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Reply by moderator | modératrice

08 Feb 2013, 7:23 PM

Hi Tracy and Nancy,

How are you doing? I can imagine that while some things are changing there are probably times that it feels that nothing changes -- that you have to keep working (hard) and love and acceptance as Nancy says. You never have to worry that you may be repeating yourselves. We've all experienced how these situations go around in circles and sometimes it just helps to have a place to say Argh!

Have you read this precious piece that eKim shared in the Reflections and Inspiration forum?

Self Love in Times of Great Hurting

He reminds us to love our inner child, something that helps me nurture myself in times when I tend to push my needs aside.

I look forward to hear from you soon.
Colleen

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Reply by worried daughter

10 Feb 2013, 1:40 PM

Hello Again,

On feb 20th I will be in the city as my husband will be having a major surgery, and I will stay at my mom's in the evenings and try to help her as much as I can. I am already stressed about it and wondering if it's playing out like this for a reason. I hate to say this but maybe a higher power will allow her to pass while I am there..otherwise she will be all alone. She is so tiny and every little movement puts her distress..I really do think her heart is going to give out on her . My daughters finally got together and took her out for dinner with one of my grandsons, the other daughter won't allow her sons around mom ( which makes me furious) but she'll have to live with that. My oldest said after that she will attempt to do that with her son every couple of weeks because her words" mom I don't think it will be very long". Thats what I have been trying to tell them... At least one of them is attempting to do the right thing. I am very disappointed in my other daughter but I can't make choices for a 30 yr old woman. Mom has pushed everyone away with nasty/hurtful words but I tell them there is a time in life when you have to be the bigger person and let those things go..it's hard but you gotta do what you gotta do. I hope I can take my own advice while I am with her:) My husband and I have no idea what the outcome of his surgery will be so I will be stressed already...so somehow I will have to change capes on the cab right over from worried wife to concerned daughter...God how do you separate it all one who could die/ one who is dying? Thanks again for listening. I hope you are all doing well!
Hugs Tracy

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Reply by marstin

10 Feb 2013, 5:04 PM

Hi Tracy,

I am so sorry you are carrying such a heavy burden. I'm sure that it is difficult to deal with all that is being thrown at you. I have walked a similar road not so long ago and it can be so overwhelming and confusing. Your daughter reminds me of my stepdaughter who never got to see her dad before he passed away. She was so caught up in her own world that even when he begged her to come and see him, so he could tell her that he was terminal, she never came. It broke his heart. Now, nearly seven months since his passing, my daughters do not want to speak to her yet she seems oblivious to the pain she caused her dad and the rest of us. Possibly your daughter is trying to protect her kids but you have no control at all over this so please don't stress over it, you have enough to deal with right now. Be thankful that at least one of your children are stepping up and letting past pain live where it belongs, in the past.

It is wonderful that you will be able to spend time with your mom. It will bring you such solace in the years to come. Having gone through the pain of losing both my husband and my mom within weeks of each other, it breaks my heart to see someone else go through the emotional rollercoaster of trying to cope with so much uncertainty and fear. What I have found that has kept me moving ahead is to not look at the big picture and just take each moment as it comes. Find those moments that are just for yourself and try to just breathe. It is hard to realize that some events in our lives are just out of our control and we have to accept that we are powerless at these times.

Please let us know how you are doing as things progress. For myself I know that I have found that the support on here has made such a difference to my mental state of mind.

Hugs,
Tracie

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Reply by NatR

12 Feb 2013, 1:19 AM

Dear Tracy, and Dear Tracie,

Two similar names, two ladies propping each other up through the bad times...its really comforting to see your notes to each other...understanding each other, supporting each other.

I was struck by what you said in your note Tracie, that the support on this forum makes such a difference to your mental state of mind.

I was in a chat today about mental health - what it is, how it makes you feel when things go bad...how you can help someone. The common theme of the group chat was....be there, listen...comfort, dont judge, be supportive.

You are doing just what you should for each other.
It makes me feel good to watch people taking care of each other.
Have a good evening...and hope that the rest of the week will go well too.
Sincerely,
NatR

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Reply by worried daughter

12 Feb 2013, 1:30 PM

Hi Tracie,

I am so sorry for what you have been through! Thank you so much for taking time to post a message to me. I try to keep a positive attitude but as you know that is easier said then done. Yes I believe my daughter is trying to protect her children but there are times in life when you need to teach them about life/death, not to fear them..but yes I will allow her to make her own choices and in a selfish way I don't want to fight right now and have no contact with my grandsons as no matter how I feel they make me laugh and smile, bless there little hearts..I tell you I am having a rough time at work this week as my mind is already into next week and all that will go on. A woman came in yesterday and told me she'd rather work with animals as she was a RN and had to clean up people and was disgusted by it...It took every once of strength I had not to rip her a new one:) I used to do Palliative Homecare and loved being able to make things better for the people intrusted to my care..I only stopped because of my Lupus..It made me think my mom was better off stubborn and not going to the hospital because my irish/polish would come out real fast if someone treated her that way...And she would not be welcome around my husband and the personal care I do for him... Hopefully I can make it through the rest of the week without blowing my top..wish me well. And Take Good Care of yourself....

Hugs Tracy

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Reply by marstin

12 Feb 2013, 5:04 PM

Thank you NatR for your kind words. I find that in my life there are so few people that actually understand how difficult this time is and that I must avoid ones like my brother who think they are supporting me by judging my husband and choices he made. It brings me so much pain and anger when I need to try to keep my mind focused on moving forward so I have had to push him away at this time. Here on this forum I find peace and support, the two most important things as we go through this transition.

Tracy, you are such a wise lady to realize that your grandsons are far more important than trying to convice your daughter that she may regret her decision in time.

We were so fortunate with the nurses that came into our home to care for Len. Our main nurse, Pierre, became such a good friend and support system to me. Unfortunately, during Len's illness he went on holidays for a week and everything fell apart. Not that the nurses weren't kind that took his place, just that I'm sure he would have taken on the idiot doctor that came to visit twice. The doctor was so busy showing us her knowledge and was so hell bent on having a DNR signed that she forgot that she was dealing with a family in pain. The first time she visited, she wanted to make sure Len knew that he was dying and that he needed to sign the DNR to make it easier for me. He was depressed for two days after and barely spoke. The second time she came, she was even more agressive in her need to have that paper signed and kept pointing out the signs that he was near the end. Apparently she thought we were idiots. The nurse that was with her was so devastated and just stared at the ground. Len got very angry with the doctor and yelled at her and she looked so indignant. I ended up throwing her out. As she was leaving, she was trying to get me to come outside so that she could plead her case again. What a cold hearted B. He went to bed that day after she left and never got up again. She had taken away his will to keep fighting to stay alive. When Pierre returned a few days later he was shocked at the decline in Len. I told him what had happened and he just shook his head. Len and I were to be legally married on July 15th after 23 years of unwedded bliss and Pierre offered to come and get him dressed for the occasion. He was devastated when he called that morning and I had to tell him that Len had passed away at about 3am just hours before our wedding. So many hearts were broken that day. I still blame the doctor for speeding the process along and still intend to lodge a complaint against her. She should not be working with terminally ill patients and their families.

I hope that you will find your journey with your mom to be a time of love and caring. Just remember to breathe when you find yourself ready to explode and know that you are doing the best that you can. I also hope that all goes well with your husband's surgery and that soon your life will be a little more manageable. I know how difficult it is to have two people you love going through such frightening health issues and the toll that it takes on us. For myself, losing both foundations in my life so close together has made it quite the challenge to keep on going, but I'm still standing although at times I feel so weak. One day at a time, one step at a time. Just remember to take care of yourself.

Hugs to you,
Tracie

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Reply by NiteLad

25 Feb 2013, 6:45 AM

Hi Tracy. Read your post and related to so much you wrote about. I don't have any great words of wisdom, but just wanted to let you know that you are not alone. You don't travel this road by yourself. Sometimes I just don't know how we get through each day, but we just do. Thinking of you and hoping that today, your burden is not so heavy.

Peace..... Nite

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Reply by worried daughter

20 Apr 2013, 1:08 PM

Hello Everyone,

On a positive note my husband came through his surgery but has a long way to go yet, but he is home and thats very,very good

. As for my mom, the time I spent with her while larry was in the hospital was good but very sad. I don't think I will ever forget her little voice saying as I was leaving "I will miss you" just as I was closing the door..major shot to the heart. I talk to her everyday and the conversations are shorter and shorter because she can't talk for very long. My oldest daughter goes every week to get food and whatever else mom may want and every visit rips her apart and I just want to hold her and tell her everything will be okay but that would be a lie and I realize this is a reality of life that she will see over and over again. Just one more thing I can't fix! My mom seems to be going down hill more everyday and i wish she would go to a hospital where she could be made more comfortable but she made me promise that I would not do that to her. I believe it keeping promises but damn this is getting very difficult.... She won't come here and I can't stay there as I need to work. I can get time off with no pay but that is for when you feel the time is near and I have felt that for a year now! The funny thing about my family is almost everyone has died just prior to thier birthdays. My moms is on may 10th. I am just rambling now as I do much these days...really I just want to put on my pj's and sit in a dark room and cry but I don't have time to do that because I have to be strong and I really don't know what to do, which way to turn, how to make everything easier on my family! And now to top it all off I think my dog is going to die very soon, wow really ..I grew up being told by my grandparents that God does not give you more than you can handle...Can I just put my hand up and say " hey big guy I'm at my limit". I keep asking that my mom just goes to sleep and passes peacefully but nooo instead she is sitting there fighting for every damn breath she takes and trying to pretend that tomorrow she will be fine. Thanks for listening. hugs to all walking this road. Tracy

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Reply by NatR

20 Apr 2013, 3:57 PM

Dear Tracy,

my heart goes out to you after reading your words.
there doesn't seem to be any justice for the families supporting those who are so sick and even dying.

i agree - I don't like that phrase either - about not being given more than you can handle - its nit very realistic!
we all have times that we are stretched to our max, and being told this will pass, or that it will somehow strengthen us, well it's not going to work!

we all have different beliefs and I applaud those who can find extra energy, patience , love and compassion and keep on doing it - but we all are different and it is not failure to say - I have had enough! I have no more to give!

This forum is a great place to air thoughts and get feedback and even ideas and support!
hang in there - you are not alone
i am sad that your dog is also not doing well, it seems like everything is working against you - but be encouraged - you will get through this - but today it doesn't feel like it

the fact that your husband made it through the surgery is awesome.
thr rest of your story about a doctor who treated you both like children and with little respect - well, I understand that too. I have seen people like that - it still seems to me that empathy and compassion are things that either you have or you don't !

they say it can be learned - empathy, sympathy, compassion - but I still don't quite believe that :) it's my personal opinion of course and I am aware there are exceptions to every rule - but my thoughts are going to you today

you have been dealing with a lot. It's okay to express it

best wishes and a cyber hug
NatR ;)

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Reply by marstin

20 Apr 2013, 7:40 PM

Hi Tracy,

It's good to hear that your husbands surgery is behind you and that he is healing. It's funny that you mention about everyone in your family passing away just before their birthdays. In our family, my dad passed away the day before my brother's birthday and my mom passed away the day before my niece's birthday.

As for your mom's wishes, the time may be coming when you can't carry that any further. I know with Len that his desire was to pass away at home and he was able to but I also knew that if it grew too huge for me, that I would put him into hospice care. Do you have nurses and home care available to you? Sometime's our loved ones put high expectations on us without thinking of the impact it has on us the caregivers. I know that when my mom was passing she also wanted to get home from the hospital. The best that we could do for her was to manage to get her into a wheelchair and out into the sunshine for a hour. We could have possibly taken her home but having just weeks before been down this road with Len, I knew how difficult it would be and was unsure that she would even survive the trip home. I know my brother feels guilt that he didn't make it happen but guilt serves no purpose except to make you feel even worse. Maybe you should try revisiting this with your mom if you haven't yet and be gently honest with her.

Yes, I know that 'saying' and have had many moments when I say 'Seriously?'. Maybe the fact that I am still standing is proof of that but I don't understand why it sometimes has to be so painful and such a heavy load. I know that even though Len's been gone 9 months and mom nearly 7 months, the amount of pressure on me to do so many things has not gotten much better. I have had days when I am borderline suicidal (I doubt that I would ever do it) and yet can wake up the next day ready to take up the fight again. It is exhausting. Yes, throw your hands up in the air and yell "I surrender! Please help me with this load'. If nothing else you will have released some of your pent up pain and anger. I find this helps me when I become totally overwhelmed.

Venting is great so please keep coming back and sharing your load. Those of us who have walked this road, whether it be a family member, a hospice or palliative care member or otherwise, we will be here to give you support.

Hugs,
Tracie

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