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Help for ALL caregivers
by Reirei, Apr 10, 2008 02:28AM
To: Everyone interested in this subject
I posted this infomation on a specific post, but then realized ALL caregivers need this information. I cut and pasted my original information and started this new thread.
First of all, know that I am an Occupational Therapist who works in home health and deal with this problem EVERY single day. At the same time, I was a caregiver for my father for 6 years and now my mother for the past 12 years. I have MUCH empathy and personal/professional experience that I could write non-stop for 24 hours per day 7 days a week and 365 days a year, but I won't bore you. I'll keep this post short and highlight some pointers.
Often times, people get caught up by trying to be good doers and quickly get in over their head. The people we take care of have rights, but so do caregivers. It usually comes down to power and control issues.
Know:
1) You must set clear boundaries as to what is acceptable and what is not acceptable. Once set, there are no room for give and take.
2) It's important to ask for help instead of trying to do everything yourself. If other family members are involved and not pulling their share, then you must be specific in asking for help AND delegating specific tasks.
3) If your spouse is involved everyone helping MUST be on the same page for the benefit of your relationship. So, the two of you NEED to talk and agree on the situation at hand.
NOTE: Don't forget to make a date with your spouse to keep your relationship healthy, even if it's a date for a cup of tea and the ONLY goal is to focus on one another. Also important for this to be non sexual or the main caregiver will feel this is ONE more thing they must do. I promise the intimacy will benefit if you do this.
4) It's OK to say NO to unreasonable behavior and NOT feel guilty over setting limits especially if the person can't set it for theirself.
5) Pick your battles carefully. Choose over standing for the important things and let the non important things go for another day. Usually, it's the no-important things that drive us absolutely nutz.
6) Start slowly in making changes to benefit YOU. Rome wasn't conquered in a day. Start with one task at a time and the next day do a little more.
7) It's OK to ask for outside help with specific tasks, but this means you must let go and let someone else do the task..
8) There is a book called the 36 hour day written specifically for caregivers. It's a must have to read.
9) Most states have a respite care program. Check with county/state/local aging centers for information.
10) If the situation is so out of hand and you truly have had it, then talk to the doctor and put it in his/her hands. If the doctor says this must be done, then it's out of your hands and it MUST be done. Let the person be mad at the doctor and talk to them. Know health care professionals deal with this ALL the time. It really helps if we know that the caregiver wants intervention. It's even more important that the recommendations be followed up if you seek our help.
11) Learn how to unarm a power struggle before it becomes an issue. There is much literature on the net and local library.
I'll take my own advice and start slow with my suggestions. Try these 11 things first, let me know how it goes. I'll check back often now that I've found this site.
Good luck,
Reirei
I posted this infomation on a specific post, but then realized ALL caregivers need this information. I cut and pasted my original information and started this new thread.
First of all, know that I am an Occupational Therapist who works in home health and deal with this problem EVERY single day. At the same time, I was a caregiver for my father for 6 years and now my mother for the past 12 years. I have MUCH empathy and personal/professional experience that I could write non-stop for 24 hours per day 7 days a week and 365 days a year, but I won't bore you. I'll keep this post short and highlight some pointers.
Often times, people get caught up by trying to be good doers and quickly get in over their head. The people we take care of have rights, but so do caregivers. It usually comes down to power and control issues.
Know:
1) You must set clear boundaries as to what is acceptable and what is not acceptable. Once set, there are no room for give and take.
2) It's important to ask for help instead of trying to do everything yourself. If other family members are involved and not pulling their share, then you must be specific in asking for help AND delegating specific tasks.
3) If your spouse is involved everyone helping MUST be on the same page for the benefit of your relationship. So, the two of you NEED to talk and agree on the situation at hand.
NOTE: Don't forget to make a date with your spouse to keep your relationship healthy, even if it's a date for a cup of tea and the ONLY goal is to focus on one another. Also important for this to be non sexual or the main caregiver will feel this is ONE more thing they must do. I promise the intimacy will benefit if you do this.
4) It's OK to say NO to unreasonable behavior and NOT feel guilty over setting limits especially if the person can't set it for theirself.
5) Pick your battles carefully. Choose over standing for the important things and let the non important things go for another day. Usually, it's the no-important things that drive us absolutely nutz.
6) Start slowly in making changes to benefit YOU. Rome wasn't conquered in a day. Start with one task at a time and the next day do a little more.
7) It's OK to ask for outside help with specific tasks, but this means you must let go and let someone else do the task..
8) There is a book called the 36 hour day written specifically for caregivers. It's a must have to read.
9) Most states have a respite care program. Check with county/state/local aging centers for information.
10) If the situation is so out of hand and you truly have had it, then talk to the doctor and put it in his/her hands. If the doctor says this must be done, then it's out of your hands and it MUST be done. Let the person be mad at the doctor and talk to them. Know health care professionals deal with this ALL the time. It really helps if we know that the caregiver wants intervention. It's even more important that the recommendations be followed up if you seek our help.
11) Learn how to unarm a power struggle before it becomes an issue. There is much literature on the net and local library.
I'll take my own advice and start slow with my suggestions. Try these 11 things first, let me know how it goes. I'll check back often now that I've found this site.
Good luck,
Reirei
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I work in a Nursing Home so I do deal with illness on a daily basis and am very compassionate which makes it easier to deal with this nightmare
I will try to follow your recommendations and once again thank you for sharing your experience
Another thing that might help you deal with those frustrating moments is to keep a journal. I'm the type of person that has a slow verbal response at times. For example, if someone says something in a negative way to me I don't always have a quick comeback, but after thinking about it for a few minutes, I beat myself up and say "I should have said this/that" which only sets me to put myself down.
The one thing that caregivers need at times is to have someone listen to THEM and their woes. Keeping a journal will do that for you. It will give you a release of those negative feelings or difficult situations. Sometimes I need to simply talk out loud and weigh the options to help me figure out what's best. Journaling does this for me. I found when I first started to journal was with my cup of tea in the mornings (my time). Especially at first, I wrote forever (so it seemed) and cried even more. As I became more empowered and stronger to make better decisions I found that I only needed to write during those difficult times. When things became better, it was nice to see where I had come.
On an ending note, my first post noted a book called the 36 hour day that's a must have for caregivers. One thing I failed to note was this book was written for caregivers dealing with alzheimer's. Surely, the book is very well written for this population. At the same time, caregivers who are dealing with other situations can benefit from it too.
Good luck and don't forget to take time FOR YOU!!! everyday!!!
Hugs,
Reirei
Lucky for me, my mother is still in an "assisted living" level of health, with ME of course being her assisted living person. With fairly advanced emphysema, she has major energy issues, which have reduced her to only managing to fix herself tea and snacks, fold laundry if I put it in front of her, walk her dog slowly around the block, drive around the corner to the store, water a couple of plants on the porch (she keeps having me plant more and more things that she can't take care of), occasionally plant a bulb or two, and do crossword puzzles.
My mother is a major packrat, and she has such poor kitchen habits that she could turn a kitchen into a biological red zone in a matter of weeks left to her own devices. The whole reason we moved her in with us was because she was basically killing herself with spoiled food, constant inside smoking, and lack of sunshine.
My issues, other than the general issue of having my annoying mother as a permanent roommate, have to do with her expecting me and my husband to do dozens of tasks for her all the time without ever thinking about how she is affecting OUR life. I have come to HATE the phrase, "would you mind...?" I don't mind changing her sheets, because that is physically too difficult for her. But I do mind being treated as an errand girl. I have finally come up with a partial solution to that problem. Now I have mom write a day on the calendar that she wants me to run her around for errands. That way I can plan the rest of my days without her incessant "as long as you are going out, would you mind..."
And I mind that I can't vacuum or dust her room because it is a mess. The last time I did a good cleaning to get rid of winter mildew, spider webs, etc., she didn't say thank you. She demanded to know where I had put some little scrap of paper that was important to her.
So she can just live with all that dust and dog hair. I'm not going back in there.
And I'm tired of her getting pissy periodically when she goes looking for something and can't find it, even though I spend all my time arranging the house so that all her stuff is easily available yet out of my way. Last time it was something in the gardening stuff, which is all in one place in the garage except for the stuff on the porch that we use all the time. Instead of saying to me, "I was looking for the whatsit in the garage and couldn't find it. Do you know where it is?", she said, in a really snippy tone, "I was looking for something in the garden stuff and it wasn't there, and I got REALLY MAD." Yeah, well good for you, mom.
And she got mad at both me and husband over the bread tie. Did she ever once say to me, "I can't use these plastic bread things with my arthritis. I need twisty ties, so save them when you see them."? No, of course not. Instead, as she was fighting with a plastic bread thing, she snapped at both of us about how much she HATES those things and why can't there be any twisty ties around.
Anyway, the fight we got into was about me shredding something of hers with her new shredder. My mother is buried in paper because she won't throw anything out. And her shredder broke a couple of years ago so account documents, tax documents, etc have stacked up. Over the last year and a half, as I have done my usual moving of her current stack of papers on the table to her office table and computer, I have seen certain things come in regularly that she never even opens. EVER. One of those is some health insurance statements that she gets once or twice a month. Never once have I seen her open one of those. They just stack up in various piles. She doesn't even remove the envelopes for recycling so that the piles aren't as high. That particular set of unopened envelopes were obviously destined for the shredder. A year ago, or even 6 months ago, I would have asked her and double checked that it was okay to shred them. But after a year and a half of stacking them, unopened, I no longer felt the need to go through the annoying process of asking her about anything to do with her piles of ****, so I was testing the shredder by running through some of the specific unopened stuff. She came roaring in and started YELLING at me about "her" stuff and me not asking permission, and me mixing up stuff on her office table (the slob packrat accusing the neat freak of messing up the piles that the neat freak has been keeping stacked). I said that I was just shredding the unopened things she had stacked up for over a year and wasn't "messing with" her real paperwork and was not "mixing up" her piles. She didn't hear a word I said and just started ranting about how mad I would be if she touched my stuff (actually, if she had noticed for a year and a half that I was stacking up unopened mail from the same source, and had decided to shred it, I probably would have thanked her). So of course I started yelling back at her about how I would never touch her stupid stuff again and that SHE could now shred the mountain of papers she had stacked up, oh and by the way, she could also shred the two boxes of tax stuff in the garage, and oh, by the way, her stupid laundry is STILL in the garage where I put it because she wanted to do that batch herself because of items that needed to be sprayed or not dried but that was 5 days previous. And then I slammed a bunch of doors and threw one of her tax boxes in the office. And we haven't spoken since.
My mother's control freak behavior hides behind her slobby packrat behavior, but it is definitely there. When she moved in with us (we had just completed an interstate move, the second in three years, so I was really sick of packing, moving, and unpacking), she hired a couple of college students to help her pack. That involved micromanaging everything they did, which slowed the process way down. And when she could have been sitting at her computer table sorting her writing and papers while she micromanaged the kids, she did nothing. So when she ran out of time, I was the one who had to come over and pack all the rest of her apartment (about half of it) and clean the entire place by myself. That included me very carefully stacking her writing together and putting it in a labeled box. Well, months later, when mom finally felt like digging through that particular box, she had one of her hissy fits about how the papers weren't stacked in the right order. I'm still mad about that. What a load of ****. You don't like the way I packed the box? Then you should have packed it yourself.
Then, when we had to use her table at thanksgiving, she was too busy socializing to walk into the office and stack stuff the way she wanted. So a couple of weeks after thanksgiving she finally notices that the stuff on her table isn't EXACTLY the way she left it (how the hell can an oblivious slob packrat even tell?) and starts one of her pissy rants about "her" stuff. I simply reminded her that we had had to use the table and she hadn't felt the need to come back and police the moving of her ****.
Does this all sound like a bunch of petty stuff? Sure it does. But as most people who have to move a parent in know, it's the little petty stuff that makes you crazy (short trip, as my husband says). I keep thinking about how mom's energy level is less than it was last year, and it is going to be less next year, and her level of care will have to keep escalating, and how am I going to keep from killing her before she dies. I do know that she is hoping for a quick demise rather than a slow downward spiral, because she has some fear of being "dependent" on people (what a joke. She's one of the most dependent people I know, and has been for many years).
My husband is now refusing to walk her dog anymore, mostly because mom started EXPECTING it, like she starts expecting everything.
So, after this long long rant (gotta rant to people who know, poor hubby gets enough of it) comes the good part. I get to escape for 7 weeks. HUGE preparation effort involved in leaving my mom alone for 7 weeks, but this may be the last time I can be gone that long without hiring an actual care person. So to get ready to leave her alone, I rearrange the entire kitchen so that her stuff is all out on the counters and shelves in her reach (she already has 4 easy access storage shelves in the kitchen for all of her pills and supplements and goodies. All screw on or glass food storage jars replaced with plastic containers with pop off lids. Im filling the freezer and pantry with single serving food and easy make stuff. In the yard we have to set up splitters on all the faucets and run soaker hoses all over the yard, because mom can't unscrew hose attachments and she can't drag a hose around the yard. The hanging plants will probably die, because she can't lift them down and can't lift a hose or water can up to them.
Her friends have all been notified that she will be alone for 7 weeks. I've asked mom to ask a couple of her friends to help with changing her sheets. I have a cleaning service coming in twice while we are gone, but of course they won't do dishes or sheets. We are taking our cats with us so that she only has her dog to worry about.
I knew moving mom in with us was going to be difficult, on a mother/daughter level, on a roommate level, and on a caregiver level. But you can never really picture the reality until you are in it. I'm hoping my 7 week break will keep me sane enough for a while to keep on dealing.
Forgive me, but I had to chuckle several times throughout your post. Not because of your plight, but because of the familiarity of the situation to my mother and her sisters who are all in their 80's - the depression refugee's. They feel that if something is useful/functional/still in good working order then it can NEVER be thrown away and someone/somewhere can use it. Their goal is to simply find it a good home. I wish I could post a picture of the dirty ugly stuffed handmad rooster that made it into my home this week that was purchased at a flea market for 50 cents. If you have ever seen the movie the YaYa Sisterhood you will see my mother and her 2 sisters. Hence, my nickname for them "The YaYa's".
Fortunately/unfortuately, we are NOT alone. As a therapist, I deal with this situation everytime there is a parent/child/caregiver relationship. Most are not to our extreme's, some ARE worse if you can imagine. This is one of the situations where it's time for us to be the parent, set limits or consequences, and our parent must now be seen (not treated) as the child.
From your post, I'm not sure if you just needed to vent (which is a good thing), or if you were looking for help.
I can only tell you what has worked for me. I have learned from my husband who is better at setting limits than I am. I tend to go for the reward system - you give me what I want (something big, but reasonable). For example, I'll say "If you clean off the top of your dresser, I'll take you to lunch or bingo." My husband has set space limitations. For example, he has NO problem saying and meaning "What ever fits into your room is yours and you can keep. Whatever has to be shared in my space I get to have a say in where it goes." He is also VERY good about designating HIS SPACE. We've had to modify those rules to accommodate everyone. For example, my mother has a door that goes to a private porch off her room. It's also a benefit in case of an emergency or fire, there's a fire escape. When a safety factor is involved there is NO ROOM for give and take. We had to be firm with my mother and say "You need to have a clear path for you and your walker to this door in the event of a fire, if you can't or won't do it, THEN I WILL!!!!" Once a month I get her to show me that her and her walker can make it to that door with no problem. It's very hard for me NOT to comment further on the room filled with "treasures".
For us, it has also helped in getting her own little refrigerator for those little food packets that make it's way into our hose. It has also been a blessing for it gives me the opportunity to give her what she does best, is mother. After doing some task around the house, I'll sit down and talk and mention that I sure could go for a cold drink. Not that I want her to wait on me, but it brings such pleasure to her to get up out of her chair and bring me a cold drink from HER refrigerator. I also try to find small projects for her to do around the house. It's even better if we get to do them together, like peeling potatos. I'll say to her, I'm making a pot of soup, how about I set you up at the table and would you peel some potatos for me. It gives her a purpose, a sense of helping. I liked your idea about giving your mother a basket of laundry to fold. One important note, if you give her something to do and she attempts to help, you CANNOT make any negative comments.
At some neutral point, I was able to sit down and talk/listen to my mom about our different styles of living to try to come up with a solution that would make everyone happy. I truly took to heart the suggestions she made to make living together more tolerable. I also try to take characteristics of what's important to her and emphasize a further importance. For example, My mother also likes to stock pile papers, especially crafts and coupons that are never used. I've said to her "I know of a center that is looking for yarn to make for homeless children. Will you go through your stuff to see if you have anything to help?" You would be surprised to see how many bags of yarn came out of that room because she knew that it was going to a good home.
What she didn't know or see the things that I went through and threw away because of embarrassment I would have in giving it in such poor condition (like that ugly rooster). I do the same thing when I give her an empty container to fill that could be stored in the attic or garage. Some things go to the attic some hit the trash. She thinks her things are safely stored, I know things are where they need to be to keep my sanity. Rarely, does she ever ask for anything that has been stored in this manner.
Maybe, in reading my rants you can get some ideas to creatively set up win-win situation which will go the farther distance. One last note, in your post I didn't see you state anything that you and your mom did together that would be enjoyable for both of you. I try to play a game of cards or sit down and sew or cook with her frequently. It's one of her favorite times to sit and tell me about the past, of course with some prompting.
Good luck and let me know how things are going ........
Hugs
ReiRei
P.S. 7 WEEKS away from mom is too good to be true, I would be in heaven. The most I get is an overnight stay once a month from my brother. 7 WEEKS unimaginable. Good luck to your home and prepare yourself for the worst when you return.
I think one of the reasons (aside from the fact that my mother drove me crazy BEFORE she moved in with us) that I am struggling, is that for the two years before this move, my husband and I lived a very isolated life on a remote nature preserve with just the two of us and a big house. Now I have a small house on a busy street and my mother is always sitting on the couch.
I like some of the suggestions about what you do with your mom. I would pretty much take any help from mom except washing dishes. She couldn't wash a dish if her life depended on it (her dishes were so filthy at her house, in the cupboards, that maybe me washing her dishes really is saving her life). She rubs them between her fingers under warm running water.
And YES! little food packets and dabs of take-home food, and a half a piece of toast she didn't finish, and, and, and. If she had sisters helping her collect, the way yours does, I would probably have run screaming into the woods already.
Mom and I don't have much in common. We like to watch certain shows and movies on netflix together, but we run out of ones we both like. We both like to eat out, but with her fixed income and my husband being the only breadwinner at the moment, we have to be careful about going out. We both like to garden but have rather different styles and approaches, plus she can't really do much in the yard anymore so I end up doing all HER gardening as well as mine. I am an early morning person who gets up at 5, and she is a night owl who gets up at 11.
And yeah, I NEVER criticize her laundry folding (she's very good at it, better than me) even though I am a critical person, because it is one of the few things she can do and I could use the help. And she has been better about corralling her papers in recent months, even though I don't think much gets thrown away.
We kicked around the idea of a fridge in her room, but one of the big problems at her house was her biological red zone fridge. She never wraps anything and she rarely takes something back out of the fridge once she has abandoned it there. She also doesn't like her drinks cold, so we keep them on a shelf in the kitchen. She has several shelves that are all her. I did try to get her to store some of her snacks in her room because she is skinny and I am not, and her snacks are trouble for me (my willpower is at the store, not on the shelf), but with her tendency to leave things open, unwrapped, etc, we got ants, so the food in bedroom idea wasn't working. She has her own satellite tv in her room, because she likes to watch tv when she is going to sleep. I had hoped that she would retreat to her room for an evening maybe once a week and leave me and hubby alone in the living room, but that rarely happens, which is part of my claustrophobia. I'm planning to get a job in the fall, even though that will double my workload, because I need a way to get away from mom for extended periods during the day.
And yes, from a caretaker standpoint, I do realize that 7 weeks away from mom is like manna from heaven. I am going to enjoy every single solitary microsecond of it, even though I will be doing a hard physical job.
I do worry that she will make herself sick while we are gone, between eating spoiled food off dirty plates and smoking in the house when she isn't even supposed to be smoking, much less in the house. But if her health declines while we are gone, it will give me fuel for setting limitations.
And yes, I expect to come back to a fridge full of rotting dabs of food, counters full of odds and ends of food, little folded pieces of paper towels everywhere, stinky bowls with puddles of dirty water in them in the sink, dirty dishes in the cupboard that mom "washed" while we were gone, and a mom going into respiratory crisis because she smoked too much when there was nobody to hide from.
At least the cleaning service will reduce that. My sister is paying for it for ME, so that I come back to clean windows and floors.
Again, thanks for listening and responding. Sometimes this is the only place I can come and vent when I feel like exploding.
KL