This seems to be a question that is not asked enough or we think what we are feeling is not as important as what our loved one is going through. This job we have taken on is a tough one and there are days when I think my "stress rope" cannot be pulled any tighter. Then there are other times that make those bad days just a memory. Do you feel like banging your head against a wall one day? And then the next day your loved one is attentive and loving and comprehends whatever you say? There are some who keep those feelings bottled up within themselves; others take the time for outside resources and others who look at sites such as this for some understanding. I do better when I have someone else to bounce my feelings off of. Let's face it....we aren't superhuman and besides ourselves and perhaps a family to take care of we now have taken on the responsibility of another human who is incapable of taking care of themselves. Do you breeze through the care giving without a problem? If so, I would like to know how you do it, maybe you can offer some new ideas; do you have feelings of frustration and need to talk about those? Come and talk and know that you can speak freely and without judgement and without finger pointing.
I am caring for my mother-in-law and have been for about 1 1/2 years. She has moderate dementia and incontinence. Other than that she is very healthy. Sometimes that short amount of time feels like 10 years and I wonder how long I will be able to do this job. I get so very tired of hearing the same thing day in and day out, but I have to remind myself that to her, each time she sees me, she is offering new information. At times I have no problems communicating with her, but it seems like more and more she cannot retain a thought longer than 5 minutes. We have had to make signs for her so she will know what she can and cannot do. So far it's working, but for how long? Maybe I will have to end up making her a "Book of Do Nots". She is on memory drugs, which don't seem to make a difference. So why do I continue to dole them out to her? I guess I'm afraid of what might happen or how she might act without them. I might have to rent a boat or buy a helmet! Sometimes I see something in her that leads me to believe that she could get aggressive and what would be my reaction to that? At the end of each and every day, after she is tucked into bed, I breathe such a sigh of relief. The "inner beast" is quiet at last, or at least for a few hours.
Pull up a chair and visit........I would like to know how you are coping everyday..be it good or with handfuls of stress.
ASG-Can we have movie night in the laundry room? Popcorn for all! Hugs.
Vic-Let's see...you worried, you noticed the changes in Dad, you continue to take care of him, you called and made appointments with multiple doctors, and now you got an answer. I'd say you did ALOT. Please don't beat yourself up for not knowing what was wrong with him. Your parents are lucky to have you. Hugs.
Franny-welcome. Have you tried contacting a social worker? Maybe through the Department of Aging, or through one of his doctors? They might be able to give you some options for home care for him. Hugs.
It's Friday! Yeah! Well, for me that just means 48 hours of home caregiving, instead of work caregiving. But I'll get a nap!
Going to see a good friend tonight. Non-alcoholic drinks, chocolate, and venting. I can't wait. Tomorrow I am taking the parents shopping. I could wait for that. LOL
Have a good day everyone.
Good to read from so many this morning.....WELCOME to our new friends! Franny joins us and wins the COW PATTIE! That must be a good omen for things to improve in your life!
Hi again Lisa..so sorry for the added burden of now dealing with the colostomy and yes come here to unload....we have a bunch of good shoulders to lean on.
ASG.....ditto what ladee said.....Love ya!
mis......if you need some pointers for getting your dental work done just holler...you will do fine and won't really have to worry about losing them in the mud...lol. Have been following you on FB and looking at the pics of mudding....I bet there's mud in places you never thought you had!
Vic....you are such a good daughter and doing such a fantastic job of care giving...please don't beat yourself up. That just leaves internal bruises. Watching the end of life cycle has got to be one of the hardest things we will ever do because it's inevitable no matter how much hard work we put into the care giving. Hugs for you today...
And remember that we can say a prayer and God will hear us whether we are changing diapers, mopping floors or sitting in the laundry room!
Happy Friday Trails,
Jam
Lildeb, such a difficult sistuation. Yes, your sister needs you now. Prioritize.
Mslisadoll, I was looking forward to my mom having a colostomy, but she died first. My dad had a temporary one for 6 weeksd. After the first blowout, which, thank God, happened on the hospital floor, I was told that 20 minutes after eating was usually a good time to check the bag. His bag was in the small intestine, so it was all fluid. Guess the same goes for fluid intake. And we put a garbage bag under him when the bag got changed. Of course, at the time I was just learning how to deal with it and so was dad. He died just after the reversal surgery.
Wish I could help with all of your troubles and worries. I will have my mil here tomorrow. Not looking forward to it, but hopefully it will just be a temporary stay before she goes back to Maine. She sounded good the last time I talked to her.
Everyone have a wonderful day..
Prayers for all of you.
This is where LOVE, our most powerful tool comes in.... in the end, that's all we really have to give, tho it was given a million times a day in many ways with our actions, to make it more comfortable for those we love.... but then we just get to love... with a broken heart, but it is love all the same....
All of you, regardless of your situation and where you are in this ongoing story of caregiving, you are so appreciated, so loved, so thanked.... angels sent to all of you to help carry your load , what ever it might be.... hugs to you all..
My mom gets constipated like that from time to time.. I have even had to take her to the er to get cleaned out! Uck!!! I have found that magnesium citrate works great! It is a little bottle of fizzy stuff that cost 1 dollar. Within 6 hours all is flushed through! Lol I notice that is the elderly aren't regular they stress about it and that in itself make the situation worse.
Burned..glad you a feeling a little better..you amaze me woman!
And ladee you and seeme well what can I say.. Know you guys are holing me up!
Mom and I enjoyed eachothers yesterday.. Guess I listened better and she put her hearing aids in! Haha
And a good day with mom too, wow, maybe you are in caregiver heaven and just don't know it....
Stormy, glad to hear things are boring for you right now... as much as that in itself sucks, at least you know he is maintaining.... hugs to you..
ASG, glad to hear it was a good day with Auntie... you just amaze me that you are able to maintain any sanity on the merry go round with her... or maybe you aren't sane and we just don't know it.... either way, you are loved too...
Marie was Cranky Cassie all day, I just can't help but look at the two of my charges and wonder about God's plans sometimes.... here she is with a sound mind, health issues and a straight up bitch, Sonny is late stage Alz. and nothing but a sweetie...
It was almost an explosion yesterday when I missed a BUG on the floor in the entryway hall.... IT'S BEEN THERE ALL WEEK !!!!! No, it hadn't, but I let her get away with that one, ya know, picking your battles and all that happy crap.... but after a few hours of dodging verbal bullets, went to ask her something about lunch, she threw her head back, rolled her eyes and deep sighed (probably the only deep breathe she had taken all week !) and that when I wasn't playing anymore... just told her I was going to fix it how I wanted to, if she didn't like it she didn't have to eat it... see, it's this little passive-aggressive game she plays... if I don't ask her, and do it wrong, then I get blasted... if I do ask her, I get on her nerves.... she sets it up to be able to bitch no matter what... she ate the lunch....but just about burned the tires off my car getting away from there yesterday....
Seeme, today is " get the mil' day, will be thinking of you, hoping you have installed rubber bumpers all thru the house for when she is bouncing off the walls.... hopefully this will be very short term.... but know we will be hearing from you more often....love ya...
Moving stuff from one storage location to another this weekend.. I'm already tired and haven't even gotten started yet.... so I'll pop in when I can.... hope you all find a way to get a hug today... am sending some cyber hugs, but it's just not the same.... love and hugs to those I didn't say love and hugs to.... a few brain cells went by the wayside yesterday..... love ya'll
Almost every day I am reminded of one of the most important things I learned about Alzheimer's caregiving -- Just let them do it.
In my case, this refers to my mother Dotty. Dotty is deeply forgetful..
When I first moved to Delray Beach I learned that at least once each day Dotty jumped in the car and went to the store to buy lottery tickets. I say at least once a day because Dotty often forgot that she had already gone to the store and gotten the lottery tickets for that day, so she jumped in the car and bought them again.
When I would try to explain this to her it was very painful. Even when I showed her the lottery tickets it was painful. She didn't believe me and the evidence didn't help.
Welcome to the world of Alzheimer's care giving. The standard and usual rules of communication do not apply.
Not long after I arrived, I managed to get Dotty's license revoked. Not that it mattered, Dotty refused to believe her license had been revoked. She told me daily that she got her license back. Or, that she hired an attorney and he got her license back. Myth.
Now that Dotty didn't drive I had to take her to the store every day for her lottery tickets.
After a while I came up with one of my best ever caregiver ideas, or at least that is what I thought at the time. Why not buy all of the lottery tickets in a single day? All 37 dollars worth of the tickets.
So I bought all the tickets and then each day I would hand the tickets for that day to Dotty. It didn't work to perfection, but it worked and I didn't have to make the trip to the lottery store every day.
Maybe I forgot to mention, Dotty had her own very special lottery store. The reason? Because it was a lucky store. Dotty had concluded that her favorite store had better numbers. So somehow when Dotty bought her daily Cash 3 Ticket 8-1-3 at that store, it was very different then if she bought 8-1-3 at another store. Trust me, I did try to explain the error in her reasoning many many times.
Of course, this was before I discovered Alzheimer's World. Now I understand Dotty's lottery ticket logic. Really, completely understand and it makes sense -- in Alzheimer's World.
Several months after my great Alzheimer's caregiver idea -- buy all the lottery tickets on a single day and then hand them out one day at a time -- I received one of the biggest shocks of my Alzheimer's caregiver life. A shock that sent me into a tailspin like I had never experienced previously in my life -- it sent me to the edge of total despair.
Here is what happened. I took Dotty to the store with me. Once inside the store, I handed her the envelop with the lotter cards filled in and the $37. I instructed Dotty to go and get the lottery tickets. She didn't budge. She had no clue how to do it.
Next I walked her over to the lottery ticket desk and encouraged her -- get the tickets. She was clueless. She did not know what to do. Thanks to my intervention, Dotty had forgotten how to buy lottery tickets. Something she had been doing for 20 years.
I had to live with this for a couple of days.
I was in a state of emotional, physical, and psychological pain. I couldn't get this off my mind. I was convinced it would only be a matter of days or months before Dotty wouldn't be able to do anything -- or worse. I really felt like I was on the edge of despair, and ready to fall.
This happened seven years ago.
After a couple of days it was time for us to go to the doctor for a check up. Once there I started to tell our wonderful doctor, Dr. Chiriboga, about what had happened. I will never forget that day or what he said.
He sat down directly in front of me and told me, if you do everything for her soon she will forget how to do it. Once she forgets it isn't likely that she will relearn how to do something.
Next, his words of wisdom changed our lives. He told me I was the ONE -- the only one that knew what Dotty could and couldn't do.
He suggested to me that I let her do everything she could do. He told me, and these words were prescient, that I would probably get criticized if I let her do everything she could. He told me you'll get criticized from people you never met before in your life.
Dr Chiriboga saved our lives. And of course he was right, I have been criticized upside down and backwards for my simple approach -- I let Dotty do everything she can do.
When I went home from talking with Dr Chiriboga, I got out the da Vinci pad and went into the bunkhouse. I decided I would let Dotty do everything she could do. I started making lists.
Soon, after great success with Dotty, I started a new da Vinci page. In a big circle in the middle of the page I wrote --
We will start living our life as we always had.
By this time I already had Dotty in the gym and had noticed the remarkable things that she could do. This was slowly convincing me that we could start living our life the way we always had.
So we came out of our Alzheimer's cave.
We started socializing. Dotty was back to talking to people. Brand new people she had never met. She was telling her wild tales to anyone that would listen. They believed every word she said. I had learned to accept these tall tales instead of correcting her. Instead of getting bent out of shape, I learned to laugh right along with everyone else. Did it matter that none of what she said had happened, or that much of it wasn't true?
No.
I didn't know it yet but I was crossing over into Alzheimer's World -- seamlessly. In Alzheimer's World it is not unusual to learn that what is true is false, and what is false is true. Doesn't matter over there. Just doesn't matter.
So yesterday it happens. Somebody I never saw before in my life starts criticizing and berating me.
She is mad because she thinks I am not helping Dotty step off the sidewalk and into the street. I am there doing my usual thing -- cheering Dotty on and encouraging her to take the step. I am holding on to her but I am not really helping her. She won't fall and I know she will take the step -- sooner or later. In Alzheimer's World you just gotta learn to be patient.
So here is the women yelling at me, telling me to get Dotty a walker and all kinds of stuff.
I give her the stare and I put my palm out and just wait for her to run out of gas. Dotty makes the big step down and away we go.
Now to be honest, please pardon my French here, I would have enjoyed ripping that woman's butt out with my mouth. And trust me, I know how to do it without any profanity. I could have given her the stomach ache she was trying to give to me.
But you know what -- I didn't say a word. I just took it in stride. I am comfortable in my own skin as an Alzheimer's caregiver. And, like I said before, I won't let anyone crap on our parade.
On the way to the car Dotty said, that woman is an ass. I laugh. This one is true in real world and Alzheimer's World.
All in all, pretty good day.
You have to learn how to let a person who is deeply forgetful do things, everything they can do.
You need to learn how which activities then can do, and never assume they cannot do something until they prove to you conclusively that they can't.
Please. Avoid the tendency to say and think, this won't work for us. Try it first, even if you brain is telling you it won't work.
Never forget, there is more there than you can imagine. So use your imagination in a positive proactive way.
If you let it, Alz. will teach you more than you ever wanted to know... it will teach you how to decide what is important, that love is more important than a clean kitchen floor. That they still have a sense of humor, that they have fears we could begin to imagine.... it's not about us really, it's about them...
I read on here all the time how some NEVER get a break, I believe it, but at the same time, I'd put my charge in the car, go to the nearest church, take them and myself into the pastor or preacher or priest's office, and burst into tears.... I need a break, I know you have at least one remember here who will help me for a few hours.... I need a break....
I think we limit our resources or we are doing it to ourself.... needing to keep our eagle eye on every movement and hearing every breath... fine... maybe for you it needs to be that way.... I did get my few and far between breaks from Ruth and the craziness... once in awhile I got to sleep for more than two hours.... and I lived.... exhausted and heartbroken I started my next job 8 days after she died... last year was rough, I lived.... and as much as I do not understand Marie most of the time, I do love my Sonnyman, as many times as I want to walk out the door because of Marie, I would miss Sonny too bad.. Could they find another caregiver, well sure, but Sonny is my teacher right now, and Marie is the classroom bully, such is life.... I'm not missing out on anything with Sonny until the family makes other choices,,, and then I'll go visit him in the NH... I am not kin to any of these people.... don't think in the long run that has a damned thing to do with anything... do I get impatient, yes, with Marie, not Sonny. Sonny lives in a simple world, most days I prefer his to mine.....
Didn't stop me from loving her, had she been in her right mind, that would have NEVER happened.... I still hobbled to the NH and gave her kisses, she was so lost and confused in that place... but I couldn't take care of her, hell, I was using HER wheelchair at home.....so we do the best we can, day to day..Some days are good, some are not, I think it's called LIFE.
Mom has radiation again every day this week. So far, no symptoms. At least none that she's mentioned.
Dad's leg continues to improve. But his blood pressure is still a bit high and we don't see that doctor again until June. I think he is stressing too much about it. He wants to check his pressure every day, and it doesn't change all that much. He may need more meds to keep it in check. We'll see what happens.
Only one blow up with Mom this weekend. That's pretty good. She spent $60 on the girls, then told Dad $10 was too much to spend at one time on his bulk box of oatmeal. While we were standing in line to pay for it! I told her she was penny wise and pound foolish. And I'm right. Not that my opinion mattered.
Hope everyone has a good day!
Lildeb... yeah, so what if she is taking the clothes out and putting them back... gives her something to do... and the more she feels useful, the better things will be....and yeah, those dishes will still be there... but at least you got to put your feet up for a little while...
Notlike.... no wonder dad is concerned about his BP, bless his heart, makes me want to get 20 boxes of oatmeal and send him, with a great big bow on it and a card that says, "you are amazing"...... I'm telling you, Marie and your mom are sisters, such a scairy thought... and she will piss and moan all week long, but never tell me how she is feeling after her transfusion.... all I can do is send you lots of hugs and tell you how amazing you are for putting up with all this crap, just know that thur the day, I am going thru the same things..... then we get on here and love each other thru to the next time......
Hope ya'll have a decent day.... I am tired from moving yesterday, so know I am not going to be playing any "marie" games today.... just keeping my mouth shut, and thinking of all of you doing the same thing..... love to you all....
notlike I will send another 20 boxes to Dad....and yes, bless his heart. Your attitude daily is an inspiration.....you definitely have an angel that sits on your shoulder.....hugs!
lildeb....yep dishes can wait because we all know the darn cleaning fairies around this bunch are always on vacation! You will have the memory of some good interaction with your mil....something that can never be taken away.
I think the most important thing I learned while care giving the col was patience. That's not to say I was that way all the time.....but I learned to be more tolerant of things that otherwise would have driven me over the edge.
There have been no changes in the col....she goes about her day sitting in the wheelchair....is still confused about some things, the other night she said she got to play with her dog and that Target was outside her window knocking on it to come in.....and I have to keep reminding Target that he can't treat her mind like a doctor would.........he must start learning to go into her world or his frustration level is going to continue to raise.
Another beautiful day here then a couple of days of rain and cooler temps....then nice again. The break will allow me to get a few things done in the house.
Sending angels and hugs to all!!
Hubby's skin was just bubbling a his blood pressure rose yesterday during a discussion with her. She still won't turn her hearing aid up loud enough to hear us, and hubby has a moustache, so she can't read his lips. He wanted to know if she had drunk her boost and she kept asking about what moose...........and off he went......ping, ping, boing, boing.......
Hope everyone has a wonderful day........