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.
Then she hounded me about doing a hobby. Tried to tell her I'm too worn out to concentrate, whereupon she interrupts and yammers on and on. She turns everything to her when I try to explain what's going on me and my fatigue, whatever, and she'll interrupt me and turn it toward herself. Example: I tried to vent one day how this neighborhood is so noisy I'm on constantly on edge. She interrupted me: "I like this neighborhood!" Needless to say, I quit talking.
Anyway, this morning I tried again to tell her about my perspective and she interrupted me again, "I just go into the basement and make my wind chimes." I lost my temper and yelled, "We're not talking about you, we're talking about me!"
Silence. She said, "I'm hanging up now." Me: "See you tomorrow."
After a shower I sent her a text apologizing for yelling and that I was just too worn out. Haven't heard from her.
I'm so sick and tired at having no one listen to me. They've told me to get some counseling but none of them ensure I have assured time off to go do anything. They're so wrapped up in their own little world, interrupt me, turn all conversation to themselves, while I'm suffering having left my home empty in another state, taking care of our mother, her house, and her paperwork--and doing a great job if I say so myself...which apparently I have to since no one else will say it.
The thing is Mom is my siblings' predominant focus and ask constantly about her (as they should). I keep them informed of everything (as I should).
Sometimes I think my family asked things but didn't want to know. They ask because they're supposed to or something, but when I would try to tell more details (that they ASKED for), they clearly were tuned out, were ready to move on to other topics.
I'm sure your sibs do care about your mom's well being, Mountain. But... I do think they ask out of formality more than anything sometimes. At least my sibs were like that.
As for my sibs, when my mom was alive, I updated all my sibs with one email and copied all of them on it. That was sufficient for everyone. If mom ended up going to the hospital, I would send a text message to 2 sibs in the states and they know that it's up to them to alert the others in the states.... My siblings from the states would call me and let me vent about mom/dad. Now that both parents are gone, they've stopped calling. I miss getting those phone calls....
Those caregivers didn't reach the stage I was in. Only one lady, with her husband as the one needing caregiving, was in the same stage as me. I was shocked that she was blacking out. She would lose hours and completely 100% not remember it. Even when someone told her what happened on those missing hours - she. could. not. remember. it. As she was telling the visiting speaker of our group about this, I gasped and said softly, "You too!!" She turned around and looked at me. Looking at me, she continued describing her 'forgotten' situation, I was nodding emphatically. I said that I wrote a note down but have Absolutely. No. Recall. of that phone call! It was in the afternoon but my note was dated on that day - that morning. I told her that it's happened several times, too - where I lost 15minutes.... The speaker asked if anyone else had experienced this. No one. The speaker looked worried. I think she emphasized strongly that we seek medical help.
In all my years of caregiving, this is the best place to find people who KNOWS what we are going through. Who can give you advice and even short cuts. I believe twice, I was contacted in my message wall on how to change a bedridden person's pamper. They wanted step-by-step instructions. I had no problem providing it because I watched the caregivers do it with my mom, plus I also googled for hours on tips of doing it..... So if someone here has info that you would like more info on, don't hesitate to contact them on their message wall/board.
I went in today to make a payment plan for the coffin/services. I chose the cheapest coffin {Who cares if people complain how plain the coffin is - I'll be dead anyway.} So, coffin + prof services (hospital, my dead body & day of funeral) + family coach + interest rate for 7 year plan = $5831.00! There was a 10-yr plan but just the thought of owing someone 10 years is mindboggling. Especially since I won't know if I will still have a job for that long.
We get home and they can't assemble the nebulizer, so, I'm trying to do that with mask on face, wearing gloves,......You know, you really do need a backup plan in case you ALL get sick. I don't provide hands on daily care for them, but, even what I do handle, it was a bear and not feasible. But, how do you call people to come help out to house with sick and contagious people in it? I hate to do that to family and friends who have their own health issues.
What a lesson learned. Oh, I have another horror story of the ER visit on Saturday night, but, I'm too drained to do it now. I need my rest. lol
My biggest issue was trying to keep my parents from getting it. Wearing mask, staying in one room away from them, washing hands WELL before touching anything, then disinfecting everything I touched afterwards. They just don't seem to get it.
I did read that taking Tamiflu helps reduce how contagious the flu is too. Is that true?
I am just a few Steps ahead of you in your journey. My Mom too had a bad time after my Dad died. Lots of calls and wanted no help. Finally she has antidepressants now. My Mom also has dementia. I give her pills 2 x a day myself. She adjusted to sleeping alone abd not being so scared but it took quite awhile. I think we as kids have more actual panic then our parent! I had to learn to just take the phone calls, reassure her as much as possible, and let her learn to be on her own like the Doctor said. She is not willing or really needing to move from her house yet. But she did take a long time learning to be okay by herself. Someone else will have great ideas here. I'm just sharing my story with you. And boy....what a common story this all is!
Do you have POA both financial and health? if not try and get her to give you that. Try and get her to a lawyer perhaps on the pretext of updating her Will and have the lawyer sugest the POA. it is possible she will agree as he is an authority figure. You can also discuss while with the lawyer if she wants to be a DNR ( Do not resuscitate) and just what she wants to happen if she suddenly has a heart attack or stroke. She needs to tell you if she would want to be kept alive with a breathing machine and be tube fed if there was not hope of recovery. these things need to be taken care of anyway if not already done.
None of this is going to be easy as you are dealing with an irrational woman who is loosing touch with reality and can only get worse
As far as the pills are concerned try setting up a pill box ad then remove all the bottles till you .have to fill the box next time. You can either do it for a whole week or if you are there every just one day at a time.
Talk to her Dr and ask him to arrange for cognitive testing. Unless you have POA he can't discuss anything with you but he can certainly listen to what you tell him. take it slowly one step at a time and realize she actually can no longer control this kind of behavior.
I just went through this with both parents, got them into care last month after years of begging, arguing etc. You will never convince your mother she needs 24/7 care. You just have to do it at the first opportunity that arises. I was about ready to turn my folks over to the county until the perfect storm of calamity hit and allowed me to take action.
BTW, our cost for both parents in a nice AL with almost all assist/menu items is about $100 K per year. I know this can vary widely but look around.
And c mag is correct, if she doesn’t have funds you’d best be applying for Medicaid.
Add spouse for another $1250 per month.
Now add laundry service, med administration including insulin injections, and very high level of assist for wrangling Dad with moderate dementia (wants to exit building 10 times a day to find his car) and total mobility assist for mom who can barely stand up for 5 seconds without falling.
And we use in house doc service, adult diapers /wipes service (it’s about as cheap as I can buy them). We’re at $7000 per month. And this will go up dramatically when Dad is moved into the memory care unit which could be in one year or one month from now.
Keep in mind this is for two people and I’m 600 miles away and totally rely on these folks for everything.
The when Dad had to move into Memory Care, same complex, the cost was around $7k per month with everything included.
When my Mom needed to live in long-term-care, it was $12k per month as she needed a higher level of care.
It can become expensive as one ages. My folks were in their 90's.
I had to jump out of my bed and turn on the light. From past experience, if I go back to sleep, my nightmare will continue where I left off. I walked a while to pass the time. In the meantime, I knew that I only get nightmares from reading scary books or movies. My tv isn't working. So, something I read triggered a nightmare. I'm reading a fantasy book short stories by Tanya Huff. Her books are Not Scary! Unlike VC Andrews, Stephen King, etc.... And then I remembered one short story. The Underhill queen elf made several comments about wanting to eat that rude male human. Instead, she kicked him out of Underhill. Yikes! Just from her thinking about eating him caused me to have a nightmare?! Sigh....
WATCH out in the grocery store. Today, I was shopping and a young lady was there with her grandfather, I suppose. He was operating a scooter by himself, but, she walked beside him. I heard a noise and looked up, jumped out of the way and barely missed getting hit by this man. OMG. People really need to be careful. He could seriously hurt someone if he hits them on that electronic scooter. I really can't afford to be out of commission with a broken leg.