If You're Going Through Hell

[Widow2015]

11 hours ago, kayc said:

I hate dementia and what it does, it rates in there with cancer as far as I'm concerned, but dementia is very hard on the caregiver...

kayc:  It is so sad that you once again have to lose another loved one to this horrendous illness.  As I watched my mother fade into a different person over a period of years I will never forget the look in her eyes.  This beautiful sweet, caring little dignified Southern Lady developed into a totally confused, lost and frightened human.  It's a strong concern I hope I will never have to have my children go through.  My Mother would show her anger towards some hospital staff, but hardly ever showed any anger towards us unless during the "sundowning" time of day, her mood would change.  Each person develops differently in this illness evidently.  

I am happy to read your BP has returned to a more manageable reading. You are the kind of sister I wished I could have had.  Hugs, Dee

[Gwenivere]

2 hours ago, Marg M said:

For some reason, something has happened to my heart/mind, and I do not answer anything anymore.  I don't feel responsible enough to help anyone.  I want to help myself, but for some reason, I seem to have lost my way for that too.  Cannot explain.  

Marg, I don’t know if something happened or this feeling has taken you over on it’s own.  I can empathize, whatever the reason.  Coincidentally I hit this wall today as well.  It’s a very strange feeling.  An emptiness.  Flatlined.  
 

I may be reading more into your words.  If I’m not, you’re not alone, tho I know you may not care about that.  I find it hard to fully appreciate all the support everyone has given.   It makes me feel bad about myself.  I just trust everyone knows how much I do care about them and all they’ve done and continue to do for me.  
 

You’re  stuck with everyone caring about you.  ❤️

[Margm]

I don't know Gwen, maybe it is living alone.  I get the strange feeling with my back to the rest of the apartment that someone is with me.  Then that feeling goes away.  Perhaps this is some stage I've never had to face.  I think my biggest problem is "fear." I have deep compassion for you all enduring pain.  I do have that box with my fan on it that says "random crap" and yet I won't open it.  My kid's health worries me.  Somehow I think it is the chronic depression and I feel so insignificant.  I wrote a lot, deleted it.  It is like that big plastic box with "random crap" written on the top.  I have to open up.  I will.  My, probably best friend, was just diagnosed with cancer of her salivary glands and spread and the doc scheduled her surgery for October ??.  She told her "who said I was going to have surgery?"  The doc left aggravated.  She asked me if I was afraid to die.  I think I am more afraid of fear.  Another classmate put in hospice.  He put himself there.  I will gather myself together, I hope, and try to write what I feel.  I had written a true "word salad" and that is really a mental description.  

[Widow2015]

3 hours ago, Gwenivere said:

It makes me feel bad about myself.  I just trust everyone knows how much I do care about them and all they’ve done and continue to do for me.  

You’re  stuck with everyone caring about you.  ❤️

Gwen and Marg:  Yes, you are both stuck with everyone caring about you.  Each time I sign in to the Forum I love to see how much everyone cares for each other with a comment or a suggestion. 

Marg, I hope the "lost way" you're experiencing right now will change for you.  I understand being one of the eldest, how changes in our life can make us feel.  These past couple of weeks I've learned of at least 6 serious health changes in friends or family. More reminders of sadness adding to our sadness.  Hugs, Dee

 

[kayc]

Marg, I echo the others here with their feelings about you.  You don't have to delete your word salads even if they're random, sometimes it's just how our thoughts come out.  Living alone takes much time to adjust to, I hope you're patient with yourself and don't expect more than you can of yourself. 

17 hours ago, Widow2015 said:

I am happy to read your BP has returned to a more manageable reading. You are the kind of sister I wished I could have had.  Hugs, Dee

Gwen, I can understand your hatred of that place AND your fear to come home, neither option sounds palatable to you right now.  I'm sure they won't send you home unless they think you have a way of handling it.  None of us like strangers in our house.  I appreciated Kelli staying overnight with me after my hand surgery just because I was afraid "what if I can't take Kodie out?", but turns out I did it.  I was afraid to be alone after my surgery in 2014 but somehow I did it.  I didn't even know if I could get up from the toilet or couch when I sat down, how I'd load the fire, etc.!

17 hours ago, Widow2015 said:

I am happy to read your BP has returned to a more manageable reading. You are the kind of sister I wished I could have had.  Hugs, Dee

Thank you, Dee.  I keep feeling I "should" go over there, etc.  I tried calling her last night, she didn't answer (she doesn't have caller ID but she may be avoiding the phone.  Sigh...  I know I'm better off staying away, I've already lost her, she has her medic alert, she has a caregiver, but damn if this doesn't hurt, it's very hard!  I know of nothing worse.  Except Gwen's situation rates pretty dang high in there!

[Gwenivere]

7 hours ago, kayc said:

I'm sure they won't send you home unless they think you have a way of handling it. 

That is where I run into doubts.  What I am getting in therapy here really doesn’t match what I will come home to, nor the equipment.  I can already relate to your concern about getting up off the couch or toilet.   Even if I were cleared to walk unassisted here, I couldn’t drag a huge tank.  I’m not getting much exercise.   I have a feeling I’ll be using a walker when I get home and I was hoping that would not be the case.  Don’t have to worry about oxygen at home as I have a house length tube.  
 

Just had my session today and got more answers on how the therapies work.  So many muscles involved that need strengthening without compromising the surgery.    My body will decide on the walker.  Funny, I worry about Mel as she is so skittish about anything not the norm.  She probably won’t come near me for a long time.  So much that is going to be found out at home.  I have a routine I do here that will have to be very modified.  Meals and the bathroom are gonna be the most challenging.  I’ve come to the conclusion that when/if my spine heals and if I’m still dependent, I’m going to need some serious mental intervention.  I don’t know if I can handle being more restricted.  I’m already on edge all the time.  The thought of all this I’ve been thru and so much to come without being better off truly scares me.  Having people come in defeats my goal.  I wanted more freedom.  
 

I read the mags about the world and find I am past being a part of long term change for the planet.  All kinds of plans for decades down the line.  It’s a very strange seeing dates that I won’t see or matter in my life.  

[kayc]

Maybe Mel will come to you when you're sitting on your couch or recliner?  A walker might be easier, my sister uses hers to carry things.  Which is okay so long as she doesn't obstruct her vision (what little is left of it) or go overboard.

12 hours ago, Gwenivere said:

Having people come in defeats my goal.  I wanted more freedom.

Look at it as temporary while your body is healing, little by little your strength will regain and the pain will lessen.  It may be so miniscule as to seem imperceptible but it will improve little by little.

I called my sister last night and told her I do NOT want to "talk about it" as I have to protect my critical BP but I just want to know how she is.  She was very glad to hear from me.  I think I've learned a lot from all this.  If/when this happens again, and it surely will, I need to be steeled for it, respond firmly and calmly, meanwhile stepping way back and not being responsible for her or what happens.  It seems the only thing that precipitated her vicious blowups on me was that she got a caregiver...dementia patients do not do well with change...not even welcome ones as it's a stress to them.  They blow up at the person they feel most comfortable with.  She's also very much in denial and feeling "loss of control."  When this happens I need to remain calm but firm and withdraw/protect myself.  I need to see before me DEMENTIA not the person.  She's in there in bits and fragments but getting eaten up by this monster.  I don't want to desert her, I love and care about her but I can't let "the monster" swallow me whole either.

[Widow2015]

kayc:  So relieved to read you were able to have your conversation with your sister.  It is so evident you love her and care about her.  Dementia is such an unpredicable monster, and to have to deal with her vision issues is only adding to her confusion and fear.  Dee

[Gwenivere]

I don’t see how I could carry anything much with a walker.  Tried a covered water pitcher here and it was very awkward.  I have the kind with a seat too, but not room for both.  I just have to accept this is really going to suck when I get home and I’ll have to have help come in on occasion.  It’s going to feel like prison in my own home.  I may be projecting, but going by today, after weeks of therapy, I’m in so much pain and facing a shower before more therapy.  So I can walk longer distances now.  That’s good, but it doesn’t solve not knowing if I can sit in my living room.  Won’t be going to bed for relief as it isn’t adjustable and no TV.  I’ll have to do my meds.  Don’t know how I’ll get up from several places without arms to help.

I’m glad you are finding boundaries with Peggy.  If this can keep you connected as long as possible it’s a good thing.  I’ve never had to witness a loved one go thru this.  I watched some relatives drink themselves to death, but I distanced after my fav aunt did that in my home who I was hiding from my abusive uncle.  I made a choice then to not get involved in other dysfunctions.  

[kayc]

I will distance myself for my own health as need be, it's a matter of time until she blows again.  I had a long talk with my other sister Polly about it last night, she also experienced it.  But Peggy did it repeatedly with me, no provocation, and still sticks to her guns about what she perceives her truth as...which is very incorrect and off base.  I can only agree "not to talk about it" as it does not help my BP at all.  This morning my BP was 125/72.  I have to keep it down!  No more 198/87!

I'm amazed what Peggy carries on her walker, her garbage for instance, from kitchen to doorstep, where a neighbor takes it out to the can for her, if I don't get there first to empty it.  I need to come back and do that today.  I keep telling her not to pile on so much stuff it causes her to lose her balance because she can't see through it with the little bit of vision she has left in one eye.

[Gwenivere]

just babbling here.........
 

Another night of hell.  I just don’t know how long I can maintain a decent disposition sleeping on these so called beds.  Today I woke up earlier and spent almost 4 hours trying to get rest with my hip screaming in agony.  Took the Tylenol they left for me.  That’s a joke.  Those are the times when my mind says it’s time to give up.  Rubbing up too close to the dark side.

one of my hair clips broke so a friend is bringing more up.  My aide spilled ice water on my tray and bed. PT and OT will be descending on me soon.  I called the surgeon about a follow up appointment next week and told them I can’t see going just to look at stitches as I would have to pay a medical transport both ways.  I’m so tired of trying not to bend when it’s frigging impossible all the time.  I pay for it, but it’s just not feasible.  I know I twist some too.  The only thing I’m good at is no lifting.  That’s frustrating when I want my meal and it’s a few feet away but a heavy tray.  I am cheating putting on socks and shoes.  The tool to zip up my shoes doesn’t work.  So I am responsible for some of this pain.  Not the sleeping one tho.  My right hip has arthritis and I’ve tried sleeping in the incision side and that’s a no go.  Now they want me to use the bathroom commode during the day.  Not a biggie except the oxygen tubing is so hard to get unraveled.  
 

Im going into my 4th week of this and it seems I’ve just learned to walk and do a few things in worse pain than before I did this.  I don’t know how you find motivation in that.  The dread I feel about going home just keeps growing.  One therapist suggested having Mel brought by for a few hours.  I can’t do that.  See her and let her go again.  I’ll have no contact like aides and nurses.  Not a fun social life, but at least I see people throughout the day and get help.  
 

wow, what a bore this is to read.  Im so grateful I have a place to just dump these thoughts rumbling around.  I talk to people I know on the phone, but I really don’t want to get into details.  Mostly it’s because when I have they say I’m going too far ahead.  While true, it’s human nature to do so when you know a big transition is coming and what you know will be limitations.  Big unknowns.  Today they suggested a home visit to see where I will run into trouble.  I don’t feel comfortable tying up the woman that is helping me with all these trips.  I will need a grab bar in the shower and I don’t want her having to wait around for Lowe’s to come by and install it.  Don’t know if she could.  They also suggested not getting Mel home til I know how I do.  I told them they didn’t understand how hard that would be.  I’d hate to have her there and not be able to care for her, but they don’t relate to being home without anyone you love and lost.  
 

I can also come back here if it’s too hard at home.  Great.  Another move back in, paperwork, meds scheduled correctly.  One asked for a list of my concerns so I will do that.  The biggies are getting dressed, showers, sitting in the living room, getting up from a regular bed and Mel.  Heck, I’ve babbled too long.  This is the effect of pain, lack of sleep and anger this has gotten so complicated.  If only Steve were here.  I wouldn’t dread going home.  All the stuff needed would be there and so would Mel.  😰

[kayc]

Oh gosh, Gwen, ice water to boot!  I hope she changed your bedding, etc.!  I realize your fears, they're valid, I hope when you do get home you realize ways to do everything even if it means part time help.  

Peggy's caregiver brought someone else there and they went through Bert's room, cleaning stuff out.  ???  Why did they choose that to start with?  Cleaning her LIVING quarters would seem a higher priority to me.  Oh well, her fight, not mine, I'm trying to stay out of it.

On another vent, they said on the news last night that Social Security will cut our checks by 22% by 2033...that's a year sooner than they said a week ago.  How are people supposed to make ends meet?  It's too late for us to make other plans now after we were told one thing all these years!  People COUNT on it!  Not like our living expenses will cut at the same time!  Do they really think we have that much play area?

[Gwenivere]

Wow, I can’t even think ahead 11 years.  I’d be almost 78 and I really don’t see me lasting that long.  The most I look ahead are months.  Everything is so complicated now with this surgery I already feel behind as I would have gotten my flu shot by now.  My days are so abnormal right.now.  
 

IOn reading more about SS it was in danger by about that time and hasn’t been being addressed.  Now it’s come more to light as the pandemic contributed to a faster decline.  They knew it was going to go broke but the fallout from unemployment and loss of jobs have moved up the clock.  If action isn’t taken now, it may not be fixed.  Unfortunately that could mean higher taxes now.  It’s all very complicated as things always are with this kind of stuff.  It always seems to me they wait til it gets in crisis mode.  This was known years ago before the added stress of the pandemic.

[kayc]

Yes they knew but did nothing and now it's all OUR problem!  They never should have stolen from us to start with, I'd like to see the accountability but of course those people are long gone now and we're left holding the bag.

I have the curse of my genes living well into the 90s, would be just my luck, still here on my own, shoveling snow, hauling firewood, getting things fixed...hopefully still able to drive!

[Gwenivere]

If what I’m experiencing at almost 66 is any indication of the future, I don’t want to get really old.  The saying if you don’t have your health really rings true.  I’ve seen some people in bad shape here and others seeming OK but obviously dependent on this place.  I know there are turnovers for short term recoveries.  I fall into that group. But I’d end up I this kind of place eventually.  I don’t think it’s really living.  I’ve seen life in nursing homes for 25 years.  I was always grateful I got to go home. I saw the lack of independence kill my dad.  The loneliness.  He surrendered to his cancer to avoid this outcome.  We were very alike, needing connection with the world, not a bubble of one.  

[kayc]

I get what you're saying.  I'm very thankful I can walk, with or without pain, I can still do that.  But I do NOT want to live into my 90s like is the curse of my family!  Maybe if I still had my husband, but I've been alone for 16 years and I constantly reach out to neighbors for interaction.  (I can picture them locking the doors when they see me coming!   )

 

 

[Margm]

I woke up to the ambulance in front of the apartments.  I could not keep looking, felt like I was intruding.  I've never seen my neighbor, knew she was very ill.  They never would let the people who spray for bugs come in.  Made them let them a couple of months ago and they were everywhere.  They have to spray mine twice to keep the neighbors bugs from coming into my apartment.  I know I do not like the smell from what they cook.  Don't know what it is, but I don't eat something with  that odor.  Not "country cooking" and I don't know how to explain it, but it makes me nauseated. She has "kin" come in all the time to help her. 

My brother-in-law and sister-in-law both have dementia.  My SIL was not happy when their only child (never married, a teacher), moved in with them.  I've talked to my niece, but not before my SIL called me and told me to tell Scott to come get her.  I didn't know what to do.  She has been away from the south, her old home, since about 1965.  She lives right outside of Albuquerque.  She is three years younger than me, but is clearly into dementia.  BIL got angry and got in his car and police stopped him driving wrong way on interstate.  Not drunk, just in early stages of dementia.  Sitting in police cell over night made him happy to give up his car keys, but my SIL fought it.  Finally, after police came out four times, she is settled down and the one 53-year-old "child" has them under control, very soft talking, very calm, and lives with them.  Still teaching, someone checks on them while she is working. On the other hand, Billy's nephew who is a year younger than me, he is into dementia now, and I am just shook up that so many of my "family" are in dementia.   

I probably watch myself more closely than I should.  There are words that won't come to me and I've found if you enter into Google a meaning of the word, the word forgotten comes up. 

Billy always said if I didn't have something to worry about, then I'd make up something.  I worry constantly about my daughter, son and granddaughter.  We have not heard from my grandson in at least a year..  He was totally sane coming out of rehab and sane enough to let us know that he was definitely going back into the drugs.  He was very clear thinking.  I think actually, he was living/married? to someone he thinks our southern family would disprove of, and maybe he is happy being there.  If he was happy, I would not disprove of it.  I just hope they can take care of him. 

Myself, I am slower, I cannot say I don't hurt anywhere because I do, can only take Tylenol.  I'm actually used to it.  Living alone is like being 8-9 years old and making me sleep in my own room away from my parents because there is a new baby.  I hear sounds.  I lock myself in my room at night.  I sleep good.  I read sometimes until 4:00 a.m.  Actually, we have had kids break into cars and steal whatever they can that you leave in your car.  They catch them, they are juveniles.  I leave my patio light on because the woman who lives "down the hill" parks in front of my patio fence.  I keep my light on for her.  She goes to work at the hospital at 4:00 a.m. 

We have more drive by shootings  (which would be hard to do in these apartments), but houses in neighboring towns have it.  In one high school, in three days, they have had to arrest about 20 kids, this was "gang" fighting.  So, these things do not only happen in NYC.  

Still waiting on Kelli's results of her tests, has to have CT scans too yet.  My son has adapted himself to my father's personality.  I know the sweet boy is in there somewhere.  He just does not talk.  Work, sleep, work sleep, and that is all.  This from the Romeo of young men since he was 13 years old.  I think the last one he was positive to be trusted, to find out she was writing one of his friends, I think that nine years turned him off relationships.  

Word salad for today.  Alive, not hurting any more than usual, but alone, trying to get used to that.  (Definitely for the best) for all of us.  Friends dropping right and left, I think that is where the depression comes in.  One friend had very dangerous surgery the first week in September.  She lives in Wisconsin.  I have not heard from her, don't know if that is good or bad.  Guess it is life as we know it when you hit 79.  

[Gwenivere]

9 hours ago, kayc said:

I constantly reach out to neighbors for interaction.  (I can picture them locking the doors when they see me coming!   )

I feel that way with my new friend that has been helping me.  She tells me I’m a priority as we keep getting closer.  I’m not used to having someone I can call so don’t want to burn her out.  
 

I envy you on the walking.  PT today was killer.  Walking pain is better than standing still pain, but I’m worn out I haven’t felt any significant improvement in a couple weeks.  If anything it’s harder as I am doing more.  It’s hard to gauge that by yourself.   And with surgical stuff I have no experience myself.  Steve’s were not ones that affecting his mobility.   

[kayc]

18 hours ago, Marg M said:

if you enter into Google a meaning of the word, the word forgotten comes up. 

Wow!  Thanks for that tip!  Sometimes I'm struggling to recall just the right word!

I don't know which is worse, not being able to see or not being able to walk, they're both so essential!  Two sisters can't see, very hard, can't drive either.  I am very thankful, pain that I have, I'm mobile and can see with my new glasses.  It's just hard to DO anything with these hands!  Sigh, we all seem to get something that makes life this age difficult.  

[Margm]

On 9/17/2021 at 1:36 PM, Marg M said:

  I know I do not like the smell from what they cook

I cooked a meat loaf dinner, one of the Lean Cuisine ones.  Whatever they cook next door has this spice added.  I don't use it, but it is mixed with tomatoes, I guess.  They are moving all her things out of the apartment.  I'm getting terribly old and cranky because one kid, probably 3-4 had a scream that would work in a (I hate to call it music) rap group because it is just words.  They could throw this kids screams in at the exact time and work around it.  I'm sure it would be a hit.  She wasn't hurting and each scream was the same pitch and length, pause, go again, and no one was bothered but me.  Old damn woman.  This woman was 90 and she has at least 100 children, grandchildren, and I think even at least one great-great.  It was like a New Orleans funeral, everyone was having a good time.  The granddaughter felt so sorry for me because I cried.  (I do cry at dog commercials), and this woman was ready to go "home."  I'm not sure I blamed her.  Last night the skunk weed smell was seeping through everything.  But, the kid was not screaming.  One granddaughter between 50-60 had a bottle of Vodka and she was happy.  I have not got my mail again in the last few days.  

Kelli's tumor markers were negative.  She got to quit the chemo.  Now for the MRI or CT or both.  

I got my regular flu shot today, he added some more to my blood pressure meds, supposed to work on the tremor, propranolol.  I knew that, but it also sometimes makes the depression worse.  My aunt took it.  We will see.  I told him no more antidepressants.  I took those suckers over 20 years and took Prozac so long I had a nightmare, was fighting "someone" in my sleep and reached over and bit Billy's shoulder.  He jumped out of bed wanting to know what was wrong with me.  I was in a nightmare fight with some more women.  He always said fight dirty, so I was.  Doctor cut down and then cut off the Prozac.  I didn't miss it.  (Neither did Billy).  He slept facing me for awhile.  

That's all down in the flatlands.  We had a "cool snap" and it is now 76 degrees.  Hang in there y'all.  

 

[Gwenivere]

Great news about Kelli, Marg.  I hope the other tests go well and no chemo!
 

I'll be doing the frozen meals too, soon.   Handy, but usually not very filling.  Not that I care much about food.  That is one of things I’ll miss about rehab, room service.  
 

if I knew then what I know now I never would have started antidepressants.  I’ve tried unsuccessfully to get of mine.  Something I could discuss with my shrink, but he’s a fan, wants me to take more.  Can’t afford to upset him or I’ll lose my Xanax.  I got suicidal on one of them.  Fortunately never hurt Steve.  
 

We just had cold weather too and getting warmer later in the week.  Fall is in the air tho.  Heard it was official the other day..  

what dog food commercials do you cry at?  I can’t take the ASPCA 2 minute ones of  hurting animals.  Love the Subaru golden retriever ones.  The puppy in the car seat always makes me smile.  

[Widow2015]

3 hours ago, Marg M said:

Kelli's tumor markers were negative.  She got to quit the chemo. 

Marg: Wonderful news about your Kelli.  Can only try to imagine what a relief you and your family must be feeling .  Thanks for sharing such good news.  Dee

[Widow2015]

40 minutes ago, Gwenivere said:

what dog food commercials do you cry at?  I can’t take the ASPCA 2 minute ones of  hurting animals.  Love the Subaru golden retriever ones.  The puppy in the car seat always makes me smile.

Gwen: Whenever the ASPCA commercial/ad comes on I grab the remote control and shut off TV.  My heart just can't stand to see the suffering animals.   The Subaru commercials make me smile too.  My very favorite commercial features a child in the hospital and the doctor/nurse says the treatment will be changed.  Next in comes this beautiful brown and white dog to the child's bed.  The beautiful dog has a face like my Maddie.  Tears and smiles follow everytime.  Dee

[Gwenivere]

Oh yes, that is a great commercial.  How beautiful your Maddie was.  Looks like a lot of St. Bernard.  I wish that treatment worked for us all!  🐕

There’s a new Rottweiler mix pup here that belongs to a staff member.  About 6 months old and so.......puppyish.  All legs and curiously.

[kayc]

Marg, that's great news about Kelli!  I hope she is all done with that!

I don't watch commercials, I record things and then watch/fast forward through commercials, so don't know most of them.  If I watched the super bowl I'd pay more attention to the commercials though, they are known for good ones! 

I'm glad you have a dog in there you can see Gwen, I am a huge dog person!  If I had no kids I'd probably leave everything to the ASPCA and my church.