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Major life stressors in addition to losing your love


Seabrook

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George is the first one who would have helped me, he's the most caring person I ever met.  My family doesn't live her and Polly is blind, Julie helps her husband's business and now realizes it's more than she wants to do, she told me I get Peggy, she'll get Polly, of course Polly still has her husband and hopefully always will.  Micks not saying anything, but then he's always distanced himself from us, being the youngest.  None of them are going to help with her, Polly ordered her a clock to tell whether it's am or pm, but alas she has to check it to know, not sure she will as she doesn't bother looking outside to see if it's light or dark out.  But at least Polly is a huge emotional support or someone who understands/cares that I can vent to.

Medical agencies are much better able to refer, make arrangements to get her into a facility, it's a matter of time when she'll be in that situation, she falls easily and takes stupid chances, it's just a matter of time now.  Next time she is not coming home.  I will make sure of that.  I fought to get her home but now I know better.  She is good at concealing how bad she is (dementia/common sense...lack of) but can only do it so much before it's realized.  Plus she'll have a caregiver hopefully who will have 2 cents to add.  I will beg off.  I didn't mind helping with bills/bank reconciliation but can't if she doesn't save her mail and if she LETS me.  I didn't mind bringing her food until she wastes it.  I didn't mind getting groceries or local trip to the doctor once in a while, but all of these out of town trips with multiple stops are too much, and so is the condition of her house.  She can HIRE help and needs to.  I have my own house to tend to.

Right now I'm in the middle of getting my house painted, as he has time.  It's been going off/on for eight days, he'll be back in a couple of days to finish.  It's a lot.  I spent all day yesterday putting things back, including 5-7 wheelbarrows full of wood back in the wood rack.  I cleaned up the 30' patio, and got everything onto one side of it except the porch swing I need help with.  He still needs to do the outer half of it.  I saw redwood stain he must have intended on doing the patio with but never discussed with me, I left him a message and said not to, some of the patio needs replaced anyway and I'm not tackling that yet, I still need the back of the garage replaced next year, one thing at a time.  I also told him he did not need to repaint the wood rack as it's covered and just gets bunged up again anyway.  I wanted the HOUSE and patio RAILS and RAFTERS done, that's all!  Instead he painted two downspouts which upset me because they'll peel someday and did NOT need painted, I can no longer buy charcoal grey downspouts.  He's a hard worker but doesn't retain/listen well.  The front door needs redone as it needs open when it is but I can't have him do it when he comes back as that is my foot surgery day and Kodie will be in the house alone, I do NOT want him opening the door while he's alone in here and letting him loose, it could be life or death for him!  Esp. since I can't trust him to have the gate shut and latched first.  

Does life ever get easy? @tnd when you get a chance, I hope you'll let us know how it's going!

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Gail 8588

Kay, 

You still have a lot on your plate, without running over to Peggy's every time she wants you.  

Scheduling workmen, making sure they do what was contracted for, is incredibly stress provoking and thus exhausting.  My husband used to do much of this for us. But now it is all on me.  I empathize with you as you do it all yourself.

Life without my sweetheart will always be more difficult than it was when we were together. It is just reality. 

You have been 'doing it all' for years and you are an inspiration to me. I know you will keep helping Peggy as you are able, that is just who you are. But I hope you let yourself relax a little bit during this time she is pushing you away. 

Gail 

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Kodie and I visited her yesterday.  Then I went and bought some pork takeout for her, two meals, went back to her house and she was outside smoking!  This after leading us all to believe she quit months ago.  It scares me that she could start a fire, not to mention you aren't supposed to smoke before surgery and you betcha she won't stop.  She's lying to everyone about it, normal for her.  I won't tell my other sisters as they'll just worry and nothing they can do about it, but I do hate that she's so deceptive about everything.  It also means she has an enabler somewhere.  The dinner I brought her Sunday she ate one of the meatballs and said she threw up (I ate some, they were good).  Sigh...some people you can't help.  I feel myself pulling away from her more and more.

Painter back today, he's out of the main color so I'll have to pick some up after my foot surgery tomorrow.  Yay.  I told him he needs to redo the front porch as it has streaks of the old color showing through.  You have to stay on top of workmen and I hate the role of nag!

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I am in the worst pain I've had in my life, it may not compare to childbirth, but that is over and done with, this will continue for some time.  They gave me NOTHING for the pain (foot surgery yesterday).  I took my sleeping pill at bedtime, nope, nada, not happening!  I finally took a ten year old Vicodin, I was that desperate.  Searing hot burning pain, even to touch the skin 2" outside the bandage to the left or right, it was unbearable!  No idea how I'll take Kodie on walks, they'll be short, that's for sure.  Not going anywhere if I can help it.  So glad I stuck to my guns with my sister, there's no way I could have driven her all those miles to the doctor today.

Still dealing with painter.  

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Diane R. E.

Kay; I'm so very sorry you are dealing with such pain. It was quite unfair that they didn't send you home with something for the pain. I just don't believe in suffering if there is something that will help. Did they tell you to expect severe pain or do you think you are having a complication? Maybe you should call the surgeon who did the surgery? 

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On 9/1/2021 at 10:10 AM, KayC said:

I feel myself pulling away from her more and more.

KayC:  If Peggy is using oxygen, particularly the kind from those green cylinder shaped ones, that is a major fire hazard. Very dangerous. I'm thinking that once she is in a facility where she will be safer and looked after (not that you weren't doing a good job) it will relieve not only some of the stress it has put on you, but you will physically feel better. And then you will be able to enjoy your visits and time with her without so much worrying, work and exhaustion or even resentment.  Her going to a facility would be the best thing for the both of you and your relationship. I hope she can get into one soon but I know it won't be easy.  

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foreverhis
7 hours ago, KayC said:

They gave me NOTHING for the pain (foot surgery yesterday). 

WTH!!!  I am stunned.  I know we're all, "Don't let people get addicted to opioids" these days and rightly so, but they actually have therapeutic uses for freaking pain.  My doctor explained to me that one of the reasons I never feel a "high" when I take mine (I resisted for a pretty long time) for my chronic conditions is that when we take them because we have pain, the chemicals go to work with our bodies to combat that pain, rather than free-floating in our systems.  He says it's the difference between reliance and addiction.  My body relies on me taking my medication when I need it, but I am not addicted to taking it for a high when my pain levels are not as bad.

Okay, now that my little rant is out, I'm still furious on your behalf.  About 30 years ago, I had corrective surgery on both my feet.  My ortho said, "We're doing both at once because it's going to hurt so much that you'll never come back to me if we only do one."  He was not kidding!  It was the worst pain of my life.  I was in a wheelchair for 6 weeks and out of work for another 6.  I have no pins or screws and he did an amazing job, but it took months before I had absolutely no pain. 

I mention this not to make you think that's how it will be for you; I'm sure it won't.  Mine was extensive corrective surgery on the entire bone structures of my metatarsal and toes.  I even had to have one toe shortened by 3/4 inch.  But I do mention this so you'll know I understand post-surgery foot pain.

There's no soft tissue and limited blood flow in our feet, so there's no cushioning and healing takes longer.  I'm so relieved that you have completely controlled your diabetes because at least that makes foot issues a bit less of a concern.  It's unbelievable that they sent you home without any pain medication.  At a minimum, you should have 5-7 days, but even more reasonable would be 5-7 days and then enough to taper down over another 5-7 days.

I am so sorry you have yet another literal pain to contend with now.  It is a darn good thing you refused to drive Peggy.  You need to take care of you for a while.  You've gone above and beyond, IMO.  If she can't be bothered to take care of the slightest issue on her own, then that's on her at this point.  You're right that she clearly has an enabler because someone is bringing/buying the sodas and junk food and cigarettes--and it sure as hell isn't you!

Sending prayers and hugs for healing and comfort. 

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10 hours ago, KayC said:

I am in the worst pain I've had in my life, it may not compare to childbirth, but that is over and done with, this will continue for some time.  They gave me NOTHING for the pain (foot surgery yesterday). 

KayC:  Oh KayC! I didn't see this earlier. I'm really sorry about your post-op pain. They are real sticklers with pain meds these days. They claim it's because of the opioid crisis and so doctors are not only hesitant because their records are being scrutinized but hospitals are all on-board with the "say no to opioids" message. Happened to my husband in the hospital, despite the obvious fact that he was in a great deal of pain. He suffered because of it. Before that, even his nephrologist stopped prescribing him a mild low-dose pain med for his diabetic neuropathy. The pain kept him from sleeping at night and he had been on the same low dose for a few years with no trouble or addiction. But no one cares to listen to the patient anymore, they put everyone into one box. So I guess they think it's better for the patient to writhe in pain and suffer. What a bunch of nonsense! Karma coming for sure. 

I wish I knew what to do for your pain. Did they give you a special boot that looks like a sandal to wear? It helps avoid pressure on your foot when standing/walking, You can get them online. And of course call your doctor and give 'em heck and beg for their help. Altho I don't know how you'd get a prescription filled now. You are probably pretty darn upset, I am so sorry!! 

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3 hours ago, foreverhis said:

doctor explained to me that one of the reasons I never feel a "high" when I take mine (I resisted for a pretty long time) for my chronic conditions is that when we take them because we have pain, the chemicals go to work with our bodies to combat that pain, rather than free-floating in our systems.  He says it's the difference between reliance and addiction.

foreverhis:  You are correct. I had a doctor explain that to me too. And I knew a girl who had to regularly have morphine injected into specific muscles that were causing her pain and she could function like normal despite the morphine. Our doctors and hospitals need to stop feeling threatened and do the right thing.  

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Gail 8588

Kay, 

A dentist once told me that taking 2 Tylenol and 2 Advil at the same time is a pretty powerful pain med. Something about how the two medications work together.

I am so sorry you are suffering so.

Gail

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22 hours ago, Diane R. E. said:

Kay; I'm so very sorry you are dealing with such pain. It was quite unfair that they didn't send you home with something for the pain. I just don't believe in suffering if there is something that will help. Did they tell you to expect severe pain or do you think you are having a complication? Maybe you should call the surgeon who did the surgery? 

I did call her, she wanted me to come in, I said "Hell no! I'm not driving 100 miles with this kind of pain!"  She did NOT prepare me for this, at all!  No instructions to ice/elevate, but I did both.  She SHOULD

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22 hours ago, Diane R. E. said:

Kay; I'm so very sorry you are dealing with such pain. It was quite unfair that they didn't send you home with something for the pain. I just don't believe in suffering if there is something that will help. Did they tell you to expect severe pain or do you think you are having a complication? Maybe you should call the surgeon who did the surgery? 

I did call her, she wanted me to come in, I said "Hell no! I'm not driving 100 miles with this kind of pain!"  She did NOT prepare me for this, at all!  No instructions to ice/elevate, but I did both.  She SHOULD have given me a pain Rx before I left!  There's a law that says they can only give pain meds to you in person and you have to take it to the pharmacy in person.  She should have done it while I was still numb, now it's too late.

I asked her if what I was going through was normal and she said yes it can happen.  Well thanks, thanks for preparing me.

20 hours ago, tnd said:

KayC:  If Peggy is using oxygen, particularly the kind from those green cylinder shaped ones, that is a major fire hazard. Very dangerous. I'm thinking that once she is in a facility where she will be safer and looked after (not that you weren't doing a good job) it will relieve not only some of the stress it has put on you, but you will physically feel better. And then you will be able to enjoy your visits and time with her without so much worrying, work and exhaustion or even resentment.  Her going to a facility would be the best thing for the both of you and your relationship. I hope she can get into one soon but I know it won't be easy.  

She's fighting tooth and nail for control and she will not cooperate with anything, not with me and certainly not going into a facility.  It took us a full year to take my mom to court to get a court ordered medical evaluation so we could get her someplace safe with her dementia.  It may take that with Peggy.  It'll be a lot easier if the doctors instigate it but my mom refused to go to doctors or take her Rxs her last year at home.  Peggy is kind of getting that way.  She's out of my hands.  she has oxygen but not taking it and I doubt she's testing her levels.

No there's no boot, this is on top of my foot and all of my shoes but one (cold) pair of sandals cut into the wound, so I'm wearing socks and sandals, can't even wear my slippers!

The doctor told me to take Ibuprofen and Tylenol when I called her but I told her it raises my BP and BS, something I'm working hard at, I'm on 3 Rxs for BP and it raised 50 pts after the surgery!  Struggling to get it down.  My friend George explained to me that it's normal for it to do that with this kind of trauma and not the same as sustained high BP, that was a relief to know, meditating/prayer to get it down to a better level.

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Diane R. E.

Kay; I'm so sorry about your experience and the pain you are dealing with. Shame on your doctor and the other healthcare professionals who didn't advocate on your behalf. There are pain meds that don't contain opioids that could have been prescribed for you, and they certainly should have given you detailed discharge instructions. I don't know exactly what you had done, but you might want to check with your doctor about elevating and icing your foot - both of those will decrease arterial circulation, which could make the pain worse. But check with the doctor, even though she should have prepared you!

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My friend George works for two doctors and said the laws have changed more recently and they have restrictions on prescribing pain meds, they can't give you a Rx "in case you might need it" you have to BE in severe pain first and then go in person to the doctor to get it!  So I owe an apology to the doctor for every bad thing I thought about her, EXCEPT she should have prepared me and did not include any info on taking Tylenol/Ibuprofen or icing/elevating extremities esp. since the feet are very different from arms/back, etc. I think there should be an exception for "in case of..."  JMO

Ibuprofen raises my BP, which I continually battle, and Tylenol raises both BP and BS which I'm working to keep down also.  That's all she suggested.

21 hours ago, Diane R. E. said:

you might want to check with your doctor about elevating and icing your foot

I already did it that night and told her about it, she agreed, don't know why there were no instructions on that but maybe (I won't hold my breath) they'll include that on future instructions for people?

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6 minutes ago, KayC said:

My friend George works for two doctors and said the laws have changed more recently and they have restrictions on prescribing pain meds, they can't give you a Rx "in case you might need it" you have to BE in severe pain first and then go in person to the doctor 

Not sure this is correct. Certainly they are stricter about giving out painkillers but when I had surgery for my broken wrist recently I was given something when I woke up and then left with a prescription for oxycodone. They didn't wait for their painkiller to wear off to see if I needed it. Doctors generally know how bad it will be. I only took them for a few days but I needed them at first. I also had proper written instructions on icing etc, problems to look out for. I think your doctor has treated you shabbily!

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On 9/4/2021 at 11:01 AM, KayC said:

I'm on 3 Rxs for BP and it raised 50 pts after the surgery!  Struggling to get it down.

KayC:  Yes, a rise in BP after surgery is normal. You have inflammation going on from the surgery, which is a stress on your body but also, they probably gave you lots of saline in an IV during/after surgery and you could be slightly fluid overloaded, which causes the BP to rise. Should only be temporary tho. Sorry you are in pain, no excuse for that doctor letting you go without pain meds or instructions.   

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My BP was 131/ this morning so glad it came back down!  My blood sugar is still 120s though, a rise of about 20.  It'll come down when it does.  I'll take Kodie for a walk soon and that'll help it.

16 hours ago, tnd said:

they probably gave you lots of saline in an IV during/after surgery

Nope, no drip, I won't allow it.

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BP 198/87 this morning...yesterday my sister attacked me all day, hanging up on me twice, accusing me of things, she's plumb crazy with dementia.  I've done everything I could to help her this last year.  Bert will be gone one year 9/23.  I can't handle this anymore, I've got to try to save myself.  She's lying constantly, changing her stories, blaming me for everything.  I know with my head this is dementia but with my human heart, it hurts and crushes me.  I couldn't sleep last night.

The smoke is horrid, predicted to be 2805 today, the worst I've seen in my life was 700s two years ago, couldn't open windows/door to cool down at night.  Supposed to be in the 90s today.  I can't breathe, my allergies are full bore.

Air 090721.JPG

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Gail 8588

Kay, 

It is the dementia and it still hurts even when you know that.  It shouldn't, but it does. 

My brother and my father were as close as 2 humans could be. I often thought my brother's DNA would show he was a clone of our dad. Not only did they think alike, like all the same things, they liked and respected each other as scientists and colleagues. They also loved each other as father and son.

But when my dad had full blown dementia, he said some extremely cruel things to my brother, and it nearly destroyed my brother. 

I kept telling my brother it was the dementia talking, not our dad.  But it still hurt him tremendously that dad could ever think those things about him. 

 Try your best to not take it to heart.  But you also should protect yourself emotionally by limiting the amount of abuse she can hurl your way. 

You have been a wonderful sister to Peggy.  Her brain is just malfunctioning, and from her side it is frightening.  She is lashing out, trying to gain some control of her situation. 

I am so sorry your air quality is so bad. From the weather channel maps, it looked like the area just to your west had much better air quality.  I am hoping that air will shift east and bring you some relief soon. 

I have never had to deal with extended periods of poor air quality, so I have no tips for you.  Maybe others here have some ideas. 

I hope your foot pain is subsiding and that you are healing well.

Hugs

Gail

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7 hours ago, KayC said:

I decided I needed to let go, I can't keep doing this, let her caregiver or the state take over, she won't let me help her anyway.  

KayC:  I am so sorry for all you are having to deal with. You made a good call. It is out of your hands and something too large for any individual to do by themselves. Let the pros handle it now. You've done all you can and then some. You did good. 

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4 hours ago, KayC said:

It wouldn't hurt as much if I'd lost her to death as this because she hates me now and even knowing with my brain it's dementia, still doesn't alleviate the pain.  There's more than one way to lose someone.  :(

KayC:  Yes, there is more than one way to lose someone. I had to let go of my closest friend since childhood due to her permanent head injury from a car accident. She had her good days and her bad but I accepted that and we would just get through it. Sometimes she knew who I was, sometimes not. She even became very violent towards me, which I was warned about. That was a scary day and it broke my heart. But I stood by her. The last friend that didn't disappear on her. But then things got a whole lot worse and she refused to see me or take my calls. Her father finally told me to spare myself the grief and let go of her. What he didn't know, it was already as if my friend had died in that car accident....I had let go of the friend I knew before her accident and go forward, just wanting to be friends with a "healthy" her (healthy as in not ill in the hospital) . No matter who or what she had become. But she wanted no part of me. So I let go. That in itself was like a death. That was more than 30 years ago and to this day I still think of her and miss her. It does hurt. You are going to hurt too over the loss of a sister you once had who is now not that same person.  

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Thank you, Gail.  This morning my BP was 127/70.  I have to take someone home today that necessitates my driving by her house, it's a 10 mph street, ugh.

tnd, I'm sorry you had to experience that, so hard.  Yes it feels like a death only maybe worse, so hard NOT to feel it's personal when it sure sounds/feels like it!

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2 hours ago, KayC said:

. . .  so hard NOT to feel it's personal when it sure sounds/feels like it!

Kay, 

Hugs.  We humans are really quite fragile emotionally.  Words do hurt. Words cause enormous damage.  

That old rhyme:  "sticks and stones may break my bones but words will never hurt me", got it completely wrong!

Dementia is a horrible illness, for both the person who is losing their mind and for the people who love them. 

The brain of the person with dementia knows what words will inflict the most pain, they just have lost the normal buffers that would keep us from saying things that cruel.  Peggy doesn't mean it, even if it sounds like she does.  Her brain is failing, and it is trying to maintain some level of control. 

We can't always control our brains.  How many nights have we all tried to make our brains stop thinking about our loved ones.  Our brains do not take orders from us.  

Peggy may have times when she is lucid (more like her old self) when she will regret hurting you, if she remembers.  Or she may just keep getting worse. 

You have been a good sister to Peggy.  Don't let these cruel outbursts define your relationship with her. Peggy doesn't hate you, she hates that she is losing her mind, that everything is becoming confusing and frightening to her. Her brain is lashing out at you, because you are the one that has been there for her.  (Fulfilling the old adage: No good deed goes unpunished.)

Wish I could give you a hug.

Gail

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foreverhis
3 hours ago, Gail 8588 said:

The brain of the person with dementia knows what words will inflict the most pain, they just have lost the normal buffers that would keep us from saying things that cruel

Though it's not the same and is temporary, there's a thing called hospital-induced delirium.  It's more common than the medical community will admit, so even though they have measures in place to help treat it, they don't prepare patients or their families for the possibility at all.  Patients with systemic infections, especially urinary tract or kidney because those go right to the brain, are most prone to it.  Bladder cancer patients, especially those who are older than 60, who have had chemo, and who have had surgery, are prone to UTIs.  Yeah, John hit all three of those, so fighting infection was a real challenge.

One morning at the hospital, John woke up and was not himself--literally.  His brain had gone completely sideways, as if he had developed instant severe dementia.  The things he said to me, the things he accused me of, and his whole demeanor caused me so much emotional pain.  I called my SIL, his sister who we're really close to.  She had been caregiver for their mother and her FIL through Alzheimer's.  She also leads a support group for caregivers now.  She reminded me that it wasn't really him, which I knew, but it didn't make it hurt any less.  Then she said that research and anecdotal evidence shows that even in the depth of delusions or dementia, most patients lash out at the people who they know or believe will forgive them the easiest.  That's why spouses are often the "target" of dementia abuse.  It didn't and still doesn't make those words less painful to remember, but I try and remind myself of the truth.

Once he was out of the delirium-induced delusions and confusion, he didn't really remember anything.  The doctors told me he probably wouldn't and that the best they can figure is that it's the brain's way of protecting itself.  John wanted to know, but I told him that the doctors said it was best to just move forward.  I think he suspected that he had said horrible things to me.  I simply said he was not himself and that none of it was his fault, just as his cancer was not his fault.  Unfortunately, we dealt with more than one bout of it.  It never got easier for me or, I suspect, for him.

It did feel like I lost him temporarily, though during those times it seemed like forever.

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1 hour ago, foreverhis said:

Though it's not the same and is temporary, there's a thing called hospital-induced delirium.  It's more common than the medical community will admit,

foreverhis:  My husband had this during his final months. He was in/out of the ICU a lot. He was fighting a lot of infection. Only one nurse knew what it was and explained it to me and NO ONE tried explaining it to my husband. The other nurses acted like I didn't know what I was talking about. But I read up on it so began questioning them about making sure they opened the window shades and closed them so that my husband could see when it was daylight vs nighttime. Stuff like that. And yes, he talked a lot of crazy talk. But once I explained it to him (when he was coherent), he seemed to understand. He would ask me if something was just a hallucination or if what he saw or heard was real. Of course I couldn't help him when he was delirious but thank goodness we did have a good day of "real talk" a few days before he passed. But when he was delirious, it was so hard to have a conversation with him, if at all. Was painful.  

   

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foreverhis
1 hour ago, tnd said:

Of course I couldn't help him when he was delirious but thank goodness we did have a good day of "real talk" a few days before he passed.

John was in horrible pain, but lucid, before we put him on comfort care.  Once on comfort care and with less pain, he was calmer and, in some ways, both of us having come to grips with reality made it easier.  His last day, the last few hours, he was pretty out of it, but that was okay.  I believe he could hear me, our daughter, the music I was playing, and the nurses and CNAs who all came to ask if they could say goodbye.  I believe he could feel me holding his hand, stroking his arm, kissing his forehead.  That morning we'd been able to talk a little.

After his delirium episodes, I did tell him a few of the funnier delusions he'd had, like thinking he was still in high school or saying he didn't want to go to work if he had to wear clothes, but never told him any of the painful, hurtful things he said because it would have served no purpose other than making him upset that he had been cruel to me.

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My sister had that when she was in the hospital, she sounded nuts but she didn't lash out.  She said the most cruel things to me, I know I won't ever forget this even though I'd love to.  And two days later she called and gave me more, denying anything she said but attacking me all the more.  I just can't subject myself to more, II can't handle it, my BP can't handle it.  II don't know what to do.  I tried to call her last night but she didn't answer.  She hasn't tried to call me.

I know what you're saying (with my head) but oh God it doesn't feel it in my heart.  :(

 

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I feel like I'm caught in a no-win situation where I'm damned if I do, damned if I don't.  If I see/talk to her I stand the chance of a stroke, if I don't...well, it's my sister and you all say she can't help it, I hate to desert her, but then again I don't see how I can do this and come out alive.

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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.

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Kay, 

I totally think you should withdraw and protect your own health when Peggy is lashing out at you.  Trying to reason with her is not possible.  She may have periods of time when she is more in her right mind, but it won't occur due to a reasonable conversation you have with her.  You can't convince her to be reasonable. 

Dealing with my dad's dementia was the most difficult thing I had done in my life up to that point.  I felt I was losing my mind.  My stress level was through the roof. 

I just don't want you to  think Peggy really hates you, just because she is saying it now.  It's really not Peggy saying it.  The cruel things that people with dementia say are not what they would say if they had control of their minds. 

Peggy may very well have always been intentionally dependent (getting other people to do things for her that she could have done for herself), she may have always been stubborn, but I am sure she was also witty, funny, helpful  and a dozen other things. She wasn't intentionally cruel, or you would not have talked to her over the phone daily for the past many years. 

I am so glad you had a better conversation with her today. But dementia is a relentless monster, slowly advancing its control. 

At some point, you do have to back away and save your own health and sanity.  It sounds like she is at that point.  It is just really hard to feel like you have given up on them, because you still love who they were to you, my dad, your sister.

I'm so sorry if you thought I was saying you needed to be more understanding and try harder with Peggy.  I didn't mean that at all.  I think you have gone many extra miles to support your sister, out of your clear love for her. But with her dementia, it has become too much. You do need to step back to save your own health.  Just try not to let her recent verbal attacks color your memory of your relationship to Peggy. 

Hugs

Gail

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foreverhis
On 9/11/2021 at 12:41 PM, KayC said:

I know what you're saying (with my head) but oh God it doesn't feel it in my heart. 

It does hurt deeply.  It's so painful to hear because it doesn't matter what our minds know logically, we hear it with our hearts.  The words go straight in and twist us up.  Nothing we tell ourselves in the light of reason can help us unhear them.

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12 hours ago, KayC said:

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.

KayC:  You might be onto something now. I think a person in this situation would feel guilty for backing away to look out for their own health but really, why should they? It's not like a scary movie that scares us and once it's over, we forget about it and are no longer scared. It was just a movie. But in this case, it's a real, living and breathing person and a family member no less, not make-believe and it hurts you with insults. But...it's not the sister you knew. And somehow you have to figure out how and when to back away from the dementia in her while still loving her. I don't think that would be easy but you are learning that her dementia now has a direct effect on your BP. Sometimes people's BP goes up when a doctor comes near....they call it "white coat BP". I get that sometimes. Once the doctor steps away, my BP goes back to normal. Maybe to avoid her dementia making your BP rise you will need to consider more phone time with her now and less face time. Or maybe you can check in on her caregiver and see what kind of day she is having and if you should pay her a visit. Or shorten your visits. Please don't feel guilty for looking out for yourself. You said you still love your sister, you didn't say you hated her. You're doing good, considering.  

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Gail, what you are telling me I already stated, I realize that, my going forward is going to be different than this last year.  I will no longer accept responsibility for her, she is extremely stubborn and fights tooth and nail on everything, no matter if she needs it!  I will let someone (her caregiver) who is not emotionally attached to her, deal with her.  I will do little things for her as I feel and am able...so long as she is not striking out at me.  If she comes at me again, I will remain calm and get the hell out of there!  Then I will take a break, a week or so if need be.  You are so right, there are bits and fragments of her in there, but the "monster" (dementia) will continue to take over more and more, and that is what I expect.

I had a mom go through dementia, I was there every bit of the way, but she didn't turn mean, quite the contrary, she was softer than the monster she had always been the rest of her life.  I didn't expect this.  I also had a close friend go through it, she didn't get vicious either.  But I've heard this can happen and now I've seen it...I expect more of the same, I've had to detach.  I want to be there for her as I'm able, but now I know what I can handle...and what I cannot.  My BP was 125/72 this morning.

21 hours ago, Gail 8588 said:

She wasn't intentionally cruel, or you would not have talked to her over the phone daily for the past many years. 

Yes.

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KayC:  I think what you are going through is very much a loss. The loss of the sister you had and knew. You are having to go through a grieving process. For me, it's the loss of the brother I once had and knew. I realized last night I am already starting to grieve losing him. He's alive but not the brother I once knew. That brother is gone. Another grieving process I need to confront while grieving the loss of my husband. I thought of you and your sister; she's alive too but not the sister you once knew. We've lost them and are facing another grieving process. 

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You are right, I am very sorry for how things went with your brother.

I tried to get Peggy's eye appt for macular degeneration set up today for when she's done with the cataract process, they never called me back.  Nor did I ever hear back from the electrician, been trying to get him out to her house for two months, they said it'd be three weeks.  No call back.  These things are so frustrating on top of everything.  I feel like I'm trying to run two households and it's a bit much.

On another note, we're supposed to get a couple of inches of rain by this weekend, it'll be hard for the ground to soak it up since it'll be the first real rain in months.  But it should help the fires!  The two closest (under 4 miles from here)...one is contained, the other only 11%.

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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?

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16 hours ago, KayC said:

I tried to get Peggy's eye appt for macular degeneration set up today for when she's done with the cataract process, they never called me back.  Nor did I ever hear back from the electrician, been trying to get him out to her house for two months, they said it'd be three weeks.  No call back.  These things are so frustrating

KayC:  I'm running into basically the same problem -no call backs. I think businesses and doctor offices still have their employees working from home so getting to speak to someone or getting a call back or even a response to email is a lot harder these days. Thanks, Covid! Pharmacies are really bogged down. I tried calling one of my doctors, couldn't get thru to speak to anyone for 3 days! 

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5 hours ago, KayC said:

 

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.  . . .

Honestly Kay, I wouldn't worry about the SS issue.  Those numbers are "If Congress does nothing."

I really believe that Congress will move money around and  keep paying the full benefit amounts.  Both parties know retirees vote. 

It's just one of those headlines that gets clicked on a lot.  Congress has "borrowed" money from the SS trust fund when it had big surpluses.  They will put money back when it needs it. But they will probably wait until the last minute  and blame the other side for the problems.  So sad that the politicians will stress out all the retired folks, but that seems to be how we run government these days. 

Gail

 

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19 minutes ago, Gail 8588 said:

So sad that the politicians will stress out all the retired folks, but that seems to be how we run government these days. 

Gail 8588:  I agree. Any more, politicians stress everyone out. Reminds me of that children's tv show Romper Room. I'm sick of politicians -on both sides of the aisle. I've been calling the SSA every day about my Widows Benefits and they are STILL processing my application. It's been 3 months!   

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Well I found out why the eye doctor didn't call me back, they totally left out the mention of her dementia and called HER instead, and no they did not make an appt for her so I have to call them back today!  I also need to call (again and again!) the electrician back out to her house.  It should have happened a month ago.  AND I need to try to get a "new patient" appt. for her at her NEW doctor's office and maybe they can then handle the request for records if they shove it in her face and have her sign it when she comes in AND I need to call her caregiver to take her in.  Why does no one else think of these things?!  Rhetorical question, I know.  I was at her place yesterday and the caregiver had taken lots of crap out of Bert's room and filled up her garbage and all around it with junk that could have been doled out, but never took her household garbage out (she said she'd planned on doing it...but she can't, not without falling, not a good ideal), so now II have to go back there today and take care of it as I had an appt to take care of yesterday.

BUT my BP this morning was 118/62 in spite of not being able to sleep because of noise from a frog or something outside (I hear it a lot when I'm trying to go to sleep but do not know where it's at exactly).  

How long does it take to process an application?  Depends, you're talking about gov't workers here (sorry if anyone works for the gov't!).

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I had a scare with Kodie, he ate 1/3 of a small cardboard takeout container (never having those around again!) and was listless, whimpering yesterday, wouldn't eat or play, I was seriously worried about obstruction, decided to give it one day to wait/watch, he pooped it out in pieces, I hope nothing is lodge somewhere, but he's pooping peeing, eating, drinking and finally smiling again, pulling on his walks!  I think walking helped, I keep hearing in my mind a vet telling me years ago when Arlie ate a huge container of dog food that walking aids digestion (he couldn't even sit down!) my son and I walked him until midnight!  He pulled through.

Then a scare on my truck, I'd noticed when I drove it that the washer fluid sprayed on passenger side but not driver's side, so I opened the hood and saw oil everywhere, the cap on the engine missing.  I also noticed a couple of tubes hanging open.  After freaking out and jumping to worst case scenario (don't you love anxiety!) I took pictures and sent them to my son...he sent one back with the lid circled (I'd left it off when I'd added oil) and he called and told me the two tubes just need put together and a wire put around it to hold it together so will do that today, but I put it together and it works now, filled oil up, tried wiping things down, don't thiink I'll ever get it all off my hands!  

A day in the life of...

Things we'd never go through if they were still here...

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19 minutes ago, KayC said:

 

 

Things we'd never go through if they were still here...

Kay,

So true!  We have all our regular chores and responsibilities, but now we also have our husband's chores and responsibilities. And we have so much less familiarity with what they did. It's a lot of work and it's endless. 

So glad Kodie is working things out and that your truck issues weren't as bad as you feared.  

Gail

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