We care for my husband's mom - she has been here nearly 7 years and the last 3 have been very difficult. I retired early to care for her. She has two other children who rarely call or visit. We have asked them repeatedly to take mom for a bit and give us a break. One of them has promised 3 times and backed out twice and came to stay once - only to leave 24 hours after we went on vacation - leaving mom alone. That was the end of that respite break. The other child did take her for one week recently - it happened to be 'between health crises' - so all went smoothly and he thinks caring for mom is 'no problem.' She has since suffered a TIA with some lingering effect. She is 87, has had three knee surgeries, has diabetes, high BP, enlarged heart, and beginning dementia. I need a break - long enough to truly relax. We cannot afford paid help. Has anyone else found a way to convince other siblings to offer a respite/break? I have a feeling that this kind of family cooperation is not the norm - that it seems to usually be just one kid (in my case, one daughter in law) who does it all. Any practical suggestions for THE CONVERSATION?
My mother in law doesn't appreciate that she is alive. She has no interest in anything or anyone except herself. Her conversations revolve around herself. Every conversation is the same. She wonders why no one calls or stops by - but forgets that she DOES have calls and visitors - but, IF SHE DOESN'T REMEMBER them, then it didn't happen. :0)
I am TIRED of the negativity. I am tired of being blamed for things I didn't say or do (if she THINKS I said it or did it - then I did :0(
I AM JUST PLAIN TIRED. I have initiated the research process that we hope will ultimately end up with her receiving VA Aid and Attendance benefits and IF (and you don't have any idea how much I hope this works) she qualifies, SHE WILL BE MOVING INTO AN ASSISTED LIVING FACILITY as soon as the first check arrives.
I will then become 'an attentive visitor' - I like that term. She can then blame the facility for everything - instead of me. Of course, it will be MY fault she is there - but there is guilt no matter what I do. At least I would not have this constant agitation 24/7.
I know this is 'off topic' - but, ultimately, this decision comes about BECAUSE of the lack of support from her other sons or any government agency. Her youngest son has not answered our call and texts sent on Feb. 8th!!! Well, actually he has. By his non response, we know his answer is NO - AGAIN! How convenient of him just to ignore us. WHAT A JERK!
I have a question: Do the siblings who do NOT help with care giving experience guilt or is it just the caregiver? Because I feel that I am damned if I do and damned if I don't and I have decided that since it is six of one and half dozen of the other - and I get all this crap for trying - that it can't be any worse if she lives elsewhere and end up with THAT being my fault too. Even though my husband is her POA and he AND his brothers will hopefully make the final decision. I am SURE they would happily put her in Assisted Living rather than help with her care!!
I just think it is sooooo sad that sooooo many caregivers are left to do it all alone and burn out, while , for the rest of the family - life goes on with no thought or very little thought to mom. After all, she is being cared for - it's not MY problem, right?
Sorry for the rant - and yes, TOMORROW I will probably be fine. I ride a roller coaster just like every other care giver. And it isn't even a free ride!!!
One thing a coworker did when they weren't getting anywhere with family agreeing to visit and provide respite was to write an email, detailing all the chores, , etc, as another poster suggested. Then they suggested that each come up for a 3-day weekend while they were also there and get "trained." Final step was informing them that they were taking a family vacation on such and such a date for 10 days and that was that. One brother did come up with his wife and got over some of his fears about caring for his Mom. Sadly, she died before the vacation, but laying down some steps for family to get used to worked for them. But, it doesn't work for all. In my family, one sister is great about tasks -- clean the closet, call the assisted living facility...but once she goes home she only calls sporadically, and is very curt and unfriendly to my Mom. She says "Mom drives her nuts and I am sick of hearing the same stories over and over..." Seriously? Try hearing them every day at least three times a day. Grow up. Everyone deals with this differently. My therapist suggested that the children who have done the least amount of "work" letting go of childhood/parental issues are the ones that have the hardest time and also who suffer the most after the parent dies. I don't buy that -- I think most who don't help traipse along selfishly and oblivoiusly as they did before.
My vote, if you can't handle it alone anymore, find the best facility your parent and/or you can afford and focus on being an attentive visitor. Parts of this process are gratifying but I think that part is overrated!! Mostly it is exhausting, draining and a never-ending series of errands, phone calls, shopping, cooking, cleaning, dealing with their emotional ups and downs and yours, too.
I don't think this was such a huge issue 25-30 years ago - the triumph of modern medicine has left us, and will leave us with thousands and thousands of elderly people (me, some day) who a couple of generations ago would have just died. Instead, thanks to mountains of drugs and procedures, they are kept alive, but in a diminished state and they do not have the financial means to get adequate long-term care.
It's your parent for goodness sake. But, true love doesn't seem to be as a prevalent as one would like. It's easy to love someone during good times, but true love sticks by someone when times aren't so happy-go-lucky.
Eventually, though, my mom will have to go to a home because physically we won't be able to do it. The home will then put my mother out of her misery because that will kill her. They don't care for people the way they need to be cared for and there is so much disease, germs and bacteria, it will make a person with a weakened immune system in need of hospitilization. We know, because this is where our mom started out and they almost killed her twice -- she ended up in the hospital each time and barely made it. She begged us to take her out of the home. I couldn't blame her. Some staff is nice, but just like every other profession out there--there are those that don't care, are lazy, or just plain mean. Some are great, but if you only get the great nurses 50% of the time, how is that going to make you feel most of the time?
No easy answers.
You said it right there!
I went on vacation last year and all the people I had lined up to help take care of Mom "poofed" on me! (and her!)
Let's face it, the only real way out of this is death. (theirs or our own - I hate to put it that way, but its the truth!)
Good luck!
xo - Selfish Sibs
He has always told us 'what we want to hear' and then left us high and dry. How he sleeps I will never know. He has probably spent a total of 7 (24 hour) days with his parents in the last 30 years (if you add up all of his visits). I asked them why they spent so little time with his parents (they often spend a week or more at a time with HER parents) and his wife said 'we are COMFORTABLE with the amount of time we spent with his parents.' He says 'I understand' and I will 'do what I can' to help - of course, so far, he just 'can't' seem to do anything at all.
Sadly, I think we are on our own with this. Kinda sorta knew that when I posted the question. Thank you all for your comments though. I think respite is an 'unattainable dream' for most of us.
Then we met her at the airport and it was a repeat performance coming home except this time we were dealing with diarrhea at the airport :0( I felt instantly as though I had not even had a break. She had a WONDERFUL time and I am glad. I am sure the break was good for her too. My brother in law said mom was 'no problem at all.' My sister in law said 'she is so sweet.' They honestly don't do what I do and they don't see or hear what I see or hear.
Since her return, she has had a bad cold, sinus infection, two trips to the doctor, I have made 5 trips to the pharmacy, she then developed another infection 'down there' due to the antibiotics she took for sinus infection and two days ago she told us she thinks she had a mini stroke. Another call to the doctor and another additional medication. Hubby's brothers never have to deal with anything like this. Just this morning she told me she doesn't understand why I feel stressed out. NO ONE understands except the folks on this forum who deal with the same thing. I thank everyone for their help on this forum.
I plan to start a notebook/diary and list everything I do for mom on a daily basis. (hubby's suggestion). Then he will call them and just start reading my diary to them. It may help. I seriously doubt it - but it may help me. :0)
We have had 'this talk' before and it doesn't get us very far. You can lead a horse to water, but you can't make him drink.
You have done so much already. I know you want to continue the care. But this responsibility, with no respite and no vacations, could damage your own health. Then, who takes care of Mom - or you?
Try sending an email to all of the siblings, not blaming but laying out the facts. You may want to get the doctor in on this, was well. Write out a list of her needs and the care she gets daily. Let them know that you can't keep it up, so the choice must be made to find other care for her if they can't give you regular breaks. Try to make the tone nice, but firm. Good luck. You aren't alone. That's the best I can give you. You'll likely hear from others on the forum.
Carol