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Started taking mom to local senior center for lunch a couple of times a week. (Lunch by Meals on Wheels) financially a good move but I intentionally didn't sit with mom. She had to talk to the folks near her. She actually developed friends! (people who she can talk with even though she does not know their names) and I discovered some art classes that I can lead or take...now that is what I look forward to each week...doing art with others...but actually it is therapy for me!

But last night was the 3rd in a row with only intermittent sleep as mom has a cold or something brewing...and I am exhausted...oops she is sleeping so I best do the same - I remember doing this when my kids were babies...De Ja Vu!
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Glass you may acquire friends at the senior center for yourself-I have two bestirs that I would am so glad are in my life especially with me trying to make sure my brother is getting god care at home-I finally got to his son and wife that they need to come down and hire an aide who gives meds his wife is not handling her responsibilities well at all and refuses to listen t anyone yesterday she called a friend instead of the Hospice nurse when she had a problem-I will fight tooth and nail for my brother and to keep him home during his last weeks.
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Feeling totally frustrated. Was supposed to go to visit my daughter and her baby on Saturday. Started feeling pain in joints & muscles Friday night. Drove halfway to the airport, and called my daughter and said I was not coming. Just couldn't imagine sitting cramped in those little seats for 2.5 hrs while in such discomfort. Went home, got into a flannel nightgown and slept through Saturday and Sunday. I have Epstein Barr Virus, but haven't had a flareup like this in a long time. Do my emotions trigger the attack, or is it random? Feel like I just want to hole up in my house alone for a week. Mom thinks I'll be gone for 2 wks, and I may just let her think I'm gone. Do I get sick to justify a vacation from my responsibilities?
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getnstrong....I ask myself the same question when I don't feel well. Is it just a response to the situation or do I just want to justify, as you said, getting away. If I thought that feeling ill would do it, I might try. But the truth is, I wouldn't get the luxury of pampering myself that way. I would still have to do my job. The only thing that would free me would be a major injury or accident. I don't wish that but sometimes we want that kind of situation to force the hand so to speak. Today was one of those days that I fantasized about just coming home from my job and climbing in bed because I am just ....tired. No chance. I have to suck it up. I do try those little 'getaways' in nature like small walks. They help just a little but sometimes I want so much more.
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Getnstrong. Rest up, take your time getting better and try to keep the stress load down. TURN OFF THE PHONE
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I don't think you get sick to justify a vacation, but I think your body just hits a tipping point and forces you to pull back. After every major family crisis (serious health issues), I get sick. I go and go and get everything back on an even keel, then my body just crashes once it's ok to. I've learned not to try to "soldier on" but I totally stop and sleep for a couple days because otherwise, it just lingers for a whole lot longer. We're not spring chickens, you know, but more like autumn ducks.....
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I found a great website to help you organize people who want to help and to figure out what you need (lotsahelpinghands.com). As part of setting up the community to help care for my mom, I had to take things from my calendar in my phone and put them on the calendar and decide what "help" was needed (ride, visit, meal, etc). After I transferred 2 -3 months of appointments for both Mom and myself, I could finally see "how bad things are" and how much stuff needs to get done (not including all the food, medicine, laundry, drinks, dressing help, and more part of every day). I was pretty depressed and had to spend 24 hours doing the minimal care I could while I napped between chores. Didn't change out of my nightgown. It didn't help that it snowed all day (again!) but I was really in a funk. That was Saturday. Sunday the sun came out (YAY! SUN) and some of the fog lifted in my brain...

But my arthritis has now flared up so that all my joints are aching...Yes there is a mind body connection - at least for me. When my mind is too upset or stressed, my body tends to find ways to remind me to take care of me too.

So I set up all of my own meds to make sure they get taken as needed. And called my doctor for a change...baby steps :)
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I booked my flights using bro's miles. Turned in my request for vacation. Text the dates to my friend to cover for me with regards to cover caregiving dad. She just realized that I will be gone for 2 weeks. She cannot be away from her boyfriend that long. They both don't have a job. Only 1 car between them (his car).

I've told her that I've been brainstorming on this. The important part is to just change his pampers in the morning and evening, and the weekend. It seems this may not work for her either. Now I'm getting depress again. Friend is the only one who has changed my dad's pampers. She's done this before, when I went off island. But she was single then. Now, she has a boyfriend. Almost midnight and too tired to think.

I know that nieces will not change their grandpa's pampers. So, I won't ask. They have toddlers, so I cannot ask them to spend the nights here. I can ask my nephew's girlfriend to spend the nights but she won't want to give up her weekends. Plus with her, I will have to pay her. Pay friend. And then find someone to do the weekends - with pay. My nieces can do the weekends - day time.

So, $200 for the 2 weekends. $200 for friend to change his pampers. $200 for spending the night person. $600.00? Since this is for dad's care, he will just have to pay for it. Still not perfect.
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Well Book you are going and that is the end of the story. Start looking forwad to it and find a little money for some nice new outfits. Call the public health people who send Dad's aides and tell them the situation. I know he will refuse but they can put him in respite for two weeks. Tell eldest bro it is his responsibility to take care of Dad's needs. As long as eldest sis is in the house you don't need anyone else. I know she wont do anything but I assume she is capable of calling 911. This is not your responsibility
Tell dad the situation and tell him if he wants to stay home he will be paying the bills. You don't have the money. Can your friend drive your car? take some deep breaths and think vacation. Lots of hugs
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I woke up this morning in a panic. I'm already dreading the long 13 hour flight from Tokyo to Chicago-both ways. Flying on a 7 1/2 hour flight to Hawaii is one thing, flying up and then landing several times for about 24 hours is going to be terrible. Gosh, does air pressure cause a nose bleed? Neck and headaches. Yes, my nose is still bleeding slightly daily, still getting the back/neck/headaches. Now that I've got the ticket and requested for leave, reality is hitting me. And my fears are coming to the fore.

I'be been waking up with my right face stuffed and right ear ringing loudly Doctor wants me to exhaust all avenues before referring me to the ENT. I've bought more decongestants and allergy pills to try to handle this. I Can't neti pot because everywhere I read said not to do it if you're bleeding. That's been months ago. Time to get up.
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Book does your insurance require a referal before seeing an ENT? I think you should insist on it before you travel. it sounds as though you need some heavy duty prescription stuff before flying maybe even a steroid if you can tolerate.
Do you have one of those half round pillows to go round your neck? if not a small roll soft pillow to go behind your neck to keep the pressure off. Many planes also have "wings that pull forward at the sides of the headrest which gives more support. No many people seem to know about them or use them but it will probably help you. they would have to carry me off a long flight like that so make sure you get up and walk around every few hours and tense your legs when sitting to keep the circulation going. Stop panicing everything will be fine and you will have a good time. Hugs
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Book,

I read what you posted about how you pay your sister to live there with you and your dad, and on top of everything......you pay her. It's unbelievable, that you can't count on her in your absence. Why should you have to pay extra help when she lives there? O.K., I'm aware I haven't even asked you whether she does the pampers, either. Aside from that, you'd think you could also ask your brother, for all that you already do. O.K., please don't fret about the flight, and your sinuses.
Everything will be fine. Maybe you need to look up some deep breathing exercises. Believe it or not, they also could help your conditions, and relaxing overall.

Much Love & Light! Margeaux
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Aaaaaaaaaaaaaaaaaaaaaaaaargh Today is not going to be a good day. I went into Mum about 5 this morning all was OK by 8 this morning the whole room smelt of pooh - really badly of poo so clearly I had managed to get the pending impaction under control, but the smell was far stronger than anything i had smelt before. Oh glad youre here says Mum....like I had been anywhere! Wassup says I as I attend to the commode. Just hang on a sec let me empty this. So I emptied the commode came down and there was that pungent stench again.
Mum is now sat on the bed apparently dusting the knobs on her bed post....with a soiled wet wipe. What are you doing honey says I gently. I have dusted and polished all the surfaces I could get to but they dont seem to shine with this polish. OMG almost every visible surface she could reach has poo on it. Two hours later I can still smell it having used every disinfectant I can find. The glass and metal were easyish but the wood....anyone got any suggestions for that I have tried everything I can think of.
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Zoflora, Jude. You can mix a teaspoon or so of it into a wood soap solution and see if that helps? Or Neutradol used to work (ish) on dog mishaps. And open the windows. I feel for you. Following the poo trail round the house and weeping silently is a painful memory from the days when mother was mobile...
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Geez! And what about using a toothbrush with the wood soap, the old army way. Jude, I hope the day becomes much easier for you. Am glad you were able to stop the obstruction, I deal with that here too. Old scar tissue from an illectomy many moons ago. My mom is not a candidate for any sort of surgery, keeping her healthy is the main goal.
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Just found a website that said white vinegar mixed equally with water will work. The vinegar smell will dissipate in a day or two. Better vinegar than the other.
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I had 2 appointments with my doc this week - yearly physical and my sinus. Took weeks to get it. The clinic called me last week to cancel it - she went on emergency leave. Yes, referral is required to see the ENT.

When I fly, I spent most of the 7.5 hrs to Hawaii and the 8hr flight to Houston- mostly walking. I think I have poor circulation. Once the plane reached a certain altitude, my legs started hurting. The longer I sat, the more painful my legs became. While everyone was sleeping, I was walking constantly. So my last trip to Hawaii, I hydrated myself with lots of water before and during the flight. (I googled the info).

On both trips, I must use my neck brace while sitting. It's the foam brace. Even with that, for my neck to be angled off/tilted slightly , I get severe neck pain which then travels to the head. I ordered an inflatable sleeper brace and inflatable wedge pillow several years ago.

I will definitely need the wedge to sleep since my reflux/gerd is acting up. It's improving since I drastically cut eating spicy, hot, oily food. I've also struggled on cutting back the midnight snacks.

Thank you for the input. I Will drop by the clinic and make several appointment. Later. It's past midnight.
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Book can you find the support stockings to wear? Should be at most chain drug stores. Wear shoes you can slip on vs tieing. I do not know when you leave but you could think about taking a baby aspirin to help.
Jude maybe you could stop at a pet store and get a black light and use when room is dark to locate any areas not cleaned as well as some of the cleaners used for pet stains?
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Thanks guys and gals I used the zoflora - forgot about that, Could still smell it a bit and used a toothbrush (was so tempted to use her toothbrush BUT I DIDNT). Then I used vinegar and some bicarb in water to rinse off the vinegar then more zoflora, then finally some almond wood wash and then just to be sure some lavender polish....and what did she say? I just did that this morning ....mmmm yes I know Mum I just thought I would give it a nice lavender smell seeing as it is spring....oh thats a good idea can I help - erm yes ok let me get the stuff for you.....!
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Wow twin never thought of a black light in fact not being a pet owner I didnt know they existed - now have one ordered from amazon thank you Twin mwaaaah xxxx
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Jude - I was reading the kindle this morning when I read your comment and poop. I was .. I read the part of you, that despite all that grossness, you were still very kind to your mom. Oy! I guess I can strive to do that, too, when dad .. sticks his hand in his pamper and makes a mess. Good thing I don't believe in gambling. I would be losing repeatedly on that goal.

Googling sinus and flying.... I found that I will need Ear Planes (ear plugs that helps our inner ear maintain balance while flying.) Only bad thing about it is that it's best to keep it on the whole flight - 13 hours! I can barely hear the intercom without ear plugs, I'll be totally deaf with that one on.

I've started a list on stuff to check at the pharmacy: Ear planes, Sudafed (except last time I took it, 1 pill caused my lips to break out with tiny rashes. The next night, 1 pill, and woke up with rashes on lips and my eyes had some swelling.) I will check the pharmacist on alternate drug, test it now before my flight. Support Stocking.

And my boss still have Not approved my leave....
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Im trying to get up before MOM ( with intent of trying to do some AM home exercise... cause Im so out of shape from just t staying home not much motivation either for just a 15 min walk ....... but it never fails.. She gets up and then Its getting her out of bed to commode..to wheel chair.. all lifting her .., make breakfast etc.. af that I don't feel like it.. So Now.. its on to the overwhelmed feeling again.
I have to much paper work to concentrate on.. getting her state/fed assistance.. getting her taxes together.(which all has to be done like yesterday).. then she calls me.. I have push it all aside,, then its a mess..
daughter is coming home from college tomite for Easter.. The house is mess, I want to clean her room. fresh sheets etc..... ... Not one thing in the house looks like easter except for some tulips that I broke down and bought.. I am going to be all over this place with no direction. Worried about Sunday cause its just the 3 of us.. and Mom doesn't eat the things I make..( or I have to comeup with something that I can turn into what she can... and my daughter gets very depressed seeing her grandmother failing.... so I know she will retreat to her room..
I just want to go back to bed...... even though its not the most comfortable little ol bed... ( thankful I have one) but I don't sleep well... cant afford to buy a new one..Almost ready to use moms credit card to buy one.... Maybe I can use it for a medical expense... like medical care for the care taker to be a better one??LOL
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PS ,, and pay her bills.which Im having trouble concentrating on..... and I am out of $$ to pay mine...Im lucky I have internet to be able to vent here... LOL !!!!!!!!!!!!
I really need a vacation.... you all think ?????
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booklover, dear, I do hope your Pharmacist has told you that Sudafed is out for you now, and not only that, the chemical is Pseudoephedrine HCI 120 mg in Sudafed may be in other meds as well, which you should not be on ever again.... Also he should have told you that your body will increase this medical allergy this way.......If you now not take any such chemical for week -years, and then end up taking just one dose with that chemical... your body will react so much more badly to it, just head right to the ER -- by the time you get there you will be in the start of anaphylatic shock sydrome.... I had to find that out the hard way... no one told me about the time-delayed reaction !... in fact I had to find it out 3 different times with 3 different chemicals... and I am now allergic to 12 different meds. That happens the older one gets, as the immune system gets weaker, we over-react to more stuff... Be well,,, and safe !!!
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Look I know, she is beating me down little by little. The strange thing with her disease is that she is in optimal health. She walks, eats anything. Her body is healthy but her mind is gone. She is only 67,to young, The one thing is that she sleeps all night, and I can get some rest
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Sanity I dont see any reason at all for you NOT to use your mums card to buy yourself a comfortable bed. If you were a paid carer your Mum would have had to have purchased a comfortable bed for her/him to sleep on - that would have been a reaosnable expense...why would you think you are worth less than an outsider? In your position and given the hours carers can be called on to work I think that is the least your Mum can do for you - providing you have the legal entitlement to do that of course i.e. POA. If someone else is then suggest it to them well not suggest tell them - if your health fails as a result of poor sleep (and it will) who is going to pay for your mums care? Isnt a bed a cheap option and a very small one in the grand scheme of things. I can see from, your comments on tax returns that you probably already have POA - use it woman and put it down to providing reasonable accommodation for an unpaid carer for heavens sake - surely they will allow this?
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bookluvr, ask your druggist about Dramamine or Benadryl. They might help with your sinsus, and both are excellent to use if one tends to have motion sickness in cars, planes, trains, boats. With Benadryl, it is not recommended to use long term.

As for Sudafed, I had a bad reaction on the third day of using said product decades ago. Doctor told me to stay away from any meds that had "fed" at the end of its name.
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Sanity, I'm glad that despite your daughter not liking to see her grandmother failing's health, that she still comes home to spend Easter with you. Please do your best to just enjoy it. One day, as your mom continues to worsen, your daughter might decide it's better to spend her holiday else where. I'm fortunate that my favorite nieces grew up with elderly illnesses (my mom was diagnosed early with dementia - when she was age 52 and I was about age 23.) So, these nieces were used to scary grandma (in her violent stage), to bedridden grandma... as teens, they were helping me with mom - holding her while I changed her pamper, to them suctioning her trache. Because they've known this kind of environment, they have no problem at all coming here every holidays to celebrate it with us, and also in their mom's home. BUT, I have other nieces/nephews who avoid this house like the plague. I just hope your daughter will not be like them.

As for a new bed, when it was just me and my 2 bedridden parents in the livingroom in their hospital beds, I had to buy a sofabed. The cheapest possible - except the cheapest was also the hardest mattress. I had to buy one up higher which had a softer mattress. It was still hard to sleep on for several hours. I went to Kmart and bought those mattress foam. It was about $26.00 each. One is on top of the sofabed, under the twin size bedsheet. And when it's time to sleep, I bring out the 2nd mattress foam, set it on top of the sofa bed, with another twin sheet over that. It helps a lot to have 2 of those foams. If I sleep all night on one side, I do wake up with my hip hurting.

Another option, here on island, is to buy a Futon Mattress. If you can't find it in your local store, try the Asian stores. Only problem with this is - getting up and down the floor. These can get very expensive. Usually we buy it when it goes on sale.
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Richie - yes, your mom's too young. And you have a long road ahead. My mom - if my dad had not disregarded the DNR - would have passed away at age 70. But with the oxygen, trache, and stomach tube, vegetative state mom lasted another 13 years bedridden. She became bedridden at age 66 - due to a stroke. She was very healthy and active. Her stroke came from sundowning. She was violent at that time. She would walk, walk, walk - for hours outside under the sun. At nights, she was walking, walking, walking. Dad had put locks all over the doors so that she couldn't get out. One day, she was walking for hours under the hot afternoon sun, the next morning, she was bedridden. Heatstroke - most likely.

Just come and vent. Check around the other threads/discussions to see if anyone is going through the same thing. Just be careful. People tend to be quite critical sometimes - on this thread. Tempers fly. All that stress, etc...
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DHiL - you hit it right!! I always wondered why I was able to take these pills - only once at night for maybe 2 or 3nights only. And then get these reactions - that seem to get closer and closer to when i was taking it. Example, I took Sudafed, and one week later - a reaction. Months go by, I take 1 Sudafed tonight, and another 1 the next night, and had a reaction - 3days later. Then the following year, I took 1 Sudafed, the next night another Sudafed, and woke up will my eyes swollen. THAT was when I stopped taking Sudafed.

I can No longer take Comtrex. And.. Last year - Benadryl - I'm Beginning to get rashes on the lips. When I saw that, I stopped taking it. I bought the generic brand at Kmart. So far, no reaction to it. I only take it when I have an allergic reaction to food - like MSG, etc.

I so agree with you. I'm finding out more and more medicines, food - I'm becoming allergic to. I seriously need to see if my doctor is willing to give me an epi pen. Thank you for the heads up. I don't want to go to the ER. I might not come out the way I came in.

I'm going to have to bring all my meds to the pharmacy. I don't know anymore which to take. I'm too scared to start on my depression pills because I really need my headache Rx which has helped me tremendously! I can't believe all these years, I've been popping Tylenol, Excedrin Migraines and Motrin just to dull the headache to a pain level 5. This Rx from the neurologist - 1 pill - dulls both my back, neck and head pain down to a 2!!! He was happy that I was happy with that. If most of the meds conflict with this headache pill, I will need to ask him for another one.

FreqFlyer, thanks for those tips too! Especially the '-fed' part. I've copied both yours and DHil's comments on this - under my "Allergy" file.

I've put on both the Kindle and the iPad a list of my allergies. It keeps growing. Chamomile tea, St John's Wort, MSG, etc...
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