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.
Before going to bed lastnight, I covered him with his regular fleece blanket, a large towel on top, then another fleece blanket. He was getting mad at me, cussing me out, and the last I saw before falling asleep, he was trying to kick it all off. I woke up this morning, the blankets, towels were on the floor. And his legs were soooo cold, icy cold. Tonight, it was the same. But this time, I kept telling him that if his legs freezes, it would stop circulation, and they would have to cut his legs off. He agreed for only 1 blanket. I think, tonight, just before I go to bed, I will sneak another blanket on top of his legs.
Well on Wed morning around 3am I hear a call from the kitchen "Veronica I am in trouble" I found him on the floor by the fridge claiming to be paralysed. I am weak and weight 123 and he weighs 240 !!!!! Anyway I coached him up haveing asked if he wanted 911 Once up I had him walk behind me hanging his arms over my shoulders and got him onto a chair then fetched his cane which he never uses. he has slowly recovered his strength and when we saw the surgeon on Friday he said this happens a lot after anesthesia. hubby called the neurologist when it first happened and he did get two call back but did not find the phone fast enough. now he is mad becaus the Dr did not make more effort. It clearly tells you in the instructions if this is an emergency call 911 and I am assuming that hubby's message that he was 90% paralysed would have been considered an emergency by most people. Not me I am afraid because I manage to keep calm under most conditions -well at least that is how I am able to present myself even if my heart stopped beating ten minutes ago. I learnt that as a Hospice nurse when I would get to a home and 20 family members were milling around yelling "fire" and everyone is too paniced to pick up the fire extinguisher. I would part the crowd get to the patient even as I knew there was nothing I was going to be able to do and then direct the crowd to do something. Get a bowl of water , put the kettle on, fetch some clean sheets, tie the dog up clear the path, call the county, here are the keys some one move my car (I knew the funeral home would have to be called within the hours) and get the snow plow out here. That is why people say it takes a special person to be a hospice nurse. Not because you are especially compassionate, not upset by caring for the dieing, have all kinds of comfort tricks up your sleeves or know how to use the meds but because you can keep calm or at least give that appearance and think out side the box. Not patting myself on the back just explaining why so many nurses burn out in hospice in the first year and I was able to last ten and the best of my former colleagues are up to 20 now. It is a gift but it is the gift of self confidence.
Anyway I am totally exhausted
Crazy, your bfs dad may be a wonderful man but he is not your wonderful man. I am sure he is truly appreciative of all you do for both of them but is he paying you well? i ask this because you must be young and wonder waht your future will hold when bf comes home from sea and finds not a fun young chick but someone that looks 15 years older with straggly hair no make up and the grey hairs advancing at an alarming rate. Don't you think he may be tempted to find a newer model even if it is on the quiet. Feeling as you do where will you find the energy for romance when the minute you hit the bed your lights go out until mother comes and screams at you for not walking the dog? it is not a pretty picture Crazy and the woman needs to be placed even if you continue to care for the father. he may be in his right mind until he dies and be pleasant co operative and grasteful but he is going to need a great deal of physical care in his final years. Just my thoughts. Blessings.
And you're dealing with two people? And the bf is out to sea? And you're dealing on your own? And the bf's sister doesn't want to step up? And they're moving close to you soon? And you already know ahead of time that you're going to have this responsibility put on your shoulders? You already realize that your bf is going to expect you to bear this burden?
Bwhhahahahahahahaaaahahaha! That is so, so funny. What a freaking riot! When demons take up ice skating in hell I'd assume that heinous responsibility for someone not of my blood. I'd walk. What boyfriend? It's not like he's around anyway. I'd walk and he'd have to man up and deal before any man in the world put that on me. The end.
I've been there. I know what's coming. Never in a million years. I'd run screaming for the hills.
You might want to give this whole situation...and your relationship....some serious thought before you're in over your head. And without help, you will be. Real quick.
I wish I could pretty it up for people. I wish I could talk about how positive the whole long, endless journey was, how much I learned from it, how grateful I was for certain aspects of it....and really, I did learn a lot and I am grateful for a lot....but that's not what I remember most of the time, unfortunately.
No, I remember the horror. The fear. The sadness. The anguish at having to watch another human being, any human being, degenerate in such god awful ways. . .
My mom suffered and I had to watch. Every single day felt like emotional torture. Having to bear witness to those atrocities, day after day, month after month, year after freaking never ending year.... And no matter how rung out you are, no matter how sick or how tired...you can't stop. You can't walk. You can't escape. Somehow, someway, all of you guys find it in you to keep standing up...and up...and up.... over and over and over.... A lot of people couldn't. So kudos everybody...
Take care and stay strong...
When I take the Tums-like pills I only take one at a time -- like one standard size in the morning and one in the evening. Most of the time I don't take them at all. My bones may not be as solid as they were when I was young, but the rest of my body is also not as solid. :)
If they have money, you can apply for one of them to go to adult daycare -but don't call it 'daycare.' Call it by some other name.
And the most important thing to consider - how much does this relationship with your boyfriend means to you? How much does he appreciate and value you - not as his parents caregivers - but as his girlfriend? My mom was diagnosed with dementia when I was age 23. She was bedridden the last 13 years of her life. About 5 years (?) she was a complete vegetative state. That means I was helping caregiving mom for about 24 years. My question to you - are you prepared to spend about 5 - 11 years of life caregiving his parents by yourself? Your boyfriend needs to see you as his love of his life - and not his parents caregivers. If he truly appreciates you in the romantic way, he would agree to find ways to help you help his parents. Not leave it all on your shoulders.
Hm. I don't know, but it sounds to me as if your dad would like help to get the pressure off you. Isn't he expecting you to be pleased, that he's trying to gee up the social services people to get their acts together? I understand that you'd be a bit pessimistic about how fast anything might happen; but again, this doesn't read to me like anybody thinking that your caregiving is anything less than great. You're more than a good caregiver, and I can't believe that anyone who knows your family doesn't know that. And - you never know! - maybe this time they'll get somewhere. Fingers crossed.
Book, if you're getting right lower back pain after taking those heavy-duty calcium supplements for a while, should you get your kidney function checked out, do you think? And aren't you a bit young to need them for osteoporosis? Weight-bearing exercise, a balanced diet and sufficient sunshine should see you right, shouldn't they? You're only a young wee thing, you lucky girl!
Glad, you're right, it is mainly absorption conflicts that are the problem, I think; but possibly also kidney overload - mother's got stage IV renal failure, and do you know I'm beginning to wonder if all these years of blithely ignoring the instructions have possibly exacerbated the problem, oh woe… Not caused it, I'm sure compared to her heart disease and those meds a bit of tinkering around with dietary supplements is a spit in a bucket; but as they say every little helps. I'll rethink the timetable and see what we can do. Bugger it.
Glad, when my dad was taking calcium, he insisted that I buy the Calcium-Magnesium-Zinc mix. He took separately, the tiny vit.D supplement. According to my research at the time, calcium causes calcification in your body. Therefore, it recommended that we take it with Vit.D. But magnesium is good too because it helps counteract the calcium's calcification. Hence my dad's insistence for the calcium-magnesium-zinc. I don't know much about why zinc is important.
I just googled Vit.K and calcium. Calcium causes calcification - in the arteries. The Vit.K protects against cardiovascular disease. Vit.D helps our body absorb the calcium. But, the problem is .. if you start taking all these different pills, you will end up like my dad - too many individual supplements - which clashes - and then you get these huge rashes (hives.)
As for the social worker emailing me, it seems my dad wants them to do something about the situation. He was telling me about it today. How he told the person about this and that, and that she is going to tell her boss - who will do something about it. Which - her boss did - by writing to me. Now, because the new respite worker told dad that she's going to tell her boss, my dad is now going to bug her over and over until she gives in and gives the social worker's phone number. Then dad will call her and call her until she caves in - and tries to get everyone to do what her respite worker 'promised' my dad would happen. All 'against the wind.' Never, ever tell my dad that you're going to do this or that - unless you truly mean it.
You know what they mean about the hospital bed is installed improperly? My dad told me that because of the trapeze triangle lifter is dangling over the right side of the bed (note - not in the middle or on the left side where his left arm is useless). My dad has these fears - fear of turning and falling off the bed (despite the railings), fear of the trapeze falling and hitting him. We need that trapeze. We use it every time I change his pamper. And when he needs to pull himself up higher on the bed.
Deep sigh. I was just about to throw away a patient information leaflet from a nearly finished packet of AdCal-D3 - it's only calcium and Vitamin D, for heaven's sake, how complicated can it be? - when, having an idle moment, I thought I might as well read it.
Do not take within 2 hours of eating, among other things, wholegrain cereals.
Do not take at the same time as iron supplements. Iron and AdCal should be spaced four hours apart.
Deep sigh, again.
I mean, they trot these instructions out like they're simple! And, by the way, I'll put money on it that not one GP in a hundred knows to mention that to their patients. Mother's been cheerfully glugging down the whole lot at breakfast (with her wholegrain cereal) and lunch (with her spinach) for at least fifteen years and more.
Oh bollocks. Wish I hadn't read the bloody leaflet.
So two iron and two calcium supplements each per day, four hours apart and not within two hours of wholegrain cereals or - oh bollocks to it, now I'll have to concentrate on all the other things they mentioned too. Me and my OCD. Terrific.
My mother right now has a badly swollen left shoulder blade, a massive bruise on her right arm, a bruise on her back and another bruise on her thigh (plus smaller ones which are beginning to show after Saturday's fall). The sight of them makes me quail. But even at my lowest moments I know that anyone who knows the family also knows how hard I've bust a gut trying to prevent her falling: I'm not responsible, because I can't stop her. I don't even feel guilty, I just feel desperate about it. What the heck am I supposed to do? I get lots of sympathy from her GPs and all the team, nobody blames me, but nobody seems to agree that the time has come to restrict her movement either.
You do *very occasionally* get an inexperienced social worker, or one who doesn't know a client very well, who jumps to conclusions; but it really doesn't sound as if that has happened here, not if the email report was just marked for 'information.' When there's a perfectly reasonable explanation for a problem, that will be accepted. Nobody is going to blame you for things you can't control, such as your father wriggling his feet off the bed if he likes it that way. Honest.
I know it's still upsetting, but here is a back rub to cheer you up. Call the social worker on Monday and have a good chat with her. She's there to help, don't forget.
One person dies every 3 days of cancer here on island. I have heard in this past week of 1 person dying of cancer (she fought it so hard, flew to Japan, and nothing is working), another is fighting it. Bro's long distance girlfriend's SIL's kidney & liver failing (she's under dialysis.) They're going to amputate her left leg hoping it would stop her body from shutting down.
You have a home care nurse that visits regularly that knows how difficult the situation is. Ask the social worker is she can help to get your Dad in for a geriatric patch evaluation. Because of your Dad's obstinence, now you could get into trouble. There is nothing wrong with stepping back and letting the pros take care of it.
An additional thought that I have seen on these forums quite frequently is that letting go is not relinquishing care to someone else. You would still be caring for him, but in a different and more healthy way for your Dad and you. Take care of YOU, Book.
I was upset. And wrote her a long email back. I have offered to set up a meeting with her and dad's home care nurse so that she hears it from an outside source our home situation. OMG!!! My dad is just beginning in his dementia and I'm already being 'reported.'!! This is going on my record. Strike 1.
If this continues, I really need to seriously think of moving out of here. I will NOT be subjected to accusations. My dad is still not at the stage where he accuses me of stealing from him. I'm already getting darn scared because I've read enough here on this site what some caregivers have gone through! And my dad is just beginning and I'm already getting my first 'report'. I'm so upset.
online.wsj/articles/life-lessons-from-dad-caring-for-an-elderly-parent-1403886423