend again. Me. I had lost me. Day care is also brilliant. Even one day a week. Grab it. Granny will have to adapt.
(Big hug from Switz.)
I am such a talker, I don't like it when I see comments turned off!!
ReplyDeleteI think you should take any option available to you. Remember that the quality of care you extend to your family is dependent on the quality of care you give to yourself.
I was reading Becky's post and I agree with her, do what you want to on your blog as far as comments go! I will survive! LOL!
I think the Daycare is a good idea. Maybe your grandmother will even grow to like her day out. So many times we just focus on the person who needs the care and not on the care giver. We all need time for ourselves to be a better person for everyone around us. :-)
ReplyDeleteYour blog is the only one I read that has the comments turned off at times. It really makes no difference to me. I will read it either way. :-)
Vee, It is your blog. Do and say and write what you want.
ReplyDeleteRemember, this isn't about just yourself or being selfish. First, you do have your self to take care of. Several have said it before; you aren't any good to anyone if you aren't well. You have a husband, a mother, children, and especially your grandchildren (who are going to grow up way too fast). I'm positive that they love you and would like to spend some time with you, too.
(Side note: I think it sure wouldn't have hurt any of my family members to have spent more time with their grandmother/greatgrandmother - whether it was uncomfortable for them or not. Might have taught them some tolerance, patience, and a different kind of love.)
vee, you could write about peanuts
ReplyDeleteeveryday, and we would still enjoy it.
i respect that you close comments on
sundays.
and i'm thrilled you're getting some
help with your grandmother.
blessings,
lea
Vee, I fully support your need for respite care - you are crazy to think you can do it alone. You can't. No one can. My mother was SOLE caregiver for my Dad for 15 years because they live in a rural area and she didn't qualify for paid help and couldn't afford to pay herself/ourselves for all-day care. So she left him alone when she worked, with no help from his family, and did it all in the evenings and weekends, including coming home periodically during the day to check on him (no thanks to the pricks she worked for, who hassled her about this).
ReplyDeleteSuffice it to say, I GET IT and it can be hell on earth. All I know is, I am happy my mother is still alive and I am surprised she is with all the stress she endured. Nights of Dad waking her in the night banging cupboards, almost setting the house on fire, falls in the night, fecal incontinence in Walmart. It is not pretty and I don't know how she did it. And his family has never acknowledged all she did. But she knows. And he knew, and I did, and her family knew. And God knows. And that is what matters.
But in the end, you have to save yourself as best you can because you cannot be up all night and function the next day and deal with all the demands. It sounds like she should be in a care home. Are there no good ones in the area? Then you can enjoy visits and not have to be caregiver. I do not believe that family should always assume that role, no matter how much we want to. We have the right to do it and love them, but you also have the right to your own life. Mom did not take that right and almost lost her life for it (heart attack right in the middle of that 15-year period).
You don't love her any less if you get help. Don't be a martyr. It is not love when we are killing ourselves or our spirit...Do it as long as you can but try to recognize when you cannot go on. Respite care does help. Mom could not even get that in her rural area. I thank God every day that she is still here, as Dad was basically physically disabled with behavioural and frontal lobe issues and basically hell on wheels.
Sad and hard but the caregivers are the ones killing themselves in the name of love once it reaches a certain point.
Terri xo
I am a newcomer to your blog, but I just wanted to thank you for your post today. It really ministered to me.
ReplyDeleteIt is important to have needed respites and also to have compassion on yourself. I lose sight of that a lot.
Thank you again, so much! God bless you.
I think you are making a wise choice! Caretaking becomes a 24/7 job so respite care is a neccessity to allow the care taker to take care of themselves.
ReplyDeleteI will have to examine all the links, Vee. I'm sure I'll find some helpful information that I also need right now.
I don't mind "comments off" at all. It's your blog, your choice!
:-)
I think of you so often and wonder how you do it. It is such a hard situation you are facing on your journey, but I feel it is so important for you to get as much help as you can. It is too big of a job for one person.
ReplyDeleteWhen I became my mom's Power of Attorney, I scarcely knew what the title meant. I suddenly became the one that had to make all of the decisions and I knew nothing about late stage Alzheimer's, strokes, Medicare, nursing homes, etc. Though my siblings offered to help, there was not a lot they could do from a distance especially when I was the one that had to sign papers and so forth. It was often a very scary and lonely place. People would tell me not to feel guilty about some of the choices I had to make, but that was so much easier said than done.
I recently saw Gail Sheehy on tv discussing her new book "Passages In Caregiving". It sounded like it could be very helpful to anybody who is in the caregiver position.
As far as the links you share, I do visit Moving Forward with Alzheimer's and agree with you that it is a wonderful blog and Dolores is such a sweet lady.
I don't mind one single bit if you turn your comments off.
Sorry to ramble on so long. My prayers will be with you.
Vee,
ReplyDeleteSo sorry you had to reach the end of your rope before you shouted out for help. Praying you will find the right answer for you and your grandmother.
I can't remember if I told you about an excellent book on the subject at hand, The 36 Hour Day. I found it to be most helpful when we were walking through Alzheimer's and dementia with my mother-in-law.
Nothing about your decision is selfish. We eventually had to choose a nursing home when I was unable to meet my MIL's needs both physically and medically. A little time away from home for Nana will be good for you both.
You are not alone, there is only one footprint in the sand, He is carrying you through this difficult time AND we are here for you, listening and praying. Praying you will find a peaceful solution best for all concerned.
I wanted to tell you what a lovely mosaic you made yesterday, but it didn't bother me that I could not leave a comment.
ReplyDeleteThe decisions you are making are hard ones. Praying you will find rest and peace as God leads you.
Kindly, ldh
Vee,
ReplyDeleteThis is not selfish at all. I told you that someone close to me in my family has Alzheimers Disease and it is impossible to dance with jello all the time. Thats what AD is like, it's like trying to dance with jello. Some days nothing makes sense except trying to reason with someone who can't always make sense of things. I think that it the constant movement that gets to me sometimes.
Once I had a very stressful job in NYC. I was completely burned out when I resigned. I will never forget what he said to me. "Karen, we pay you allot of money because we expect that you know how to take care of yourself and how not to burn out."
Loving yourself the way God loves you means that it is good to take care of yourself. Remember the stories in the Bible how Jesus always went away for a while to renew His spirit.
By the way I did bake a cake, a gorgeous coconut layer cake. I planned to photograph it on that lovely white cake stand. Well, one by one my family arrived home (my husband ate the first piece) and well I felt guilty so I had them eat the cake. Thus an empty cake stand.
I hope that you get all the support that you need. I bought a wonderful book at Borders one day. It is the Chicken Soup for caregivers of Alzheimer's patients. All lovely short stories, some made me cry and some gave me a real good laugh.
Wishing you a wonderful evening dear Vee.
Karen
Sensing your heart for your grandmother's needs and balancing that with your own is a delicate and yet weighty decision. The Lord is guiding you through with helps that I believe are wonderful aids meant for our use! Praise Him for opening these doors for your gran.
ReplyDeleteNo, it doesn't both me at all to have comments blocked for a day now and then. It is a selfless thing for you to do and shows to me that you are not dependant on these comments to keep you going. It is a rest, a breath of fresh air. The reader can feast and pray and go away refreshed without saying a word. We need more often to listen. And we know that there'll be plenty of opportunity for input round the corner.
Thanks for your encouraging visit today!
I think the daycare solution is a very good idea for your situation. They are not all monsters there, there are some very caring loving people there who will take good care of Nan and give you much needed respite.
ReplyDeleteAs for comments? It is YOUR blog, and you should do as you like. I don't mind them being off, sometimes it is very appropriate.
Wednesday...
ReplyDeleteLook Vee, I'm playing in Yellows. :-)
Gentle hugs....
Wednesday,...
ReplyDeleteVee, I'm praying for you and Nan. Hospice care is wonderful - it doesn't always mean "end of life", but ultimate care when one is fading. I know it's hard. I've been there, too. You and Nan are in my thoughts and my heart.
Vickie
Noon time on Wed....
ReplyDeletePlease, please, please Dear, do not take on any .... bad feelings, from the term 'Failure to thrive.' Please. It is only a term. And you know that all beaurocracy has to have specific terms for everything.
And as you noted, she IS 100. Are our bodies really built to THRIVE, at such an advanced age? Really, Dear? I don't think so...
And I'm not sure what Hospice Care will consist of, but... You will tell us, when you know.
Meanwhile, like everyone else who reads your blog, I will hold you in my heart. With best wishes for all the strength you can manage. YOU! Yes, YOU. You know that you are the only one I really care about, in all of this.<--Yes, I know, that sounds bad.
But I'm on your side, Babe! I've got your back, from a distance. -sigh- As if 'from a distance' is of any help but...
Gentle hugs...
12:10pm Wed.
ReplyDeleteAnd not to forget your header. It's very lovely. Very. And you can easily leave it up, till through July 4th if you choose. :-)
But I hope that before that, you'll get the chance to seek out something Yellow, to photograph. For another Header mosaic. And then play in the Yellow Background Colors, we can now find in Blogger.
After being told how, I now can access them. If you missed how, I'll be glad to point you to them. Naturally, one of my wonderful readers came to my rescue and told me howwwwwwwwwwwwwwwwww.
Gentle hugs...
I just read today's blog. You are doing it your way and you are doing it perfectly. You see....God knows you and he knows who you care for and he put you together because you could do just what she needs. She loves you. Whatever you decide will be good. Just pray and you will know your answer. It may not be the answer you want or feel comfortable with but it will be the answer.
ReplyDeleteSometimes, yes, because I'd really wanted to leave a comment..and I always choose for myself if I want to leave a comment, not about obligation..Like the other day with your mosaic - it was sooo pretty - I wanted you to know..
ReplyDeleteNow, about the selfish part - no, you're not..you're SOOOO not. You must take care of you to be strong enough to take care of her. If this were a friend of yours in your situation, wouldn't you counsel them to take care? And would you truly believe that?So, why o =d they get better treatment from you than YOU do from you? Silly you..now go take caer of you, OK?
Love ya,
me
Comments on....comments off. Doesn't matter to me because I know where to find you!!! HA.
ReplyDeleteYou know very well I'm in solidarity with you on all that is going on in your life right now. Many years ago I made the big mistake of giving everything of myself, actually more than I had to give. This is a dangerous path because in the end you are no good to anybody, including yourself.
I'm typing this on Wednesday and I see that the social worker has called in the Cavalry, and that is actually a good thing. Professional help is what doctor ordered in this case. There is nothing you could have done that would have caused a failure to thrive situation. You've done the right thing by reassuring Nan that she is safe. She's feeling that things are out of her control and that indeed is scary. Take care my friend.
Vee,
ReplyDeleteYour friends are right. They are helping save you. I don't know you. I have seen many care givers go down before those who need the care do. My mother for example is laying in a nursing home bed after a massive stroke 10 years ago. At first mom was at home but not now. Mom has 2 sisters that are younger that may pass before her. It is hard that she cannot talk or walk, or use the bathroom. It grieves them and as they just watch they get sick. Think of what it does to you the one doing so much care giving. Only when you let her stay some place else will you really know what you've been through. She will be safe. They can give her medication to help her be calm.
I am a couple of posts behind in this, but have caught up. I can't even begin to imagine what you have been dealing with on a second by second basis. I would probably be standing right where you are and dealing with it exactly as you have been.
ReplyDeleteSending you HUGE hugs your way and sending extras for your grandmother.
xo,
Penny
Vee, after reading your last two posts...my heart is feeling your pain and exhaustion in all of this.
ReplyDeleteI have not walked in your shoes, any advise I would have to share would be from a lack of experience in this kind of situation.
All I can say is that your reward is waiting for you. Don't know when and don't know how, but God does. God see's your sacrifice, your obedience, and your servanthood.
Seeking out help is wisdom, a good decision, it's good for you, John and Nan. You are doing the right thing.
I support you and stand with you in prayer for every door to be open and for every obstacle to stand aside. Let there be peace in your home and let the "joy" of the Lord be your strength as you walk out this season in your life.
Dear Vee, I think you are to hard on yourself. Being a care giver, and especially to anyone with any type of confusion can be absolutely and totally draining. Sometimes you just have to say enough.God certainly would understand this. I hope you find the answers your looking for. In the mean time I always keep you and your family in my thoughts and prayers.
ReplyDelete