Dealing With Ill Parents

[Scorp]

Some of you know that i'm private, and yes I post things, but not too many in-depth about my emotions. I just feel the need to today.

Yesterday was yet another bad day for me as my brother and I are watching my mother battle with further health issues. She has been an end-stage renal patient for the last 6 years. The last year has been difficult, but now it's becoming harder with many other factors coming in to play. She's currently experiencing what they thought was dementia, but they're saying it's delirium from the pain she has constantly been in for about 4 weeks now. She's developed 2 abscesses on her vertabrae and one near her aorta, and also a bone infection in her vertabrae and recently she has a bad urinary tract infection. These infections are being treated with an antibiotic and it's going to be required for 9 weeks which will be administered to her during her dialysis treatments (which are every other day). It's been week 4 of this particular situation and no led up with excruciating pain. She's in constant pain day after day and the pain is beyond belief. Now bed ridden and she can't have any type of movement. She was such a strong woman back in the day and to see how she's fading and what shes' been through is very, very hard for me to watch. You play the parent and try to be strong in front of them. But when you see them thrashing with pain and crying like a little kid amongst other horrible things, it's beyond heartbreaking and you wish that you can change places with them in a heartbeat to relieve their pain.

Throughout all of this she has had 3 TIAs, a bleeder from dialysis, fistulas, shunts and a human pin cushion, has fallen 3 years ago and broke her femur in 3 places and uses a walker as her legs. Her arms from all of this look like the size of my thigh. Her arms are purple/black and marked up severly. We're talking about a 68 year old woman who basically is 88 as this disease ages you more than some people realize.

Dialysis is no picnic, you are susceptible to many infections which can be life threatening. Lately, I feel like i'm in limbo watching my mother cry out in pain. She has always had a high tolerance for pain, but now it's so severe it's beginning to make her experience delirium and other things. I never ever thought in a million years something like this would happen to such a strong, vibrant person. There she lys in a diaper, tubes now in her. My mother, once a pilar of strength for everyone, it's unimaginable.

Life has not been pleasant with all of this and I'm deeply affected believe it or not. It seems to be one thing after another with her and I wish I could fix it, because that's what I'm used to doing, but with this, I can't. I find myself praying to God asking if she needs to continue like this to please just take her so she will be at peace once and for all.

No one, should ever have to suffer like this with whatever health issues they are experiencing. My heart hurts and I'm very sad and it's been a major emotional rollercoaster for quite some time, but it's getting worse.
I try and keep my sense of humor and go about my everyday business. I have my moments and the last few days have been bad ones. I'm tired, exhausted and sometimes feel empty. Thankfully, I'm able to juggle work with all of this and i'm lucky that they have been supportive. They know my work ethic and know I'm never out of the office unless I need to be. This is one of those times.

We all have to experience this at some point and time in our lives with sick parents. I never thought it would come to this, but it's the reality of it. It's difficult and I just don't know what to say anymore. Mom, I'm scared. I can't imagine you not being here. Even though I feel like I lost you a few years back when this all started, I still can't imagine you not being on this earth one day. I feel as though I'm in limbo. My brother and I have grown closer with all of this. Never thought that would happen, but at this time, that's how it's been. I feel like it's just him and I in our own world with this happening, it's almost surreal.

In her weakened state of mind and in horrific pain she asked the nurse if she knew the "Hail Mary" prayer. The nurse took her hand and they prayed together out loud. I didn't want my mom to see me crying and I had to walk out into the hallway. For me, it was a day of crying and feeling helpless. Trying to be strong and fight back the tears as I took my mother's hand and said it will be okay and the doctors are doing everything to help and get to the bottom of things. Later that day I didn't want to leave her to go home. I wanted to sleep at her bedside and just be there, but they were taking her for more tests and she was delirious in the hallway. My brother and I apologized to the nurses for the outbursts she was having, as that's not my mother's personality at all. They were telling my brother and I to stop apologizing and it's fine and to not feel that way and they totally understand and this is what happens with some folks. These nurses have been wonderful and are amazing.

We finally left the hospital. It's overwhelming and emotions are all over the place. When it's quiet and you're in your own home, you breakdown severely. Today my eyes look like two slits and are swollen. I guess it's going to be a glasses day. I'll be heading back up to the hospital in a little while. I pray she's comfortable today moreso than yesterday.

I'm thankful for my having one of the most wonderful, loving partner's just in general and to console me when I hit rock bottom. I'm thankful for being able to have the freedom to come and go as I please and not be secluded in a hospital room or a rehabilitation place when you are at someone elses mercy. I'm thankful for being able to eat the food/drink that I want. I'm thankful for being able to work and use my mind and have my mobility. I guess I'm just thankful period.

I'm going on and on here and my intent of posting is to NOT expect anyone to sympathize. I'm releasing what my thoughts and feelings through my writing.

Lastly, I'm sure there isn't one household out there that isn't experiencing some sort of difficult subject matter, no matter what it may be.

I just continue to pray for strength.

[Medusa]

Hey Stinger -
I just wanted to offer you a cyber-hug and encourage you to get enough sleep during this time. When I was going through this with my grandmother (I took off work for 4 months to be with her until she passed away and was her primary caregiver), I noticed a propensity to want to be bedside all the time, to the point of not showering, sleeping, or eating properly. This does as much damage to you as it does to them when you arent 100% up to speed.
The best thing you can do is tell her you love her, hold her hand, and be a good advocate for her when she isnt thinking clearly.

My best love to you.
xo

[MrSunshine]

Hey Scorp,

Sorry about your Mom. I am also in end stage renal failure and agree it's no fucking picnic. I've found an alternative to the meds they like to feed you for pain. If you would like more info feel free to pm me. It's not for everyone but it may bring her some relief as it has me.
I hope one way or another she is able to find some pain relief. It's not right to have to suffer or watch someone you love do so.

My deepest sympathy's.

Sunshine

[tuffboi29]

My deepest sypathies about your mother, Scorp.

My Da had been through a prostate cancer scare two years ago.
Now he is suffering from dementia that they are saying will turn into full blown alzhiemer's.
He just isnt the man I once knew.

[PinkieLee]

Scorp...

Oh honey, I am so very sorry for what not only your mother is going through, but the pain your entire family is going through. Like Medusa, I'm sending (((BIG HUGS))), positive thoughts & lots of love your way.

I know the feelings of helplessness have to be overwelming and I wish there was a magic wand to fix this or at least alievate some of the pain for you all. It's times like this, when your friends & loved ones can help hold you up, and keep you sane.

Just know that you have many friends here that are lifting your mother up in prayer. I pray for peace and comfort during this difficult time for you and your family.

Much love,
Tonya

[MsTinkerbelly]

Hello Scorp.

I know your suffering and your Mother’s pain, and until May 22nd when my Mother passed away I WAS you.

My Mother died at 70 years of age from end stage Kidney disease; was on Dialysis, had heart, lung, and other issues too numerous to mention. She finally passed after developing gangrene, a Staph infection, and Liver failure. When the Hospital Hospice people came to us and talked about the end, we were taken unaware by the severity of her illnesses and the suffering she would have to endure to just remain alive. They explained however that because my Mom was on Dialysis, that she had choices in her care. My Mother chose to terminate Dialysis, and passed away on loads of Morphine, free from pain, and with her family and friends at her side. She was strong, brave, and died with the kind of dignity I hope everyone can be allowed to hold on to.

Taking care of her during her last years was the hardest thing I have ever done, and also my greatest blessing. It can however put a physical and emotional strain on you that is so severe you wonder if you can go on.

If you don’t mind I will add you, your Mother and your family to my prayers.

PM me if you need to talk or vent. I don’t personally know you, but I do know what you are experiencing.

Blessings,

Cindy

[Graham]

I know its so hard watching someone you love go thru this, I know the frustration and helpless. GG and I are praying for you and your family.
Like they said please take care of yourself too there buddy.
Graham

[Jesse]

Sending prayers for you and your family Scorp.

[Soon]

Hi Scorp,

I am so sorry to hear of your mother's ill health; I can relate to many of the feelings you and your family are going through.


My dad died of brain cancer a little over ten years ago and, for close to 3 years, watched a healthy man struggle with his diagnosis, operations, a stroke, and finally was brought home to die.

I remember the baby monitor in his room and hearing him moan in a semi-conscious state not knowing if he had enough pain meds or what. Going upstairs and sitting with him and feeling helpless and crying and trying not to because I didn't want him to see me break down. It's traumatic for all family members and can wear you down.

I remember going to work and being in a fog a lot of the times. Work, for me (before and after his death), actually helped me as it kept me busy and on a schedule. After work, I would go sit with him first in the hospital and later at home. I did manage to share with him in a letter -- I am so glad I did this -- all of my thoughts and love for him before he was too far gone to understand.

Remember to go easy on yourself and take some time to take care of your needs to keep you sane and healthy.

Wishing your family comfort in these trying days,

Soon

[Scorp]

All,

Thank you from the bottom of my heart for all the supportive messages in this thread, in private, in reputation points, and via text messages. I'm not a person who usually is loss for words, but a this time I am.

I truly appreciate you sharing your special stories. That meant a lot to me and if I could hug each of you, I would.

Thanks again.

[tuffboi29]

Scorp,

I know this is such a tender subject, so I am hoping the question I would like to ask isn't too much to answer. If it is I understand and apologise from the bottom of my heart.

My question is this...With the loss of my Da's former personality and this emerging new one, I find it increasingly difficult to cope and in some cases understand even though I have done as much research to try too. It doesn't seem to prepare you for the actual experience itself. How are you/what are your coping mechinisims to keep stong while watching the person you once knew slip away?
Like I said I understand if you can't or won't answer it. I'm just grasping for anything to help guide me along as I have never dealt with anything like this before. Any input or advice is more than apprieciated.
Once again...my deepest sympthies...you are in my thought and prayers.

[Gayla]

Hey Scorp -

I've been through something similar with both of my parents. It is, truly, the hardest thing I've ever done yet something that I'm grateful for having experienced. Treasure the moments that you can. Pray hard. And, hold tight to her hand, it's good for you both.

I, also, would encourage you to take extra good care of yourself during this time. It's not selfish.

My thoughts, prayers, woo and white light are with you and your family.

G

[Arwen]

OH honey. I'm glad you have a supportive partner. It's incredibly hard to go through this. You've gotten some great advice about making sure you take care of yourself. I spend two weeks in the hospital with my mother. I mean I lived in her room with her. She was not where your mom is.

It's one of the hardest things I think we can go through--to see the person who represented so much to us deteriorate and know there is not a single damned thing we can do to stop it.

My mom had End Stage Renal Disease as well. They put her on the transplant list only to find that she had inoperable cancer. It's not easy. I totally get your prayers. They are not wrong. Do not blame yourself for those emotions, honey. They are real. They are valid.

Just more hugs in general.

[Unndunn]

My heart goes out to you. I think you've gotten some great advice from people already and all I can do is share what worked for me and what was the hardest when I lost my mother last year. I was her primary caretaker for the last six months of her life and was completely exhausted for most of that time. She had multiple chronic illnesses and was grieving the death of my father who died in 2007. She lost her will to live and my brothers and I struggled on a daily basis with trying to lift her spirits, urging her to eat one more bite, to try getting out of bed, to see at least some beauty and hope in the world. At a certain point I made the transition to just being her advocate, even when I didn't agree with what she wanted. Putting those opposing feelings in separate compartments in my head and heart was difficult. I wanted her to live, she wanted to die and be with my father.

I don't know where your mother is in this process and I'm sure she can't even think about much beyond her pain, but I urge you to focus on two things.

The first is being her advocate-- find out what she wants and make sure that everyone on her medical treatment team knows it. Make sure she gets her pain meds on time, make sure she gets them prior to any planned moves (ie going to have tests done, daily hygiene from nursing staff). Make sure that everyone in your family knows what she wants and are willing to help her or that they respect her enough to not keep her from what she wants and needs. Even if that means that at some point in the future, God forbid, she just wants to die with dignity.

The second thing I hope you and your brother focus on is taking care of yourselves. You need to sleep, take vitamins, become a hand sanitizer freak at the hospital so that you don't catch anything, work out a schedule between friends and family so that everyone who loves her commits to times that they will sit with her and make sure her treatment plan is being followed.

I can't say I know how you feel because everyone's situation is unique. But I do know how I felt and what worked and what didn't. I wish you peace and I wish your mother comfort and freedom from pain.

Unn

[ruthie14]

((((((Scorp))))))) I'll keep you and your Mom in my prayers.
Ruthie

[Medusa]

Daily dose of love for you Scorp. xoxo

[AtlantaButch824]

Scorp I just want you to know you and your family are in my prayers. I experienced the pain of watching my mother die of a brain tumor. I cared for her in my home right up until the day she passed away. I too cried at night. I'm not suggesting you do this, but I knew I could not handle losing her, so I went into counseling and they put me on an antidepressant which enabled me to sleep and work. I want you to know you can private message me anytime. I am more than willing to chat and will even give you my cell number if you want to talk. Take care of yourself and know there are people here who care for you.