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.
If only it would last forever!!!
We, the family, would put out most of the food. But our custom is that when you attend, you bring something to the table. So, that's why we would have 2 of the same food.
My dad did NOT know about the mass this past 9 days. He did Not even know that they were having the mass for mom this morning and that the dinner for tonight. When I mentioned it to him this morning, he was surprised. But very touched that my SIL did all that for mom.
Of mom's 6 siblings here on island, only 2 came in to speak to my father. This is the same thing they did when my mom was still alive and bedridden. Most of them would sit outside and not come in to see mom. So, when my mom died, I had NO sympathy for my mom's siblings. When mom was close to death's door, I asked my siblings if we should let mom's sisters/brothers know that she's close to the end. They all said no. Since mom had her dementia 24 years ago, her siblings rarely visited. When she was bedridden, they rarely visit. When mom's baby sister told me that she regretted not coming to visit mom more often, I said nothing to comfort her.
Oldest sis is not feeling well. She looks so tired. I've decided that when I get off work early on some Wednesdays, I will not use that free time to buy things for the house. I will just come home early and let sis have an early off. It's back to like me and dad caregiving mom. then dad had a stroke. Now it's me and sis caregiving dad, and one of us might have the stroke. Since I have my job to get away from dad, oldest sis doesn't even have that option. So, I've decided to relieve her so that she can rest. Plus I'm really really worried that if she has a stroke, then I'm back to caregiving for 2 people!
And yeah, keeping another grown adult fresh and clean takes it's own physical and mental energy. Once I got my mom on a routine of activia it got interesting to say the least. Nothing else was working for her constipation and I was trying everything I could think of, to no avail. The meds from the doc weren't doing much. I finally got really desperate and worried and bought activia thinking it couldn't hurt... it didn't hurt, it helped. A lot. OMG. It was a mess. But it was a relief, too. It couldn't have been good for her to be that stopped up and it didn't seem like doc's were really looking into much, like they just brushed it off when I'd mention her complaints about constipation and that I thought the issue was getting serious... It was frustrating and scary for me not to be taken seriously. I expected tests to be done at that point, but the doc would just prescribe some other med that didn't work... Thank God the activia did. She was fine and pretty regular after that. But yeah, it was like she hadn't gone in years and now suddenly was. I was pissed at the doctors who didn't listen all over again. All residents who came and went constantly and didn't know squat about a patients background and didn't seem to care much.... Very frustrating.
But man, what a relief for me when something really helped. And yeah, keeping her clean at that point was very hard. She couldn't/wouldn't get in the shower, sponge baths weren't enough and she really couldn't stand on her own too long. For a little while with her walker and with aid from us, yeah, but not nearly long enough to get much done. Sean and I ended up with a strategy that worked pretty well, which involved the kitchen sink and sink sprayer, but Sean and I had to hold my mom's weight between us to really get her washed. There were days my back felt like it was burning and I did manage to throw my back out a couple times lifting my mom. The doc thought that I tore a muscle in my chest once after trying to lift her... Yeah, it can become very, very difficult. After a certain point, it feels like you have to do contortions to deal with them and the ever changing new issues that crop up more and more often...
I think it's just about improvising with the elderly. If one thing doesn't work, try something else. Sometimes, that's all you can do. I'd have had to come up with an alternative to a whistle..
I'm really glad your hubs steps up to help you out, RD. He should be. Thank God you can get breaks in. We all need that and must make the time or find a way to get the time for that, at all costs. Even if it means making some other arrangement the parent might not be thrilled with. Even if it's just a day or two. Ok, one day. Hell, there were times I'd have been thrilled with a few hours... Care givers that can recharge are just better all around care givers, at least I found that to be true in my case. If I could rest, I was just more patient. Zombies don't make good care takers. Walking around in a sleep deprived stupor, on auto pilot, dealing with an elderly person who's on a lot of meds, is a recipe for disaster. Towards the end, my son's had to become involved. Or somebody did. I couldn't handle my mom alone. I really needed and required, for my own well being and sanity, time away from those harsh, ugly, unyielding realities. Peace of mind and quiet time alone without constant demands and pressure shouldn't be a luxury. Nobody should ever even attempt to try and go on this journey alone... Even in the middle of a war you have to make some good somewhere, sometimes...
I'm thinking a day or two at the beach is in order. I'm waiting on some good weather. It's been raining, freezing and gloomy for the past couple days. It's not helping my mood any.
I want to get up at 4-5 a.m, go down to the beach with a hot cup of coffee, a thermos with some hot tea and listen to and watch the waves. For hours. And nothing else. Just that. Heaven. I plan to do that when this bad weather blows over. I do miss the ocean.
I like the idea of stuffed animals. We tried that. I wish it would have worked with her, to soothe her. Had my mom been happy with them, or had they worked to calm her, I would have gone out and gotten her an entire mountain of them. lol Let us know if you get good results.
Have a good one everyone...
Actually, Key Lime Pie sounds even better atm... :)
At a certain point I think all the elderly, especially alz/dementia patients, get more clingy because they're declining, they're aware of it on some level and they're afraid. I couldn't blame my mom, but that didn't make it one iota easier to deal with. It got really rough at that point. Sleep issues were popping up. Man. That was a rough patch of road for awhile... And then add a whistle into the mix? Oh please no...
One thing I did while Ruth was being scared and lost. I got her a stuffed animal... something really soft... sometimes if I got her to hold it and talked to her a minute or two she would go back to slhugseep.... does she take anything to help her sleep???? Many people are using Melatonin to help the elders..... I see side effects that I don't like, but it does help them to sleep.... hope you get some rest soon....hugs and chocolate...
m sure that's scary at any age but at 91 she no longer has the coping skills to deal with any of it. I don't want to take the thing away from her and have her actually need me and not be able to call...just running in circles (literally) and wondering if anyone else had dealt with this...
You shouldn't feel uncomfortable in your own home. There's no worse feeling. To me, that's a sign that somethings got to give, to change.
I believe in caring for th elderly. I believe it's a good thing to keep them in their own homes, at least in the beginning/middle stages of alz, if that's possible. But I don't think people should take this job on by themselves, or be required to ever look after an advanced alz patient alone. That was a scary ride for me personally. I had to handle and deal with things that I wasn't medically, or mentally, equipped to handle. Maybe I'm just a wuss, but I feel completely battered mentally after this whole journey. I'm not one of those types that runs to the doc to stock up on the latest new meds. The younger crowd especially in today's world seem to have their own small pharmacies going if what I'm hearing in other forums is any indication. I'm not one to do that. I don't like taking too many meds. But right now, I feel I should be on something. It's like I'm completely falling apart right now to the point where I can't function. I've been out of the loop so damn long there's a part of me that's scared to death at the thought of having to get out in this alien place... The energy it's going to require for me to get to that point is a lot more than I have. My reserves of everything are dried out. I'm one hell of a mess. All I want to do is be left alone, be quiet and rest and sleep. I feel a need for healing on so many levels.
Care givers need a whole lot more help than they're getting, that's simple truth. Again, I believe in caring for the elderly and making sure that they're looked after, making sure they're safe and comfortable and aren't alone. But there should be so much more help, so many more options, for the elderly so that care givers don't find themselves one step away from keeling over. Hard road, indeed.
I'm glad the doc in the other thread is here now. It makes me feel as though someone really CARES what's going on with elderly people and their families and will really listen to the people here about what it's really like being locked behind closed doors with them . Most people have no clue what a care taker of an elderly alz/dementia patient deals with every day, or what kind of workload that is, or how many working, yes working, hours that really translates into, or what it's like to be on call 24/7, for months, years. No company in the US could legally work you as hard as you'll work in the care giver role, nor could they ever get away with working you 100+ hours a week, and a lot of times without pay. That's pretty much what it comes to. Nobody should have to work that hard, that long, ever. The consequences for the care taker is just too d**n high. Doctors shouldn't just be looking into what's good for the elderly, they should be taking a good, long look at their care takers. I don't think doctor's really think about the repercussions to care takers who are literally chained in an alz world, sometimes for years. That's bound to induce a little crazy to come out of just about anybody. And thank God you guys understand that kind of crazy. :)
Anyway, I have no idea what got me started on that little tangent... I'm tired, frazzled and babbling.
It would be nice if, as care takers, we got at least two days off a week, like any other job. Some parents don't like or enjoy an adult daycare. Aides aren't nearly enough. I guess I'm wishing for the moon. And what about some courses adult kids could take that could, in some way at least, prepare them for alz and dementia? Nothing can really prepare you for that ever changing alz world, but it might give people like me enough of a head's up that we aren't left feeling like we've just come out of a torture chamber... Alz, to be honest, was a little too much harsh reality for me. Too painful. Too sad. Too...everything. It's an experience, for all I've learned from it, I wouldn't have minded doing without. I would have loved to have remained blissfully ignorant.
Hope the day is smooth and quiet for all of you!
thanks
One of the few things that did seem to please my mom after awhile was food. She really couldn't do much at that point, so she really looked forward to mealtime. I got to get creative. I actually enjoyed cooking for my mom and trying new recipes for her.
Windy, I admit, I'm no expert in the garden, or with my house plants. I'm blundering along, trying to keep these house plants I now have alive and kicking... I've heard nothing but rave reviews about these worm castings, aka, 'poop'... lol I'm waiting for it to help one of my plants whose leaves are turning an alarming yellow now... I totally enjoy the plants and worry when one of them starts getting sick... I wish I could see all your new beauties, Windy... I love lots of blooming flowers, especially the ones that smell so good, growing everywhere... I'm thinking some vegetables this year and I've already got some great smelling herbs going that are doing pretty good so far...The lemon grass smells especially good! :) Scent is so important to me for some reason and I love to be surrounded by great smells...
I'm blabbing today, yesterday, too...
Last night I went down for a 'nap' at about 5 p.m. I slept until 5 a.m this morning. I couldn't believe it. It's like a miracle. That's the first time I've really slept for any length of time in ages. Yay! I feel a lot better for it.
Rain, rain, rain. Maybe I'll go back to bed for awhile.
I love when you guys share your lives, when you 'blabber' . It keeps me grounded when my stress levels are especially high and I need that most. :)
Veronica, in my aversion of taking pills (even painkillers), I forgot something about why I should Not be skipping a day. I know what you meant when you gave me that advice. The next morning, as I was sitting and warming up the car, I had an “Aha!” moment. I realized something from your words. If I take those darn pills Daily, in my 3 months follow-up test in June, maybe it will say I’m back to normal, and I won’t have to take those pills anymore! So, thanks.
I’m still struggling with father’s skin/rashes. It’s still spreading but it’s not angry red and giving off heat. I’m reaching the point that I can’t stand changing his shirts. It is always soaking wet and very very smelly. The smell sooooo reminds me of “fungus.” It has this very sharp acidy smell emanating from his back/shirt. Even with gloves on, my stomach starts heaving because the smell is just so strong. And soaking wet…even the waterproof pad smells like it. I will see if I can stop by the pharmacy and ask for recommendation. Thanks!
Juddha, I will see if I can try that about the future. I’m very good at daydreaming or fantasizing of having a “normal” life. I’ve been doing that for years until one day I realized it was just fantasies. Then I stopped. What also ticks off are these words: “you Have to” or “That’s why we had children, to take care of us in our old age” or “Do This” “Do That” When he gets so demanding, I just ignore him or until he asks nicely.
I have always been an introvert. I am happier shopping, eating at Dennys all by myself. Just give me a book. If I’m on a long line with no book, I’m fidgeting the whole time, whole body moving, looking all over the place,etc... When I have my book, I can stand there for one hour and not fidget much at all. Going to “church” weekly was very stressful and exhausting for me. We are strongly encouraged to circulate and meet/greet people before and afterwards. By the time I get home, I’m so exhausted. When Friday comes, I’m already dreading going to “church” on Sunday because I will need to talk to people. I finally stopped going.
That is certainly a lot to think about. :)
Lavendar, I absolutely, positively cannot wait to get out in the garden. That is my church too, where I feel closest to God and the miracle of life. I started a few seeds yesterday in flats indoors and was blown away this morning. I hand harvested some marigold seeds last fall. Two of them germinated overnight and are sending up their cotyledons. No way! That's an 18 hour germination. I've been starting seeds for 25 years. Never, never has that happened. The only difference is I used this local guy's worm castings (poop) stuff last year on all my plants and they were twice as large and bloomed their pants off like I'd never seen. Must've been passed onto the seeds. I started black-eyed Susan vines for hanging baskets plus nasturtiums, basil, marigolds and heirloom red and green cabbage, 144 plants in all. Have another six flats to plant when time allows.
And now I realize my blabbering shouldn't be on this thread - if the cap'n can start a what's for dinner thread, I'll start a garden thread, if it will stand. I hope so because it seems to tie in with the solace and solitude we seek but want to share here on AC. BTW, I love cap'n's cooking thread!