My Sanity Needed Vents

[widow'15]

Gwen:  Am so sorry to read this.  There are no words I can find to help ease your pain.  Just know I am only having positive thoughts you will be able to continue living in your home with someone checking on you.  A big hug for you.  Dee

[kayc]

11 hours ago, Gwenivere said:

I was told today when I get released I will have to have someone come in a few times a week.  If I don’t transition well to living alone again my only option is moving to an assisted living facility.

I can only imagine how hard it was for you to hear this.  I know you value your independence, as we all do.  I pray the "someone" that comes in will be someone you can tolerate and perhaps even like.  I hope so.  You will transition to living alone again.  You have no option, you'll do it, you'll do it for you and your girls.  We're all in your corner, rooting loudly!  We love you, Gwen.

[Gwenivere]

That’s the most depressing part, Kay.  If I can’t make it at home, I’ll lose my dogs.  Don’t even want to think about living in a tiny apartment in a cottage with my mealtimes and food choices dictated, and I really hate someone dispensing my meds.  Today they were an hour late throwing the whole day, the worst off it’s ever trying to get in a shower, lunch and PT.  Couldn’t buy much food with a community refrigerator.  I was discussing this with my roommate as she faces the same.  Was independent at home and has no idea if she will be able to handle it.  

The truly ironic thing is I am developing a Stockholm Syndrome.  As much as I want to get home and many of these people drive me crazy, it’s human interaction.  What a weird thing it will be going back to the quiet.  I won’t miss the medical talk, but some of the day to day chitchat I will as I don’t know when I will be able to venture out by myself.  I’ve gotten so brainwashed to this type of living I’m almost afraid to go home which just shows how drastic changes mess wih your head.  My fantasy is to wake up and none of this ever happened.  Just wake up to my usual limitations.  It doesn’t help that I don’t really feel any better.  I’m already thinking ahead of how I will be transported needing oxygen, maneuvering the dogs, how to unpack, etc. Now with the seed planted if I don’t I will lose my independence totally.  Arg.  64 isn’t young, but feels too soon for this just as 59 was to lose Steve.  

Thanks for everyone’s input.  ❤️

[kayc]

I watched a show on Dr. Phil yesterday and they had someone featured on their show that was helped by someone who did that for a living and they were very helpful, took her out as well as doing things for her, allowing her to stay in her home.  I wish I could remember the name of the company she worked for, but alas my brain eludes me.

 

[Gwenivere]

You have a brain, Kay?  Just kidding as I seem to have misplaced mine in this mess. 😳

We had plans to sing the Beatles song for the 64th to each other.  

[KarenK]

Gwen,

I have not chimed in because I am just stunned(as you are) at this turn of events. I know what Kay is referring to, but cannot remember the name either. I have seen commercials for it. Perhaps your local Area Agency On Aging can be of help. They are supposed to help people stay in their homes with assistance. Are you working with a social worker? There has to someone out there to help you. Do not give up hope.

Love ya, girl!

[Kieron]

Gwen, it's probably the state I live in but we have services like this all over the place.  We have a very extensive care network in Minnesota and everything you describe wanting/needing and what Karen mentions (the council on aging,  senior services, etc.) is all available here.  Of course you have to qualify for it, and it's not free (co-pays and such charges), but it's there and I know exactly how to start going about getting it.  It's gotten much harder to access in recent years, due to many people flocking here for help, but at the same time, it's so disappointing when I hear about other regions that simply do not have the infrastructure in place to do things that we kind of take for granted here.

[kayc]

I read it's covered under Medicare but of course you have to qualify, which you would since they're ordering it. I'm sure your area has a lot of resources available, you're in a large city, not out in the sticks like me.  I looked on the Dr. Phil site for recent shows since it was just Friday but didn't see a listing of what's just aired.  It was at the end of another show but can't remember what.

Never mind, I just remembered, you're not yet 65, well it'll be covered for you soon!  And the good part about Medicare is they write a lot off so the copays are more manageable.

 

[Gwenivere]

There’s a lot of places that offer in home care.  I’m just so worn out dealing with people and I’d have a limited list, I’m sure, thru my insurance.  All rate themselves great, but how do you really know?  This will be letting someone into my home.  Have to take that into consideration. A conversation for the social worker.  

This week I need to address how the physical therapy is causing me more pain combined with this gawd awful bed.  My stamina is better, I think.  It’s hard to judge in this setting.  Especially getting less sleep.  I didn’t wake in this much pain at home.  I wasn’t doing bikes and machines there tho.  I just don’t get how they will determine I’m ready to go.  

I’m hoping I won’t be facing this at 65.  November isn’t soon.  I’m so sick of trying to coordinate this crap and not having a clue what things will cost.  I have my financial advisor on alert.  I’ve already been thru thousands on the dogs.  Worth every penny, but always a reminder of Steve being gone.  Just like getting this in home person.  It’s a tornado of frustration and anger.  Trying not to feel defeated but it’s tough.  

[iPraiseHim]

5 hours ago, Gwenivere said:

There’s a lot of places that offer in home care.  I’m just so worn out dealing with people and I’d have a limited list, I’m sure, thru my insurance.  All rate themselves great, but how do you really know?  This will be letting someone into my home.  Have to take that into consideration. A conversation for the social worker.  

This week I need to address how the physical therapy is causing me more pain combined with this gawd awful bed.  My stamina is better, I think.  It’s hard to judge in this setting.  Especially getting less sleep.  I didn’t wake in this much pain at home.  I wasn’t doing bikes and machines there tho.  I just don’t get how they will determine I’m ready to go.  

I’m hoping I won’t be facing this at 65.  November isn’t soon.  I’m so sick of trying to coordinate this crap and not having a clue what things will cost.  I have my financial advisor on alert.  I’ve already been thru thousands on the dogs.  Worth every penny, but always a reminder of Steve being gone.  Just like getting this in home person.  It’s a tornado of frustration and anger.  Trying not to feel defeated but it’s tough.  

You have a lot to deal with it.  I would think that you would prefer to be at home than in an assistance facility. I would ask your financial advisor to help with the process of determining the best in-home care services to work with your budget.  If the first one you chose doesn't work out then move on to the next one.  It seems you would have more control and there is always hope that your health will improve.  Plus you will be home with your beloved pets.... praying for your healing and recovery. - Shalom (Peace)

[kayc]

I echo what George has said here.  I don't know that financial advisers cover such things, but a caseworker or senior services might be a place to inquire about these companies.  I understand it's different having someone come into your space, like you're feeling invaded, it's a different set of things to deal with than being in rehab, in which you feel all your control is gone.  Being home with your pets, your own bed, and choices are something at least. 

Also keeping you in prayer.

[Gwenivere]

I swear, I couldn’t make this up if I tried.  I was feeling bad yesterday so this morning after an X-ray ruled out pneumonia last night they tested me for the flu and I have it!  Had to be moved to a single room losing my roommate I had gotten to reallyI can’t leave the room. Doubt I will get any PT.  All the work I did last week will be imperiled.  Can’t even walk the halls with a mask so I get some exercise.  How did I get so lucky?  This wasn’t hell enough as it was?  I haven’t been home for 26 days now.  Haven’t had any contact without gloves.  I’d give anything to be back in my old room griping with my roomie.  We even laughed too.  I at least felt part of the world.  I had forgotten how nice it was to have someone respond to things I said.  Made the time go a little faster.  Worst thing still is my lost time with Ally.  I miss the rap scallion too.  I’m perfecting the go to sleep expecting the worst in the morning to avoid more disappointment.  That way if something goes well it is a welcome surprise.  It’s the only way to survive this.

Did hear the flu that is breaking out isn’t the main one they were expecting but the B strain in the vaccination.   Not the norm.

Keep your Purell handy!

[kayc]

The thing is, you got it there.  Contamination from someone, likely sick and breathing on you...a worker?  I'm so sorry you're going through this, just when you thought it couldn't get any worse. 

I hope you get better soon!  

Bad news for me this morning...more snow starting this weekend.

[widow'15]

Gwen:  Yes, try to sleep, sleep, sleep -- so sorry to read this.   Like kayc said, it could have been a worker, anyone there.  Do get better so you can continue with your therapy and return home to your kids.  Dee

[Gwenivere]

I definitely got the flu from someone here.  Haven’t heard of any others on my floor with it. One person was isolated for C Diff.  Couldn’t have a shower today.  Never had a bed bath before but they are not even close to the real thing and couldn’t do my hair.  Doesn’t help when you’re feeling icky as it is.  Supposed to be getting an air mattress as these beds are doing me in night after night.  I can’t really tell if it’s the flu or that I just in general feel like crap from pneumonia recovery.  Probably both.  Add in the uncertainty of how much longer this will be drawn out.  Just asked....I’m the only one with flu.  Not that I want anyone else sick, but how does that happen?  And of course, the whiney 'why me'?  Heard my dogs are doing well.  That my shy withdrawn one is getting more social with all changes.  This is good but makes me very sad.  Like they are doing better without me.  It hurts.  

I did fall asleep yesterday afternoon, but you know how you wake up disoriented and hot and out of it?  There’s just noupside to this in any way.

I stare out the window at the endless rain.  It’s a reflection of what’s in my heart.  

[MartyT]

[kayc]

Gwen, your dogs are certainly not better off without you.  That was kind of what I felt when I left Kodie with my neighbor right after I got him and he walked on the leash with her and did his business outside, something I hadn't had luck with yet.  She's a dog trainer so of course it makes sense.  But I know no one can provide the love and care I do for him and I know that's true for you and your dogs as well.  When we're sick we feel the worst about everything, we're bound to, our health affects our outlook, our mood.

Have they tested you for the flu so they know what strain?  I've heard B is worse but I don't know.  Just keep praying for you, this has to turn around sometime!  You've had the worst run of luck.  I wish I lived nearby.

Heading to my son's with Kodie, they want me to watch the kids tomorrow, so when I get home it will be to a cold house, I'll have to clean out the wood stove, do a burn pile, build a fire, walk Kodie, and carry everything into the house, some of which I'll have to do in the dark.  I always hate the coming back part of trips, it's exhausting and especially after the long drive!

[Gwenivere]

I don’t think the nose swabs say which flu, just positive or negative.  I definitely don’t feel right.  The tamiflu is messing me up too. I got an air mattress today but not sure it will help.  I has a box on it to adjust to whenever I get up or down and on its own. So more noise, Hope I can sleep. I plan on raising hell if I can’t get a real shower Saturday as it will make a week.  Got no therapy and little contact about what the plans are.  This is getting insane.  Sunday will make 4 weeks I have been away.  

I'd like to feel my kids do better with me.  You’re right, I haven’t the clear mind to deal with the emotions this is causing.  Had read they are doing well and my youngest is getting more social.  Guess cause I’m not there for our usual routines.  I have to keep in mind they are only getting company 3 limited times a day, not all the hours we had together.  Got up, bored, slept, whatever together.  It seems a lifetime ago I got up, fed them, walked the yard to clean up, opened the gate and checked the mail.  Sat at my dinner table for meals.  Hung out as a pack at all times I was home.  I think over all the little things we did all day.  I just feel I’ll nevr get to go back to what was my normal life.  Really hate this 2 hour earlier than what I was used to at home.  Not having access to my things and sitting in the living room at night rather than this all day in bed.  I don’t bother to change out of hospital gowns since I can’t go anywhere.   

 Coming home at the end of the day was getting settled in too, Kay, but nothing like what you have to do.  You amaze me what you adapt to in that rural setting. At least my heat was on and I’d have left lights on.  And such long drives?  Wow!

[kayc]

You know, a lot of people don't understand just how much our pets mean to us, they are our family!  And all the more so when we have lost our partner, we are alone without our pets, we have rituals together, a life.  Losing Arlie is the hardest thing I've been through since losing George.  It beats being conned and having to go through divorce, it beats financial uncertainty with loss of jobs, it beats everything I've gone through.  It broke me.  And then on top of it I lose Kitty? I never would have dreamed several months ago that they'd both be gone.  

I've gotten very attached to Kodie, going through the horrible immunizations reaction Monday was a day I hope never to repeat.  He couldn't sit, lay, be picked up or touched, couldn't eat or drink, my heart just broke for him.  I couldn't kennel him that way so we slept together and he was good as gold.  I'm at my son's now and Kodie hasn't chewed on anything but his toys.  So proud of him!  No one replaces Arlie, never, but at least this little guy has wormed his way into my heart and we're in a routine now.

They should be able to tell if it's flu A or B but maybe didn't do that kind of test.  There's three different kinds of tests so they probably did the simplest.

I imagine when you get home, your kids will be beyond excited to see you!

[Margm]

I'm sorry Gwen.  Had some dealings with nursing home and rehab.  My B-I-L got out of the nursing home by giving them his life insurance policy.  Lots of money for a two month stay.  Settled in a government assisted apartment, met his true love, at the end of two years, said it was the happiest two years of his life.  The man knew how to make lemonade from those lemons.  His wife of two years had beginning dementia and he had Parkinson's.  Billy was with him when he just went to sleep.  He was happy at last.  He was my hero.  My sister walked in on my mom in rehab, her Alzheimer's was advanced, but they were treating shoulder injuries.  She was laying on the floor, in her own excrement, huge aide standing over her (she had fell out of wheelchair) and he was berating her.  My mind has been so slow since Billy left, since my sickness.  The old me would have taken pictures and taken them to court.  My family never sued anyone.  I am really  a quiet person, until my fingers hit the keys.  But I do have redheaded roots and a temper to match, slow to anger.  Crazy when I am angry.  I did get people seen faster at the local hospital.  Went straight to head administrator when my mom waited five hours and still was not seen.  You are seen instantly now.  Billy's leaving took all the wind out of my sails. So many things done wrong, so many things I needed to report.  I retired from that hospital, I could have gone straight to the person who could have helped.  (Helped other patients) I don't have the fight anymore.  Gwen, you've got youth and knowledge about how these things run.  Doesn't help much when you feel powerless though.  My best wishes for your moxie.  There seems fight in you yet and I think you will find it.  I hope you will.  Sometimes I do good but last night woke up hurting all over, hard to move anything that did not hurt.  My sister and granddaughter says they have come a long way medically in six years, but I understand they do not have anything to work with.  I was sweating like sweating off a fever.  Lower back hurts constantly but radiation has honeycombed my bones.  Eventually the cure will take me, but I cannot lay on that examining table like a side of beef without any sheet to cover me.  That's not living.  Until then I will sleep (sure like to do  that), and get up.  Some morning I think I cannot get up, but I cannot depend on my granddaughter. (Will not saddle her with that responsibility). I will survive and move till I can't.  Beating cancer gave me so many years, but the cure sure made my late years miserable.  Not in a wheelchair yet, don't use a walker yet.  Some days the footsteps behind me are louder when you reach my age.  You are such a fighter though, you've come through so much, and you are not a person to just give up.  A lot of life in you still my girl, I think you can fight the establishment (and your ailments)  if anyone can.  

[Gwenivere]

Thanks, Marg.  I do hope you are right.  I’ve been so darned frustrated in this flu isolation.  They scheduled therapy every day and no one showed up until today and did nothing.  I was sitting in a chair and took it out on him (he was handy) as the social worker never showed up that I had called hours before.  She said she’d be here in 30 minutes.  I’m sure she’s gone for the weekend.  A package I ordered is floating around and no one bothered to bring it. I want a frigging shower tomorrow as it will be a week.  I’m in more pain from doing nothing.  They surely have ways to work around this stuff.  I don’t know if I’m still contagious, but if I am, who am I going to infect in a shower?   At the hospital they let me take walks even tho I was in isolation.   My old roomie got another person, so she and I can’t be back together.   Meals keep coming with something wrong.  About the only thing to look forward to when you’re 'locked up'.  The flu meds they give me make me feel awful.  I’m usually a passive/aggressive combatant, but I want to scream at someone!  I wish getting angry got me somewhere, but it doesn’t.  They still have the power.  

Don’t even mention assisted living!   Might as well put a gun to my head.  I don’t even want to go there mentally right now.  That would mean I can’t live alone and I’ve had no prep for that possibility.  I thought they’d cure the pneumonia and I still had a few years left.  I hope that is true.

Now everything seems alien to me.  The thought of driving, walking in a store, getting my mail.  A month is a lot longer time than I realized.  I’ve been pacing the room to be up and doing exercises with an arm band.  Got a new mattress and it’s still bad here.  The hospital had good beds.  I really feel I was doing better before I got here.  I needed a walker but I was improving fast and I would have never got the flu!   This will be my 3rd weekend here.  Only good thing is the Breaking Bad marathon Sunday.  

Thanks for letting me prattle on.  Hopefully someday this will be a long forgotten topic.  Dreams cost nothing.  

[widow'15]

Gwen:  Dang, sounds like there is a shortage of caretakers in your rehab community, or totally mismanaged.    At least you must be feeling better if you have the energy to pace and work with an arm band.  Don't let them forget about you in isolation.  Keep prattling - Hugs, Dee

 

[kayc]

10 hours ago, Gwenivere said:

I don’t know if I’m still contagious, but if I am, who am I going to infect in a shower?

IDK, but it seems to me they can get off their duff and disinfect it!  I'm so spitting mad from them not doing their job!  My sister's rehab was way better.  And if we created a stink about something, they listened and hopped to!  What kind of a place bills the kind of money they do and does so little!  I'm angry because they should be taking care of you, including showers and therapy, what the hell do they think you're there for?!  You'd get just about as much help in a hotel room with ordering takeout!  I'm so sorry, I just want this all to be over with so you can go home.  I only spent one night at my son's and it was enough, I was SO GLAD to be HOME!  I can't imagine being gone this long.

Yes, as Dee said, keeping prattling.  Marg is right, you're a fighter, keep fighting.  We love and care about you!  I'm a fighter too, always attributed it to being a preemie, had to fight for my life!  If you were in better shape in the hospital, sounds like a call is in order to your doctor, maybe he'd shape things up around there!

[Kieron]

I hear about this kind of thing all the time at work.  Infuriating.  I have clients who are supposed to get personal care attendant services or other support workers who will take them places they need such as grocery shopping.  These workers are *supposedly* to help them live at home independently and many times, the worker doesn't show or does the bare minimum, or has a bad attitude and doesn't return the next shift.  Or the visiting social workers say they will visit but then don't keep their promise.  It's too easy to blow people off.  Agencies can't keep employees, don't pay them enough, or otherwise could care less.  it's an epidemic and it's disgraceful.   One day those no-good no-shows will be in the same situation and wonder why no one is helping them.

[Gwenivere]

No luck fighting the machine today.  Got to 'wash down', but no shower.  I made it loudly clear I wanted an exception on bath days to Monday when I am done with the flu meds.  Both OT and PT sessions happened.  Always depressing listening to recommendations for ramps, lots of in home help, the possibility of going to assisted living, etc.  Heard there is another fire to stomp out at home, the back sliding door lock is broken.  Nothing I can do from here.  That’s a wait for the repair person to show up thing.  Another 'where the hell are you, Steve?' situation.  They want me to think about a discharge date.  Sounds good, right?  Well, it’s more complicated as always.  I was advised by one therapist to make sure they arrange for in home care because if they don’t, I’ll have to do it. Have to find out the state of my house.  Hoping my side of the bed is untouched.  Where I sit in the living room is the same.  I won’t be able to call for anything.  Food will be a major endeavor for a while.  I’ll be on my own in a very compromised physical condition.  There is a safety here that there are people around.  I could be overthinking it, but I’ve never been in this situation before.  I’m almost afraid to go there.  It’s really hitting me with big time fear.  It’s not like I can waltz in and pick up where I left off.  I’m planing on a cab to get there as they will unload my stuff that I’ve tried to keep minimal.  Taking all my snacks for ease of quick fuel. I’m a novice at this just like the past months fight.  Get used to something and it changes.  I so wish Steve was home.  Come and get me.  Have sorted thru the mail, all the little things that I’ll have to tackle bit by bit.  

This is a very long way to say now I’m afraid of going back.  Truly stuck between worlds, none are ones I knew.  What if it’s gone?  I wish I was going home to the one I wish I never left, if that makes sense.  There’s just no simple way out without our partners.  I’m already depleted by this and now will face more stress.  Won’t have the excuse of nothing to do as I did here.  Can I sit in my living room as opposed to a bed all day as I won’t be making trips out yet?  Can I take my worst fear of being homebound?  I have no choice as always.  Will I do something stupid like push things and get hurt or stuck?  Will I break down and lose it?  Take naps to escape which would really depress me?  Brain is reeling today.  Reading this I see I’m wound way too tight.  To top things off, my ice cream disappeared and like prisoners do,  it was the one little thing I was looking forward to all day.  

Not feeling like a fighter today, Marg.  😢