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Nicole-my grief journey

I’m on and island called “One”. Exhausted, stressed, depressed, scared, worried, overwhelmed, hungry, tired, lonely, fearful of losing my mother. Where are the actual actions of those who say “I’ll help you”. “Tell me how I can help”. And I HAVE told them, I DO tell them and I am specific about what is needed and how to help. Little things, bigger things, trying to utilize what I think they would be great at and being considerate of their time and what might be convenient. Yet, nothing but added stress of not getting that help that I and we so desperately need. It’s more hurtful and frustrating to think for a second that “maybe” I’ll have someone to sit with her for an hour while I advocate for her care, or be able to visit the next facility she needs to be at when they push her out of the hospital. Or maybe it would brighten her spirits to see others that care about her. Do they not understand how critical the situation is...seriously...if you see her for even 2 seconds, then you would be able to see things are desperate. I’m feeling like in the most important moments everyone disappears and when they reappear, I am expected to catch them up on what’s happened (even though I’ve already sent information that they didn’t bother to look at or read) to have them say “Well what about? Or “Have you tried?” “Have you thought of?” YES! I have. “Oh, well I didn’t read your email, why don’t you tell me now”. And I want to say...Thanks for stating the obvious and thanks for coming by to tell me about that fantastic lunch you had, or event that you went to, how busy you are and all of the awesome life your living that you’re currently bitching about. No, I’m not going to step out in the hall to catch you up (on the off chance that a doctor or nurse might FINALLY come by, because I’ve been waiting all day and can’t risk it to eat, go to the bathroom or talk to you... to catch you up on that information you didn’t bother to look at. But thanks for calling.  

Ugh... I realize that I sound angry. I am angry. Angry and all of the other emotions that I started this post with. But that makes sense considering the severe stress that I’m under and when I’m alone with no one to talk to about my feelings because everyone’s disappeared and my mom who is my best friend is critical. This is how it feels for me. I know others have felt this way too. Every day I re-start my day with positivity, but there are days where I am just so worn down and depleted and since I can’t get any of the people offering to help give me an hour where I can have a therapy session, it’s me and this post. Thanks for reading and if you are experiencing this kind of thing too, I hope your loved one and you eventually receive the help and love that you need too.

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Dear Nicole,

I really empathize with you. Being the primary caregiver in our parents lives is one of the hardest roles any of us will take on.

It is only normal to be angry and frustrated.

Keep writing and expressing yourself. We all need to find a release from the day to day struggle.

Thinking of you.

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Nicole-my grief journey

Dear Reader,

I can feel your genuine empathy and I thank you for your reply. You’re so right about needing to write, release, share. Also about the hardest role. You and I both know how important it is and I feel that my mom has given me an entire life of love and my chance to show her the same. I read online today about respite care and am going to find out more about it and how it can help me as a caregiver. I came across it while researching SNF’s and at home care for when she eventually leaves LTAC. 

Sending love and positive vibes your way,

Nicole

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reader

Thank you Nicole. I appreciate your kind words.

I'm not sure if mentioned this before but I also found this website AgingCare to have a lot of supports as well for caregivers.

Thank you again, my friend.

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Juliepops

I am in the same situation, my brother and sister both died and just me to look after Mum who is fading everyday (my sisters death being the final straw that broke the camels back)  I have no one to help, my boyfriend killed himself a couple months ago and I can barely look after myself. I wake up suicidal every morning its horrific and I just want help. Everyday I think who can I ring the answer no one.

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Nicole-my grief journey

Juliepops,

sending you a lot of love. Heavy sighs are exiting my body as I try and find words to write back...because...I know the pain and feel the emotions...and my heart is heavy for you. I feel it in the pit of my stomach. To lose everyone you love...and watch the one you love the most decline is excruciating. I want you to know that I care and that you are being thought of. Prayed for. I have ended up losing my mother to her cancer. I’m heartbroken. I’m in a place where it’s more than hard to see my way forward, but I am not going to stop trying, feeling and doing. I hope that you won’t stop either. We don’t know the reasons why the things that happen to us do, but while we are on this earth, we have to try. Whatever “try” means. For me (in this moment), it’s helping whoever I can, even if it’s just by letting them know that there are those of us who have been through the unimaginable and are still here.  Knowing you’re out there, by your reply to my post, was a light going on for me on this island of one. Thank you. You are a strong, courageous individual and I hope you remember that each day when you wake up. 

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SummerS87
On 6/2/2018 at 12:34 AM, GrievingMySibling said:

I’m on and island called “One”. Exhausted, stressed, depressed, scared, worried, overwhelmed, hungry, tired, lonely, fearful of losing my mother. Where are the actual actions of those who say “I’ll help you”. “Tell me how I can help”. And I HAVE told them, I DO tell them and I am specific about what is needed and how to help. Little things, bigger things, trying to utilize what I think they would be great at and being considerate of their time and what might be convenient. Yet, nothing but added stress of not getting that help that I and we so desperately need. It’s more hurtful and frustrating to think for a second that “maybe” I’ll have someone to sit with her for an hour while I advocate for her care, or be able to visit the next facility she needs to be at when they push her out of the hospital. Or maybe it would brighten her spirits to see others that care about her. Do they not understand how critical the situation is...seriously...if you see her for even 2 seconds, then you would be able to see things are desperate. I’m feeling like in the most important moments everyone disappears and when they reappear, I am expected to catch them up on what’s happened (even though I’ve already sent information that they didn’t bother to look at or read) to have them say “Well what about? Or “Have you tried?” “Have you thought of?” YES! I have. “Oh, well I didn’t read your email, why don’t you tell me now”. And I want to say...Thanks for stating the obvious and thanks for coming by to tell me about that fantastic lunch you had, or event that you went to, how busy you are and all of the awesome life your living that you’re currently bitching about. No, I’m not going to step out in the hall to catch you up (on the off chance that a doctor or nurse might FINALLY come by, because I’ve been waiting all day and can’t risk it to eat, go to the bathroom or talk to you... to catch you up on that information you didn’t bother to look at. But thanks for calling.  

Ugh... I realize that I sound angry. I am angry. Angry and all of the other emotions that I started this post with. But that makes sense considering the severe stress that I’m under and when I’m alone with no one to talk to about my feelings because everyone’s disappeared and my mom who is my best friend is critical. This is how it feels for me. I know others have felt this way too. Every day I re-start my day with positivity, but there are days where I am just so worn down and depleted and since I can’t get any of the people offering to help give me an hour where I can have a therapy session, it’s me and this post. Thanks for reading and if you are experiencing this kind of thing too, I hope your loved one and you eventually receive the help and love that you need too.

Nicole,

im so sorry for what you’re going through. I can honestly say I feel your pain. My dad who’s also my best friend suddenly declined overnight and he was overseas and on his way to California to retire for good. I flew with my mom and sister got him stable enough to bring him to the US. End of January we took off and we were out of country until end of February. During this month I lost my dad in my arms almost 3 times. He got a little better. We flew back to US and straight to Florida where my sister lives and straight to the hospital. I watched my dads head being cut and drilled 9 times until June. Found out he has a very rare brain cancer and almost lost him again multiple times. When I left California In January I left my job as an RN and a full time student to get my doctorate degree, left my husband my dog my house and I’m still here in Florida with my dad. 24 hours a day. He was in the hospital until June 21. My mom spent every single night and my sister and I were there 16-17 hours a day because they would t let us stay. We had to watch all the nurses and doctors or else my dad would be gone by now. We chose to fight even though they kept telling us to give up. We didn’t. We’re home now and taking care of him at home. It’s us 4 and my sisters husband in an apartment small place. I sleep in the couch next to him. I don’t sleep at night cause we have to turn him. We do everything. And it takes the 3 of us to take care of him. And I feel like we still need. More people so I know how hard it is. And I know how frustrating it is when you can’t take a few minutes ALONE to just breath. I haven’t done that. And then you hear about people and how they complain about something you can only dream of doing right now. I know how it feels when friends and family don’t come to visit. My dad was a cardiologist until that day he got sick. Everyone went to him for everything. And now no one not even his brothers come visit him. They call but that’s it. Calling and saying meaningless things that only take your time. I miss my husband and just being able to live and most of the time now living a somewhat normal life doesn’t seem possible... I’m angry too. It’s ok for us to be angry. It’s ok for us to feel what feel. It’s scary and sad. It’s idk what word to use to describe this feeling. We’re not only watching our parents suffering but we also have the fear of what’s coming or what can come... and I think that makes it so much harder. During this time we’re also finding out the true color of people we use to think we’re our friends and family...  I’m so sorry for what you’re going through. Again, I know your pain. 

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Nicole-my grief journey
On 8/7/2018 at 12:23 PM, SummerS87 said:

Nicole,

im so sorry for what you’re going through. I can honestly say I feel your pain. My dad who’s also my best friend suddenly declined overnight and he was overseas and on his way to California to retire for good. I flew with my mom and sister got him stable enough to bring him to the US. End of January we took off and we were out of country until end of February. During this month I lost my dad in my arms almost 3 times. He got a little better. We flew back to US and straight to Florida where my sister lives and straight to the hospital. I watched my dads head being cut and drilled 9 times until June. Found out he has a very rare brain cancer and almost lost him again multiple times. When I left California In January I left my job as an RN and a full time student to get my doctorate degree, left my husband my dog my house and I’m still here in Florida with my dad. 24 hours a day. He was in the hospital until June 21. My mom spent every single night and my sister and I were there 16-17 hours a day because they would t let us stay. We had to watch all the nurses and doctors or else my dad would be gone by now. We chose to fight even though they kept telling us to give up. We didn’t. We’re home now and taking care of him at home. It’s us 4 and my sisters husband in an apartment small place. I sleep in the couch next to him. I don’t sleep at night cause we have to turn him. We do everything. And it takes the 3 of us to take care of him. And I feel like we still need. More people so I know how hard it is. And I know how frustrating it is when you can’t take a few minutes ALONE to just breath. I haven’t done that. And then you hear about people and how they complain about something you can only dream of doing right now. I know how it feels when friends and family don’t come to visit. My dad was a cardiologist until that day he got sick. Everyone went to him for everything. And now no one not even his brothers come visit him. They call but that’s it. Calling and saying meaningless things that only take your time. I miss my husband and just being able to live and most of the time now living a somewhat normal life doesn’t seem possible... I’m angry too. It’s ok for us to be angry. It’s ok for us to feel what feel. It’s scary and sad. It’s idk what word to use to describe this feeling. We’re not only watching our parents suffering but we also have the fear of what’s coming or what can come... and I think that makes it so much harder. During this time we’re also finding out the true color of people we use to think we’re our friends and family...  I’m so sorry for what you’re going through. Again, I know your pain. 

SummerS87,

Thank you for sharing with me and everyone on here what you are going through and your experience. SO MUCH of what you have shared has been my experience too. The similarities blow my mind. I slept next to my mom and held onto her arm every night. Without me and my dad being with my mom at the hospital round the clock, we would have lost her sooner. We didn’t have her at home because she had two emergency surgeries and severe wounds from them. We were told get her nutrition up, get her to do pt and get her back to chemo ASAP. So that’s what we were doing (not knowing all the while, chemo was unlikely and she should have been in hospice). As soon as we changed her code list (because they were pushing us), they stopped helping her. If I would have know that was going to happen, we wouldn’t have changed it for another week. Because as soon as we let them know that we wouldn’t want anymore surgeries (because it would be detrimental, wouldn’t extend her life, she had become terminal), they stopped giving her fluids, stopped her feeding tube, stopped meds and she passed less then 24 hours later. I feel she would have lived a little longer (as was her wish to live as long as possible) and we would have been able to get her home to see her yard and be around her things for a few days or a week before she passed, had they continued what we were already doing. However, there was confusion between the staff that last day because the attending Dr hadn’t updated the new attending yet and palliative had gone home for the day and the nurses when back and forth about the notes during the 7pm shift change and couldn’t agree on what to do. Even though I told them what we wanted.

You have set aside your life for him as I did for my mom and it is the right thing. No matter how hard it is. It is a gift to be able to be with them and care for them. A gift to them and to us. A full circle. Being with my mom as she passed onto the next world was heartbreak and also beauty because she wasn’t alone. For the rest of my life I will have zero regrets regarding that part. I held her for hours, kissed her, stroked her hair, played her favorite songs, prayed over her and watched every breath until the last. She brought me into this world and I got to be with her when she left it. Most people don’t get to do that. My heart hurts for you knowing how painful it is to watch your parent get operated on and handling everything on top of that with labs, specialists, sometimes their lack of transparency, sometimes them missing things on that lab work, or in them keeping our parents comfortable with the right meds. I bring this next thing up so that it doesn’t happen to your dad: My mom developed a tailbone pressure ulcer due to lack of care at the second hospital and even though every day I was asking for them to reposition her every two hours, making them aware of her pain and discomfort, pointing it out to wound care and then when they didn’t use a hydrocolloid the pressure ulcer...I did it myself and and demanded better wound care and plastics to come in and change the dressing and debride the wound on the tailbone and the incision site and proper care of her peristomal skin and stoma. Proper use of the wound vac and dressing too. I even ordered better sample products from companies and gave them to the hospital to use because they were using cost effective products as opposed to ones to help her comfort and quality of life. It’s so stressful and it makes me sad that, as their loved ones we can’t just trust that things will be taken care of by the professionals. That we can’t just be their children spending time with them before they pass. I understand hospitals and facilities are short on resources , that they are human and are not psychics able to predict the amount of time or always find the cause of ailments right away...but...(sigh)...I’ll just say and pray that I hope others have a better experience than I have had. My mom deserved the world and to understand what was happening to her. For the doctors and oncologist to NOT tell her what was happening to her, was inexcusable. Instead, I had to explain it to her and my family. For weeks before her death I was trying to find out where her confusion was coming from...I didn’t find out until the day before she passed that her ammonia level/ bilirubin was sky high. Something common that they missed. I also asked for a CT scan for two weeks to see if her cancer was moving at 30mph, 60mph, or like 90mph...We finally got one (to her dismay) on her the day before she passed. It showed that her secondary cancer sight (the liver) was overtaken by the cancer and pressing on her vena cava. Completely black. But, for all those weeks...they were telling me her kidneys and liver were functioning fine! UNBELIEVABLE that way it went down at the end for her and us.  It’s going to take me a long time to find peace with all the medical discrepancies. I keep trying to go back in my mind and remember she is now at peace and no longer suffering. But life is so dark without her. Excruciating with out her. My dad and I are completely lost and doing our best to cope. She was our world. As your dad is yours. He is obviously very special to be loved that much by all of you. What a comfort you are to him. Keep fighting the good fight!

I’m happy for you that you were able to get your dad home. Tell him everything you’ve ever felt and love about him. Hug him, massage his feet or muscles, let him eat what he wants and sleep when he wants. Just enjoy it and taken in every moment you have to remember how special and be grateful .

Hugs to you,

Nicole

Nicold

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Nicole, I may not fully understand everything you are going through, but I do feel your pain. I felt about the same way with my mother. She had 7 children, but I felt responsible. I wish others would have helped more, but it didn’t work out that way. I have no regrets and no wishing I could have done more, and you won’t either because you are literally doing everything you can. I am not angry with my siblings any more. When the time comes, others might have many regrets. Remember, you are doing this for her because of all she did for you. In that respect, it’s not really about them. It’s about you and your mom. At least that’s what helped me with my mother. She passed away in October. I never have to say, “I should have done this or that.” I miss her and her death was so sad for me in spite of all her many health problems—addiction, dementia, extreme eczema, COPD, A-fib, and more. But I don’t have regrets over something I didn’t do. You won’t either. Keep doing what you feel is the right thing. Caregiving is so horribly difficult with someone disabled or helpless. You do what you can, but there will be times you can’t do it. Remember you are doing only what you CAN which is a lot. You still have to figure out a way to take care of yourself, work it into your schedule as much as possible. On the airlines they always say to put an oxygen mask on yourself first, THEN your children. That’s because if something happens to the parent, the child doesn’t have much of a chance. So please love yourself for all the loving things you do. I am not trying to be judgmental, so if this doesn’t seem to apply, disregard what doesn’t work for you.

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