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My sister, Peggy


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I went to visit my sister Peggy yesterday, she has been moved to a rehab center and could be there 3-6 months or even a year!  They had not prepared her for that or if they did mention it, she forgot.  Her dementia has greatly worsened since this fall and subsequent surgery!  I learned yesterday that her heart is not doing well and her blood pressure is out of control.  Not surprising, she's not only been through a lot of trauma, but has not kept her regular medicines down since throwing up the last three months due to the pain medications...she wasn't letting the doctors (or me) know that.  I knew she was at first, but she told me she wasn't anymore...not true.  Her story vacillates continually so it's had to get a straight story from her.  She already had COPD, now she is on oxygen 24/7.  She's very weak.  They had her sitting up 1 1/2 hours and she said she was in excruciating pain the whole time, she felt she couldn't take any more.

Yesterday I learned she is on suicide watch.  She told her doctor she is feeling suicidal.  He told her he is required to report it and will have to tell her husband, so she had a talk with him and me.  Her husband is a gruff sort of person that my family doesn't like because he's so obnoxious.  I know him better than the rest of them do, and love him, he has a good heart buried somewhere in the center of him, I've seen it.  When my dog Lucky was attacked by another dog, and her innards were hanging out, it was Bert that came up and got us, and gently put her in his van, and I rode in the back with her, and drove 60 miles to the ER where she had surgery.  When I was married to my kids' dad and my car broke down (valve problems) an hour away, my husband wouldn't come get me and the kids, but Bert did.  When I had surgery and was back at home and needed stool softener, it was Bert that got some and brought it to me.  When we had a cat that had been attacked and had lost most of it's blood, again, it was Bert that put her down to spare us having to...she never would have made it to the vet over an hour away and we didn't want her to suffer any more.

But I've also seen Bert's other side...more often than not, yelling (he only recently got hearing aids and I've noticed he isn't so loud now), brusque, and often driving people away.  So his response to Peggy made me cry...he told her he understood (her feeling suicidal) and said it's her pain talking.  He said, "We're going to get through this, together."  He's drove the hour down and hour back to see her every day since the surgery, closing his store.

I told Peggy yesterday that I'd already decided if anything happens to her, Bert has a new cribbage partner.  I told her I worry what would happen to him if something happened to her.  I reminded her he doesn't even like to go to BiMart (an hour away) without her!  She said she knew that was true, and she cried, she said I was the only one who had shown any concern for him.  This is what brothers and sisters are for.  We're family.  We have to get through this somehow.

I haven't told the rest of my family about her suicidal feelings.  Polly is way too anxious, Mick is distant, Julie not as close to her.  The rest, I figure if they can't even visit her, they wouldn't be overly affected anyway.  Her friends...they're unaware, if she wants to tell them, she can, right now it can stay with me and Bert.  I figure anyone on this forum doesn't know her name anyway so I feel okay sharing with you guys, my other extended family.

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Oh, Kay, I am so sorry that Peggy is going through such a difficult time. I know how close you are to your siblings. You have such a kind heart. I keep you in my prayers and hope for Peggy's recovery. Sending hugs. 

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Now they're requiring that Peggy hire a "livery" as she called it, someone who is a driver for disabled and wheelchair equipped, she doesn't even own a wheelchair yet, she's using one at the facility, to go to the doctor on the 16th, we don't even know where to call!  They also require her house be renovated.  They don't have money to pay for all of this, they will have to make payments on the hospital, rehab, etc.  Bert's business has been closed down most of the month but the expenses continue.  They're feeling overwhelmed.  They make too much money for help and not enough to take care of all of this!  

Not exactly what she needs to know or hear right now.  They put her on suicide watch and then stress her out further?!  That's a big help.  It seems they've done a horrid job of communicating with her about what to expect and where to go for help.  They just keep adding on requirements.  I totally get her wanting to die.  Right now her life is hell.  They are spending about eight hours a day doing PT with her, all of which is in excruciating pain.  She's so tired and sore.  I can only hope that means she'll sleep.  I never wanted any of this for her.  It kind of reminds me of what Polly is going through with Nicole.  Very hard.

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I'm so sorry about all of this, dear Kay. So much to digest.

Does this rehab facility have a social worker or someone who can point your sister to any available resources that could help?

For what it's worth, this page contains a list of some that you might want to check out: Caregiving in Serious Illness: Suggested Resources

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If there is, I don't know who it would be.  Communication throughout this whole ordeal has been horrendous.  The doctors did nothing to prepare her what to expect.  I imagine her husband is overwhelmed, he's never cleaned, cooked, done laundry, paid bills, made phone calls, etc. until now.  She handled all of that but now she's unable to.  

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Kay,

They would probably let her use the wheelchair from the rehab. For Nicole, the rehab at the hospital ordered hers and the one handed walker and had it there before she went home. Yes, Nicole was in excruciating pain with pt in the beginning. It would make me nauseous to watch it. They also had a list of other things that she needed to have before she came home. The biggest thing was a ramp to get her in and out of the house. Thankfully my son-in-law took care of that for me. Financially, I have no clue what to say. I'm kind of in the same situation as far as that goes. 

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Peggy did sound better last night.  They earn too much $ for help but not enough to take care of all of these extra expenses.  He hasn't had his store open all month as he's been driving the hour trip in to be with her during the day and hour back at night.  It's a good thing because she needs the support and the set of ears and remembering brain, her's has been gone lately, but I told her last night it sounds like some clarity is returning.  They put a pain patch on her to help with the pain so today should go better.  They gave her a list of places to call to arrange for transportation to the doctor, who knows what that'll cost.  It'll make a taxicab look cheap, I'm sure!

Peggy has had zero exercise all her life so eight hours a day of this grueling taxing rigorous therapy is exhausting and she's sore from the workouts, but it's her ticket back home so she's giving it her best.  A lot from an out of shape broken 74 year old!  Hell, it'd be taxing on ME and I'm active!

Nicole had so many breaks, I can't imagine.  Every part of her must hurt.  I pray for you guys every day.  This time can't pass soon enough to get through to the other side of this!

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  • 2 weeks later...

So I thought Peggy was doing better, might even make it.  Last night I found out everything she told me about what her doctor said was in fact the opposite.  She had a bad reaction to the bandaging on her back so he put her on antibiotics and she's been throwing up ever since...which means not only her food, but her medicines.  Which means she could have a heart attack or other episode and it means the antibiotics also are not staying down.  She's very stubborn and won't contact her doctor and I'm not sure how much the place she is at puts two and two together...her words, not mine.  Her and her husband choose to handle things themselves, which in turn means to me...to butt out.  But I'm very concerned about her.  She sounded weak last night, probably as a result of the vomiting for the last three and a half days.

Honestly, I just don't see how this can continue, it seems to me she'd do better in the hospital where they could give her IV.  She has a doctor's appointment Thursday and I hope he can see what's going on.  She's wasting away before our eyes.

Last night's news was very disheartening to me, I can't sleep, I feel sick to my stomach.  I just don't want to stand by and watch her die, little by little.  And I feel helpless.

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I'm so sorry, Kay. I know it hurts so much when we have so little control over the behavior of those we love, especially when we see what could or should be done differently and our wise advice lands on deaf ears. Frustrating beyond measure. :(

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Not looking good right now, it's unlikely she'll ever return to her life at home as it was.  She fell today doing her PT, hit her head, they're monitoring her every 15 minutes.  So hard to watch what her life has become.  Very very hard.

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Kay, Thinking of you during this horrendous and difficult time. Wish Peggy and hubby would not shut you out. Doubly troubling that the residence center let her fall during PT.

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Peggy is scheduled to come home Thursday and that makes me very nervous!  Her and her husband refuse our offer of a ramp.  If she decides to smoke, she'll end up back on oxygen and won't be able to smoke in the house.  That means she'll make treks up and down the front porch steps and with or without the walker is dangerous.  I know her husband will leave her home alone to go back and open his store, which he's had to close for the last month and it terrifies me.  If she smokes in the house I can't be there, it makes me deathly sick with my allergies and Asthma.  I've talked to her about all this but she is the most willful stubborn person I've ever met.  I guess I have to leave it to them to make their decisions and live with the consequences, but oh God it's so hard!  (Serenity Prayer kick in)

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2 hours ago, kayc said:

I have to leave it to them to make their decisions and live with the consequences, but oh God it's so hard!  (Serenity Prayer kick in)

Yes, Kay, that is exactly what you have to do, and we support you in that choice ~ but we all know that it won't be easy. Prayers for you and your sister Peggy ❤️

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  • 1 month later...

❤️ I can't imagine myself in your place.  I am an only child so I have no real concept of your feelings.  I know you are suffering as much as your sister is and I am sorry for you both.

 I have been told you can't miss what you've never had.  I can tell you that even now, maybe especially now, I miss having the relationship I imagined I could have if I had a sibling.

Thinking of you often Kay. 🙏

 

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It's been a very hard road since May 10...we awaited surgery as if it would be the cure, not knowing that the pain would only get worse, and she'd have to learn to walk and do things all over again, a different way, this time more mindfully.  She wanted to die.  She was diagnosed with dementia, something I've realized she's had going on for years, but I'm hopeful the doctors will address it now.  Her husband is of the mindset that if you don't bring it up, it will go away.  it won't.

It's been hard getting the straight scoop from her because of the dementia...also, perception is everything.  She was at rehab for three weeks, then home.  She hasn't been sleeping because of bladder issues, and they were going to send her to a Urologist, but now she's finally sleeping better, only getting up a couple of times in the night.  Her husband has been taking complete care of her, closing his store and won't reopen until sometime in the Spring.  She took up smoking again so now I can't visit her as she's smoking in her house, I can't be around it with my allergies and Asthma.  I have been able to drop off meals for her, but can only talk to her over the phone.  Her husband has been driving her to the grocery store every morning so she can walk up and down the aisles in her walker, their house is too small to get much exercise, it's 900 square feet with the attached garage included.  I'm hopeful that with enough time she may heal but she won't ever be like she was pre-fall or pre-surgery.  It's hard to watch someone you love go through something like this...also to know that if you went through this, there'd be no one to help you through it.  It makes me think of what Gwen is going through.  All we can do is keep trying our best no matter how upward the struggle is.

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  • 1 month later...

Thank you, Tachi.  I came so very close to losing her, and even was praying if she was just going to suffer, that she go, because life has to have some quality in it, I don't want only pain for her.

She is slowly improving.  I seriously doubt she'll ever be as she was before her May 10 fall, but if she can dress herself, get herself to the bathroom, enjoy reading and reach the point where she can go to lunch with myself or a friend, that is something to work towards.  She's not there yet.  Her husband takes her out every morning walking the aisles of a grocery store with her walker, up and down each aisle three times.  I thought that was a great idea as their house is very small, no room for any meaningful exercise.  The store is less than a mile away and he helps her down the porch and into the van.  He's been able to go to his store, which has been closed for months and open it for 2-4 hours a day and I think that's helpful to them both.  He still has to help her shower.  I don't know if she'll ever improve beyond this, but at least she's not living with the excruciating pain that was relentlessly hers for months.

It really makes you stop and think about how many people suffer like this.  :(

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  • 3 weeks later...

This is something that people dont want to talk about, its not pretty, and its not in their image or lifestyle. Then when it happens they arent prepared. In our society we dont prepare for life, we dont teach about life. And by and large we dont have the sense of community or the ties to really help each other. Very seriously...'There but for the grace of God go I'....you never know. Very gratefull shes beyond that pain. Last Sunday I had something that hurt stomach and abdomen so bad all I could do all day is roll in bed and wonder. Thankfully it went away after a day but yes its scary. It reinforces to me that the heroes of life are the ones who day by day suffer and those who care for them. Partly why I quit watching the whiny stars in Hollywood. They have no idea what is important in life.  My hope and prayer is that she can have some semblance of comfort and enjoyment. Sometimes it really is the little things, that most people take for granted that matter the most. 

 

I also would like to say that on the eve before Thanksgiving I am so very gratefull for you and Marty and this website. I will never forget the comfort and advice you folks provided out of the kindness and compassion of your hearts. Hope you folks have a good Thanksgiving

Take care

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Thank you, Tachi, I hope you have a good one too.  My sister says her pain is greatly improved and only if she twists a bit she starts to get that twinge and stops whatever she's doing, she has a hard time fastening her seatbelt every day, it causes her pain.  Her husband still has to do the laundry and cooking and cleaning.  All she can do is get herself to the bathroom, get herself up and dressed, or get something to eat out of the refrigerator, she can read, watch t.v., talk on the phone, but I remember when she couldn't even do that, so this is a marked improvement.

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thats really a blessing she can do all that, mobility is important. 

dad has been having trouble with sleep since his stroke. My big brother got him a little DOT which I set up. last night he had it run 'ambient sound babbling brook' while he slept and he said it helped. Of course he takes his hearing aids out at night so the brook was full volume. It sounded something like a toilet flushing to me but whatever helps. 

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Pardon my ignorance but what is a DOT? I only know it as Dept. of Transportation.  :)  Is it a breathing machine?  Well it's white noise, maybe he'll get used to it and it'll help him sleep.

I have two heavy duty air filtration systems in my house because of my allergies and Asthma, and they make noise but it drowns out other noises and helps me sleep.  Except one of them makes a popping gurgling noise, it started a couple of years ago and of course the company doesn't want to do anything about it because it still works, but I cannot sleep in the same room as it is so I have the other one near where I sleep.

 

 

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Lol sorry, a DOT is a small round device from Amazon that has the Alexa assistant built in. If you've never seen the Alexa it is tied to your amazon account. It can do many things for you like play songs, answer questions,  order things on amazon. Its the first wave of the wired technology home. Remember the Jetsons? I think one day alot of that will be true. You can even talk thru it to someone you know who has one. It has a female voice, very good manners but is limited by her programming, definitely has potential. he says the babbling Brook really works so good for him.

It's rather sad how so many companies go away from customer service. Thats an archaic view and one many large companies take on their own equipment...if it runs don't worry about it. At least you found a way to make things work. I have to have my white noise too, and feel a slight breeze from that fan, love cool weather so a cool room is a must. 

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