Making another person understand what it's like caring for a loved one. Any words of wisdom?
So my mom and I take turns caring for my grandma. It's a hard job 24/7. My sister is always so flippant about it comparing it to caring for her 14 month old and 3 year old stating that she understands sleepless nights as sometimes Emmett cries for a few hours a night and it's just like grandma. Now I try to make her understand it's not that easy. Grandma might not 'cry' all night long but she certainly doesn't sleep either and unlike a child, she isn't distractable (although I do try) and she isn't going to get better. Our nights are not just part nights. When it's a bad night we get no sleep because unlike a baby who sleeps and you don't have to worry about them getting out of bed, even when grandma is sleeping we are watching and waiting making sure she doesn't wake up and try to get out of the chair. We know it's just a matter of time before she wakes up having to go to the bathroom and will get up without her walker and try to go and we don't want her falling again. It's this constant fear we are living in and it's never ending. This isn't a phase in life that she will grow out of in a few weeks or months. This will only get worse but my sister seems to think it will just get better.
She frustrates me by just assuming that life is just like it was years ago. A lot has changed and she was just here watching it go on and still she discusses us coming to Maine for a visit (10 hours with grandma in the car? I think not for 10000s of reasons), she talks about how she doesn't understand why we can't just take her out where we want to go when we wish to go shopping, and she just seems to think this is just like a child where you pick them up and go where you need to go. It's tough and frustrating.
Has anyone been able to successfully explain caregiving to a family member who just doesn't seem to get it? It's not like caring for a child as a child gets better, and smarter and learns and remembers. My grandma has dementia and I'm blessed when she calls me by name and remembers to bring her walker with her somewhere and goes in the right direction without being reminded. I'll feel even more blessed if she ever remembers to ask for help when getting up rather than having me make a mad dash across the room or causing me to throw whatever is on my lap aside just to be there when she stands up since she always forgets to ask and probably always will.
I know I shouldn't let it bother me but my sister and I have always been so close and I want her to at least recognize what we are doing and why instead of just act like it's not a big deal and doesn't deserve understanding. I'm even giving up my trips to Maine to see the kids since I don't want to leave my mom without her second shift person because I have heard so many horror stories on here about how caring for someone by yourself 24/7 will kill you or at least make you really sick. She's already a person with remission from cancer only 2 months ago so I don't want her even more sick.
Any words of wisdom on how to help family members understand?
Some people actually are incapable of comprehending anything they have not personally experienced directly. There is such a thing as an inability to project yourself into someone else's shoes and be empathetic or even sympathetic.
I had a very difficult labor/delivery and a very high need baby with my first - my son. Nobody I knew had been through what we were dealing with and nobody had solutions or much sympathy for us either. He didn't sleep for more than a couple hours at a time until he was over 9 months old. Any little change or disruption in the schedule would result in hours of crying and no sleep for weeks on end. I thought I was in a test of human endurance. Then there was colic, ear infections, gerd, and I thought I was going to drop dead some days. I also worked full time at a stressful IT job where being out for a sick child was taken as a sign of company disloyalty. I started to be treated like an incompetent outcast at work. I used to say out loud that I wished that I had a wife at home who could stay there and just take care of all the real-life things there are to deal with like all you guys have. They never got it. None of them ever had to stay up all night with a baby or deal with any kind of inconvenience because of sickness, doctor appointments, or anything really.
It sounds to me like you need to get some relief into the house. You need the doctor to write orders for some in-home health assistance to take the night shift. You will beat your grandma to the grave if you are not doing healthy things like sleeping, eating well, seeing the dentist & doctor. Things will only deteriorate for you and grandma.
You & your mom do not have to shoulder this by yourselves. There is help out there. There are respite programs. Please contact your area agency on aging to get connected to them. It sounds like your current state is pretty awful, and that is not sustainable over the long haul. Caring for a dementia patient of any kind is a marathon, not a sprint. You can't be super human indefinitely and you must find your resources.
Nobody wants to go into care, but that is another legitimate option for grandma. My mother is in a memory care unit specifically constructed for dementia patients. It's secure and she gets care there that I could not personally provide. Activities, stimulation, health care, therapy, meals, meds, and a hair appointment at the onsite beauty shop. I would not take this choice off the table.
Another difference is the cost of daycare. I doubt many mothers would work if child daycare cost as much as elder daycare.
I do have to admit that caring for a chronically sick child is very similar to caring for an elder. There are the doctor appointments, the all-nighters, the medicines that are used to buy a little more time on earth. Caring for a chronically sick child is probably the toughest job on earth, because a parent is watching their loved one pass at such an early age. There is not the comfort of knowing the child lived a long and happy life.
Unfortunately I don't know either how to make others understand how difficult caregiving for an frail elder with dementia is. I guess the only way you can be completely understood is to come here or a support group where there are others that are going through the same thing.
My brother and sister and aunts..etc. are all pretty clueless as to how things really are. My brother and sister also live about a 12 hour drive away and have suggested if I need a respite I can drive them to where they live.. for a few days.. then come pick them up! So cluelessness abounds everywhere..
I just wanted to say I understand what you are going through and that your mom and grandma are sooo blessed to have you. I can tell you really care for them.. .
God Bless...
You are right. Your friend immediately tried to relate your experience to something she could readily imagine. And I too would be sorry for the poor li'l dog. However. Seriously? Other people might find her finding an equivalence between your husband and her dog extremely offensive - there is no equivalence. It is not in the same league. But your caring at all says a great deal about your greatness of heart - as well as saying that you are seeking out blame and you must stop!
Littlemisskitty, I'm afraid I laughed all the way through your post - not at you, at the blissful ignorance and cluelessness of your sister. Bless her heart. Caring for a physically dependent elder *could* be said to have parallels with caring for a helpless infant, only without the delightful daily progress, ease of handling and hormonal imperatives. In other words, it's much the same, only without any of the fun or fulfilling bits and with no oxytocin to warm your heart. And it's much harder work, getting harder every day. And its conclusion is not anything you'd want to think of yourself looking forward to. Other than that, very similar!
You have two options. Leave her be, having explained to her once that until she has done your job she has no idea of what she's talking about and you'd be obliged if she wouldn't vex you with her nonsense. Or, arrange a job swap for, say, one week. That should shut her up a bit.
But you love your sister and she has had a rough time and she *is* doing the vital job of bringing up small children, so I understand that you don't just want to turn up at her door and slap her. Perhaps you could keep a Grandma diary for a while and send it to her? Or daily bulletins? It's the reality of the grind, the tedium, the mildly disgusting daily routines, the nights of being at your wits' end trying to pacify and comfort a fully grown adult whom you can't just rock to sleep or play peek-a-boo with or even stick in the car and take for a drive - these are the things she doesn't know about, couldn't know about, until she's been there. So I don't blame her for not realising, either. Maybe you could be glad for her that she's being spared this, too?
Tell her you miss the closeness you both had before you were on such different planets. One she understands what your world looks like close up, she will be more supportive I am sure; only don't expect too much of her will you? For these few years, you are going to be miles apart emotionally and in terms of your experience; but with luck and understanding you'll get back together, given time. I wish you all the best.