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Thread: My mom in surgery today

  1. #41
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    Lisa,

    You and your sister, and your SIL have a lot on your plate! Now would be a great time to research home health aides. My MIL was mostly determined to do stuff for herself. She would get exhausted and make her back problem worse. That meant her doctor would try stronger pain killers - till finally she was TOTALLY wacked out. One of us had to stay with her 24/7 for a few weeks. I took the opportunity to take the bull by the horns. I researched the services offered by our county's Office of the Aging, and got the process started. That whole thing can take as long as a couple of months. So - I called one of the agencies from a list they sent me and we hired someone to come in once a week to clean and help with her bath. Once she was off the pain meds, she was capable of being alone. She was crabby about the whole idea of a home health aid - but she had no choice in the matter, and once she had someone, she was thrilled to have the help. It cost her $40 a week until the county assistance came in. The amount she has to pay has gone steadily down as inflation has reduced her income. It started out costing her about $5 for an side for 2 hours. Then it went down to $2 and now it is nothing. It is often hard to persuade the WWII generation to accept help like this. We got round that by emphasizing that the service was paid for by taxes that she had paid all her life.

    Hopefully you can get something going that will help your family out. I would hate to see any of you suffer from care-giver burn-out. I am worried a little about my husband with that regard. I do the cooking - but when I am bad that is about all I can manage. And sometimes I can't even do that. He is a very nervous person and goes into over-drive when I am not doing well. I worry about him. So - don't get overloaded if you can possibly help it. With your illness, you can perhaps do the research and phone calling needed to get some help going. Sometime for folks like your sister - it is one more thing that they can't fit it. Or - they view getting outside help as a failure on their own part. But ANY amount of help will keep your sister from burning out. Good luck!!
    Jacquie (aka Lifelong Booknut)

    Updated status: "Honorary Weggie"

  2. #42
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    Thanks, Jacquie. Yes, it will be high on my list of things to do when I get there; hire some help for them if they haven't already done so, especially my parents as my mom won't be able to go downstairs or use the washer and dryer (which is downstairs and requires bending). They will likely need to pay privately. They're retired, my mom is a spender and my dad has a 'broke' mindset due to growing up poor with 11 siblings. So it's a tug-of-war, but I'm as strong-willed as he, so I will loosen his grip on the bank card. I'll start by having someone come in and do all the things that haven't been getting done. He'll be so relieved he'll realize what a good use of funds it is, and that it doesn't cost that much. Someone who's good at what they do can accomplish a lot around the house in a few hours. Certainly more than I can these days. And don't worry, I won't and can't get overloaded. As soon as I reach my limit I start feeling so crappy I have to sit or lie down and not do anything else until I've rested... So that's what I do! Last night I fed my son dinner 1.5 hours later than usual because I hit the wall right before I was going to start making dinner. I had to lie down for an hour, then try again. (Hubby had to work a bit later than usual; normally when this happens he just takes over). Sometimes when that happens I just order in or stick a frozen pizza in the oven, but he was looking forward to turkey tacos and he seldom wants to eat actual food... He's a chicken fingers and fries and white-everything kind of kid. So didn't want to miss the opportunity of getting in a good balanced meal that he actually wanted to eat! I'm noticing more and more that I can't do much in the evening. So I'm just planning around being home and not doing much in the evening. If hubby is busy or too tired to clean the after-dinner mess, I just leave it until morning when I get a few new spoons hopefully. Still learning to let go of my idea of how things should be and how much I should be able to accomplish. It's a work in progress. The hardest thing is to remember not to compare myself to others. FB and pinterest can be very self-defeating. I try to remember the saying I've seen on one or the other about not comparing your life to someone else's highlight reel.
    Just when the caterpillar thought the world was over, she became a butterfly.
    - English proverb.

  3. #43
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    Quote Originally Posted by pberggren1 View Post
    Mom went to see the chiro last week. He said she does not have spondylolisthesis. So she went to see her family doc and she has a CT booked for this Thursday. No idea what it could be.
    I pray for your mother that it will turn out to be something simple and easy and fast to treat
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

  4. #44
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    Now mom says that she does have spondylolisthesis but the chiro cannot help her. I told her she must be mistaken. She says no. The chiro told her the pain is not related to the spondylolisthesis. I said: You still need to have the spondylolisthesis corrected by the chiro. Parents, too much grief lately.
    Phil Berggren, dx 2003

  5. #45
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    Update from Calgary. My mom is now home from hospital and trying to settle into a new routine. My parents are both stressed and bickering because they're exhausted and my mom is in pain. The home was assessed by OTs who will come back and install a shower bar and whatever else she needs to manage here safely. I have been so busy with just the day-to-day that they need help with that I haven't had a chance to make many phone calls about the home help. I'm pretty much in the kitchen or in the car. Yesterday it was take my son to camp, take mom to an appointment, pick up sister (in foot cast) from work (which always means waiting around while she finishes meetings and gets stopped by staff members etc. who want to talk to her), drop sister at hospital to see friend whose dad was dying, pick up mom, pick up lunch, pick up sister, head home for lunch, take sister speed-shopping because she has nothing to wear, pick up son from camp, drop off sister at home, back home for a rest before back in kitchen to make dinner, fight with my dad while making dinner, both me and my son in tears. Sigh. Needless to say I'm exhausted and looking forward to even a trial shift of a home helper so I can take a break and take my son somewhere fun. He's been very patient with lots of boring adult stuff going on and not a lot of playtime other than when at camp.

    Mom does not qualify for home health care because with my dad's help and the assistive devices she can manage bathing, grooming, dressing and bathroom. Household tasks are a different issue and not under the home health care umbrella. We have someone from an agency coming on Monday to do an assessment and in the meantime a friend has given me names and numbers of a couple of caregivers from the Philippines who are looking for work. So I will call and have someone come do a trial shift. It's tricky because my mom is used to doing things her own way (familiar story, I'm sure) and stands in the kitchen either ineffectively trying to help but kind of in the way, or sits and watches and (kindly) directs and corrects what I'm doing perhaps differently from her. My dad is just a wreck and very difficult to deal with. I find myself becoming the defiant teenager in his presence. Funny how we slip right back in to old patterns. Except it's not funny, it's really upsetting me.

    Anyways, that's about it for now, I just knew it would help to share it with my GPA/WG family. I am here until Monday and my hope is to have a helper in place for them before I leave, and take my son on at least one fun outing so he doesn't feel like he's been either at camp or just sitting around the whole trip. I'm also going to line up my own helper for the day after we get back so I can have a good long nap while she plays with Simon! He did have a rather epic game of pool with Batman, which he described as "he did the 8 the best" (fancy sinking of the 8-ball at the end of the game). I think thus far it's been the highlight of his time here. He also played some kind of cool hand-game with Alysia, who stepped in as he was trying to climb up my body and I was getting exasperated; just when I needed her to! Gotta love having another mom on hand, they just get it... My sister and I are also planning a bit of an intervention with my brother, who is very busy saving the rest of the world but either doesn't see the need or doesn't have the time, to help out our parents. I'm going to suggest that since he doesn't have the time he contribute what he IS able, by helping with the cost of the home help. My parents have a beautiful home and comfortable life but are retired and don't have enough cash flow or at least feel that they don't--I don't know enough about their finances to know whether it's a valid concern or more of a fear--either way my dad will resist taking on the expense...

    Wow I'm really rambling here... I could go on and on and on... But I feel somewhat better and can always add more later. Thanks for listening!!
    Just when the caterpillar thought the world was over, she became a butterfly.
    - English proverb.

  6. #46
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    I know how you feel Lisa. It is not easy for sure. Ask your dad flat out what the income is and expenses and cash on hand and other monies and investments are and do a budget. Then ask your brother what his cash flow is like. I would think between the 4 siblings something can be arranged. I know it will be hard for you to leave in a couple days.
    Phil Berggren, dx 2003

  7. #47
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    wow Lisa, it sounds crazy..... you don't have a min to breath
    my mother has parkinson disease for many years and in the last 9 years she has a girl from the phillipines who helps her, with everything: dressing, house keeping, cooking. she even makes her pedicure.
    I hope someone else will come to give you some help becauer after all you need to keep your spoons....
    I wish I was living near, so I could have come to help....
    sending lots of hugs. take care.
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

  8. #48
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    So far, thank G-d, I've been ok while here and when u can't do any more I stop. Today is my last day and we're all heading to my brother's for a BBQ dinner, so I'm off cooking duty for the evening and we have leftovers for lunch! Yay! The day of non-stop driving was hilarious in some ways, I was calling my dad's truck the gimp-mobile SO politically incorrect I know, no disrespect intended but my mom and sister were both making light of the situation, humour heals and all that, and complaining that I don't have room for all the assistive devices in the back... My sister used a scooter that she kneels on with the leg on which she's had foot surgery, and she scoots around her job with a Barbie basket and a bell to ring... It's pretty cute! And my mom has a walker...

    the beautiful thing about all of this for me is that I have whooped Wegener's ASS these past few days and once I've had a good rest, haven't felt worse for wear! That could change when I get home and decompress, and I'm prepared for that, but I'm proud of what I've been able to manage, and I realize that I've improved because there's no way I could have done this a few months ago. And now, everyone here needs breakfast.
    Last edited by LisaT; 08-04-2014 at 11:24 PM.
    Just when the caterpillar thought the world was over, she became a butterfly.
    - English proverb.

  9. #49
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    I haven't been here in ages... As expected I came back exhausted and have been sort of crashing on and off... I'll have a good day or portion of a day (in which case I'm busy with the kids in the nice weather), and then I'll hit the wall and sleep for as many hours as life will let me rest uninterrupted. The day before yesterday it was a three-hour 'nap' until hubby and kids came home and woke me, then back to bed two hours later when the kids went to sleep. This is the only way I can survive/make up for the busier times. I did manage an overnight trip to whistler with my family and some fun with the kids. Unfortunately, I've been exhausted since and awoke this morning with a virus or something, stuffed nose, sore throat etc., which now makes me a bit panicky because of all the breathing problems and choking I've had in the past due to subglottic stenosis. I'm trying to remind myself that the stenosis is better and I should be able to keep a clear airway even if congested, at least I think that's the case. I was supposed to take the kids somewhere today but will have to rest... Fortunately I booked my sitter for this morning because I was planning to do some tidying up. I will just go back to bed when she comes. this is why 'the list' is never-ending and things don't get done, but I try to remember that my kids will have good memories of time spent together and won't be remembering how organized or disorganized my pantry is. When I finally get that great day that I feel well, the kids are in school, I don't have an appointment or test and I'm not exhausted by the time I've loaded the dishwasher, I will organize the pantry.. And the craft supplies... And the garage... And everything else I've been meaning and wanting to get to for years. I'd love to get back something more resembling a 'normal' energy level but as long as I need the extra rest I have to make myself get it, or nothing else works. Once I hit the wall I'm pretty much useless anyways. This is one of the lessons of this disease that I keep learning (or not) over and over again. It's hard to pace yourself when you're so relieved to finally have some energy, but the. It's so easy to overdo it and become depleted again.... Sorry this is so rambling, but I guess if there's anywhere I can get away with it is is the place. I will try to catch up on others' posts too, I've been thinking about y'all and just had my hands full.
    Last edited by LisaT; 08-05-2014 at 10:43 PM. Reason: Typos
    Just when the caterpillar thought the world was over, she became a butterfly.
    - English proverb.

  10. #50
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    Nice to hear from you, Lisa! It all sounds like what we all can relate to. You have been through a lot lately and it is no wonder you are exhausted. I also have a houseful of disorganization but no houseful of kids to go with it. So I think you are doing fine keeping the kids' needs met, utilizing a sitter, etc., and you can only do what you can only do. I don't remember what treatment you are on or whether you even got a real diagnosis. If you are getting a standard treatment, your bloodwork should be improving and yes, you will get back closer to a "normal" energy level. I realize you have another issue besides the Wegs, and don't know how that fits in to the overall picture of day to day life. In any case, keep rambling away, whenever you want! We are up for it.
    Anne, dx'ed April 2011

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