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.
Hope everyone is having a great day......sending thoughts your way!
Cmagnum, good for you for letting him know for you deserve that tax credit n some.
Bek, Welcome aboard. This site here has a lot of information as well like Cmagnum mention check it out.
I was getting a bit overwhlemed with info, that I made me a binder n put divider for things like, Alzheimer's, Home Care tips, financial programs, and Caregiver's Support etc. You should be able to find your own local Alzheimer's organization to pick or download information. You may be able to just go to this site n look around n put in your state for Alzheimer's (AD) information. alz.org
There is a book that someone had mention n it is like another bible in our house for it really explains a lot of stuff. The 36 Hour-Day by, Peter Rabins. You may be able to get it free from your local Alzheimer's association. Try to remember that it is the disease n not your mom, sometimes. : ) Learn what works for both of you helps a lot too n try not let the little things bother you. Last but not least, the people here r great for support for I have no idea what or where I would be by now n my journey has just begun too. hang on for the ride n go with the flow.
Everyone, I had baked a sweet potato in my microwave n I heard bang! sweet potato everywhere n the smell was just gautley aweful!!! I have tried cleaning it out with vingar n water and Mr. 409 and it still stinks!! Does anyone have any suggestion please n this is day 3 n still stinking....
I am going to try n go to that caregiver conference tomorrow while hubby watches his mom. Supposely, Peter Rabins is going to be their to speak. It seems like it will be a all day thing from 9-4pm. I better take me a pen n paper to take notes. I hope it will be worth it going to this conference.
Ladee, We got tons of rain today that I thought I heard my dried-up-crackling grass was singing for joy.
Everyone have a nice night.
Just a drive by to let ya'll know that sis talked to the lady at the hospital that does the scheduling for the thoracentesis and she told sis that they had the ct scan report and that it looked like dad was going to have to come in tomorrow at 12 to have the thoracentesis done. So i guess they were kinda waiting to get the results of that back before scheduling the procedure. So maybe in a few days we will hear something.
On a happier note- My baby is graduating from daycare tomorrow night. The daycare is having a ceremony for the kids at 7:00. I'm probably going to be balling my eyes out. I can't believe my baby is going to be starting school in aug. Where does the time go? Plus i love his daycare and all the teachers and parents there, everyone is so nice. And they have been so good to connor and with helping him learn so many things these last two years. I don't know who is going to miss them more ME or CONNOR. lol. Love and hugs stormyyy
Also, you say the doctor wants to recommend Hospice care. Is this in home care that he is thinking of or in a facility. I doubt your mom would do well with in home care as it is not 24/7 at home.
This may be the time when you need to tell the Social Worker that you need and expect more help for her. Same with the doctor. They should be helping you and your Grandmother, not leaving you to fend for yourselves. Kick some butt.
You are an amazing Granddaughter. Stay in touch with us. Sending you lots of love and best wishes. Cattails.
I will be kicking some butt when I go up to the hospital later on today...thanks :)
I just started reading these posts and thought, Wow, other people feel the same as me and have the same frustrations. Maybe it isn't just my inability to cope with the situation!
Thank you all for listening and big hugs to all of you. What we do it hard!!!
My mil dies a month ago today. The only daughter went with one brother to order flowers for the funeral. When the total bill came to $475.00, they didn't have the money, so they charged it to my hubby. OK. I paid the bill when it came the next week to my home, and I paid it from our "operating" account. Our part was $70. I figured out what everyone owed and sent an itemized list to all sibs 3 weeks ago. I have only been paid by one. I am still out-of-pocket over $200. Is it wrong of me to want payment from them before I see them in July? I could get paid from my hubby out of mil's acct, but I don't feel right about mil paying for her own flowers at her funeral. Any thoughts would be appreciated...........
Hope all goes well. Take care.
Welcome to all the new posters...have a broken son I need to go tend to, will try to get back on later.... hugs across the miles... oh and Stormy, post pics on FB of Conner's graduation.....
Stormy - oh, you proud Mama! Congrads to Connor. At the high school grad party I was at this weekend, they had a picture frame with side by side pics of the grad girl at her first graduation (kindergarten) and then high school. It was really neat. Something to think about...
seeme-I'd mail them dead flower petals with the bill. Hugs.
Ladee-How is your son doing? Any more word on his leg? Hugs.
Hello to the new posters. Welcome! This is a great group full of people who are also on your path. We help each other because we have all walked in the same shoes. Blessings and hugs to you.
It was interesting to hear Mom talk to her new primary doctor. She was "asked" to live with my sister, but "had" to come here to live with me. That explains a few things. Mom tried hard to piss the doctor off...didn't acknowledge her right away, wouldn't fill out all the forms, ect. But the doctor handled her like a pro. Now Mom likes her. Doc must have seen me rolling my eyes a few times. Whoops. And Mom bought me a donut I don't even like much for when I got home from the gym last night. Such good bakery, she said, as she opened the bag in front of me to smell it. See why I go to the gym??? Best of all, she told me she ate the first onion from the garden. That would be because she did so much hard work to make the garden, right???
Okay, enough venting. What was really hard was seeing both their diagnosis written in black and white on the FMLA forms the doctors filled out for me. Especially the kidney disease for my Dad. Since those are the patients I work with during the day.
I want a caregiver t-shirt, too! We could make a fortune! :) LOL
Goodnight, and better tomorrows.
Well i wanted to let ya'll know that dad did have more fluid on his lungs, they removed a liter and said that they could've removed more but they didn't. And it has only been 2 weeks since they took off 2 liters of fluid then. Sis said that the dr let her look at the fluid and she said that it was dark yellow, like urine. The dr told sis that he would call her in a day or two and give her the results. Also he is going to get dad a newer appt for next week . So maybe we will hear something in a day or so. Well i have got to hit the hay, getting sleepy, but i will talk with ya'll tomorrow. Love and hugs stormyyyy
You have the benefit of having Connor in your life. He is life; young and new in all it's glory and achievements. You have the great benefit of seeing life in the form of your precious son and, on the other side of the scale, you have your dad and, most of all your sis who has put so many eggs in the basket of keeping your dad alive.
You have a contrast that your sis doesn't have. You have a grounding force in Connor; a way to see a new tomorrow.
I am grateful that you have been given this special gift that Connor is and the years you have ahead of you to focus on his growing into a young man.
When your dad passes, I hope there will be some way to bring your sis into the world of the living; the one you live in. I hope you can be there for her grief, like she has been there for your dad. I don't know if it is possible to reach her, but in a normal life, I hope she would have been happy to share this special graduation time with you. Maybe not now, but hopefully in the future.
Much love to you, Stormy. I am so happy for your wonderful day with Connor. Hugs, Cattails
Stormy so happy for Conner..and a praying for you sis and dad.
Seeme..have a similar story like bookworm..but when billys parents died..there are 9 all together. The 2 youngest couldn't count they didn't work.. So we divided everything up but of course we never got balances owed from some. Like the dead petals with the invoice. And also the reduction of monies at the end. It is just not right how some folks are..sad they were all raised the same but turned out so very different.love you seeme sue!!
Notlike know how you must be feeling with words in black and white..slap in the face even though you knew makes things final somehow.
The hospice company that started with us last week seems great. Over the weekend dad fazed out Bp high and heart rate high.. Finally came round..nurse came out and by that time vitals were good. Think he had a TIA but it was different than ones I had seen before. He is more confused but he can still feed himself which is good for him. We had a quiet night last night no talk of eggs or needing to go to school...will see what the day brings.
Love and prayers to all
Bad storm here last night,much needed rain tho... I have so much foil and crap on my windows to keep out the heat, I never have to worry about aliens... so will access the weather when I leave for work... hugs to everyone... overslept, my energizer bunny is about kaput....... hugs to everyone....more this evening...
seeme.....if it were me when it came to sending the sibs their "share" I would withhold the cost of the flowers. Otherwise you won't get it. Either way it's probably going to cause some anger. I guess you could look at it that the money is no longer your mil's.....but I know...it's the principle of the thing. It's not like they couldn't ask the cost before ordering to make sure it was affordable. When my sibs pulled their little stunt when my mom passed away at least they were wise enough not to expect anything from me!
Today is the col's birthday......88 years young! Will go spend some time with her later. She will get to wear a birthday crown today and the NH will do something special for her.
Hope everyone has a day filled with something good and not just the burden of care giving.
Taytay52, welcome to this board for we all know how we can have difficult days, hours or even minuets yet also, we have some good ones too. Just try to remember that it is the illness n not the person. Even at the Caregiver conference spoke about how it is a very hard n challenging job n that we as caregivers have to take time out for ourselves even if it is only One hr a day. For when we n just like any other caregiver thats working at NH facilities can become 'Burn-outs' n then, what good r we to the person who has no control of the disease. Remember that 'Humor" can be very healthy for you n laughter too. Try to find some humor while taking care of someone. Most of all, we have to take care of ourselves first so that we can continue to give 'good' care for our love ones.
Seemeride, how r you holding up beside the money situation for the funeral? As for the money of one absentee paying, you may want to call n see if they r going to be able to help pay for the cost when they come up in July? If you think it will start a mess, I personally would let it go for its not worth the fuss between relatives n its not worth getting sick over. I would just say, "do what you think best for you only truly know your family situation." Good Luck n sorry for your lose.
Stormy, I bet you will be taking lots of pictures of Connor graduation n too bad u can post one for all of us to see. Give him a big ole hug from all of us n tell him we our proud of him too.
Burned, Good luck on the bath time. I had forgot all about the mnl Monday bath. Can I get fired? pretty please. ; )
I wanted to share why I feel it is so important to always allow an Alz charge their dignity.... S is in a serious decline as I have shared with ya'll and the other night he had two "wetting" accidents.... when M was going on and on about it, I looked at S's face. what I saw was embarrasement, he was hanging his head..... with my voice like stone, I said to M, IF he could do it different, he would.... then took S's hand we walked into the kitchen to get him some juice..... he held on to my hand and said, " thank you, I am so embarrassed....." I gave him a huge hug and told him how much I love him, how much fun I have with him, how I look forward to seeing him... so my point is, even when we may think they are on the final journey to what this damned disease can do to the human mind and body, there is STILL the person in there... S hasn't had a really lucid moment in a couple of weeks... but he knew he was feeling shame and embarrassement..... and he needed reassurance, to know he would do it different if he could, that no matter what he is loved and appreciated....
I HATE this disease, with a passion.......
Although mom was very violent, she did have her docile side - very rare, though. We would give her a doll to calm her down. She would cradle it. I have a photo of her holding the doll and laughing, wearing a knitted cap made by older sis. Anyway, I keep that photo framed and hung in my bedroom wall. This is the mom that I want to remember - not the scary, violent one or the now unresponsive one.
I think out of my whole family, I'm the only one who have a framed photo of her.
But, back to the lucid moment that S displayed. Years after mom stopped talking, responding or looking at us, she always had this blank stare. One day at the hospital, we kids were all in her room surrounding her bed and just talking like sis/bros do. My bro had a shocked/scared look while staring at mom. We all looked at her. For the first time in Years, her eyes were Not Vague or unfocused. She had intelligence in those eyes and she was staring at my oldest brother.
See, I told you, even mom thought Dear Brother should be taking care of her. You see, he is her Favorite Son. The irony is that when I was in middle school, I had caught her looking at me with such hatred in her eyes. I'm now caring for her..while Dear Favorite Son who lives next door rarely visits - not even this past Mother's Day. I wonder if he had that look of fear because he knew he was suppose to be caring for her? Or something like that? Since then, like you said Ladee, there is Still the Person in There. So, I try to talk to her normally. Have to go now. Time to change pampers, clean tube and ...wash the few plates I didn't wash after dinner. Hugs...