[momsmyhero]

Riding to the end with my mother (fighting since 2009)

by momsmyhero on Mon Oct 03, 2016 7:19 pm

Don't really know what to say. It's hard being the only caregiver and making life decisions for someone who means so much to you. Days I feel bad because I just don't feel I can do it anymore, but on the other hand I can't allow strangers to take over. I feel like a failure, especially since she's the one going thru it all physically as well as mentally.

She's not ready to die, but blood trans­fusions have gone from every week to the last one 4 days. So with the help of her sister, who raised my mom, we decided after 1 more transfusion we were going to let them discharge us home with hospice. My aunt doesn't live close, but she calls every day and has visited a lot.

One moment it looks like she's doing better, then the next she's out of it. In the last 11 weeks we've had hypercalcemia rapid onset 16.4, blood transfusions every week, congestive heart failure, fluid in lungs, etc. She needs to have her knees replaced, but obviously that's not an option. Shes bed­ridden except for using the side bed toilet, which she needs help with all aspects of doing. Huge fall risk.

It's just so much and I haven't slept more then 1 hour at a time in 3 days as she has a urinary tract infection (UTI) and wants to use the potty every 20 minutes to an hour, no lie. She has depends on, but refuses to use them that way.

Ok, sorry, but had to rant. God forgive me. Bless u all. Thanks.

[TerryH]

Re: Riding to the end with my mother (fighting since 2009)

by TerryH on Mon Oct 03, 2016 8:03 pm

I'm really sorry to hear how tough things are for you and your mom, Stephanie.

Please try to find friends and family who may be able to help both of you. You never know who will be willing to help until you ask. Does your mother have neighbors, or cousins and other family, who might be willing to help you and her out if you just let them know you needed some support? What about your own friends?

I'm sure your mother is grateful for all you are doing. Even though this is a stressful time for yourself, it's even more stressful and frightening for your mother. Try not to let everything that is going om make you forget how scary all of this probably is for your mother, and how much she will appreciate just having her hand held, or being told that you care about her.

I wish you and your mother all the best.

[momsmyhero]

Re: Riding to the end with my mother (fighting since 2009)

by momsmyhero on Mon Oct 03, 2016 9:37 pm

At this time I sleep with my mom and am with her 24/7. As for family we have just none really local. When she was first diagnosed, she was in Indiana. I went up for her CABG. They found it and well I stayed. I'd travel once a month for 2 years back home to Florida, then back up to her. I finally moved her down here to be treated.

Tonight she's gotten worse but doesn't want to go to hospital. She gas a lot of blood in her stool. I told her we will wait til the morning as long as nothing else happens. They only give her 1 month or so, saying she's transfusion resistant. They use to give her 3 to 4 units, now only 1, even though her hemoglobin will be 6.4 or less.

She doesn't know her prognosis or the time she has left. We've decided that with how she is, she would just become too depressed and worry about everyone else and how they're feeling. She's a special lady and a child of God. She thinks this is another hurdle, as we've had many we managed to get over. She at this time still focuses on healing. Not death. I want her to live whatever time she has living as much as she's able to.

Thanks for your kind words. I know we will be back at the hospital, which will make it 11 times in 10 weeks in a row. When we get discharged this time, it'll be hospice at home. My 19 year old son helps as much as he can as he lives with us. She is surrounded by love and laughter and some­one to just listen.

Thanks again.

[Robert]

Re: Riding to the end with my mother (fighting since 2009)

by Robert on Tue Oct 04, 2016 2:37 am

Hi Stephanie,

I want to say that I'm so sorry for what you and your mom are going through. Your mother obviously raised a very compassionate and loving daughter – being with her at this difficult time is the best possible way you can honor her. Take care and try to get some rest if you can. With prayers for comfort, peace, and strength.

[countrygirl]

Re: Riding to the end with my mother (fighting since 2009)

by countrygirl on Tue Oct 04, 2016 11:25 am

I'm so sorry you're going through this, you're in my thoughts and prayers. <3

[momsmyhero]

Re: Riding to the end with my mother (fighting since 2009)

by momsmyhero on Wed Oct 05, 2016 12:32 am

So things went bad last night back at hospital. She has bloody stool. Gastrointestinal bleeding. But because of her current condition she is not a candidate to get it fixed, much less the testing. Her hemoglobin was 4.2.

We signed up with hospice as we all know with her current state there's not much else to be done. They trans­fusioned her with one unit and that's it. With her bleeding, it's not going to keep for long. They will be keeping her in the hospital because of the hurricane then move her back home.

As painful as this is for me, I keep smiling in front of her. She asked for a Xanax (alprazolam) tonight and they told her they'd give her Ativan (lorazepam). She had them call me to see if it was alright. I love her so much and trying to stay strong is so hard, but if it leaves a smile on her face and less fear in her heart, Id do it a million times over. All I want is my mom, but most of all I want is her to have peace.

Thanks again for all your kind words, and any prayers are appreciated.

[barbaramh]

Re: Riding to the end with my mother (fighting since 2009)

by barbaramh on Thu Oct 06, 2016 12:27 am

Dear Stephanie,

You are the daughter that all mothers would wish they had. Obviously you were raised with the unconditional love that you are now giving back to her. Your decision about hospice seems wise, but I also agree with the suggestion of asking any neighbors or church members if they could just stop buy and visit for a bit to give you a break. It seems that you think your mother may not really understand her condition. I would not be so sure about that. In my experience, some very ill people leave that impression so as not to upset their children any more than necessary.

We have found at-home hospice to be a great helper in our family. My husband's twin had pancreatic cancer, and although he had the Whipple surgery, the cancer reappeared with a year. While he was home, his wife was his primary caregiver, but nursing care and information and teaching from the hospice was invaluable to the family. He had a peaceful transition without pain and had been able express to us, his family, that he had a good life with no regrets and was at peace with his future. He was 79 years old when he died.

I'm sure you will follow your heart and your mother's wishes the best you can to be her comfort during these trying times. You have my prayers for you all.

[NStewart]

Re: Riding to the end with my mother (fighting since 2009)

by NStewart on Thu Oct 06, 2016 3:26 pm

This is such a hard time to live through, but with your care and love it can be good for your mother. Hospice is wonderful. They will provide as much help as you need. Ask them if they have any respite services. One of the hospice programs in my city has volunteers who will come to the house for a few hours to be with your loved one and give you a chance to get a break. You don't have to go anywhere if you don't want to, but you can leave the room and get a nap, or whatever.

All the best to you as you go through these final stages with your mother,
Nancy in Phila

[Fer]

Re: Riding to the end with my mother (fighting since 2009)

by Fer on Fri Oct 07, 2016 1:42 pm

My prayers for you and your mom. I hope He is watching over you both in your hours of great need.

Fer xx

[cindylouise]

Re: Riding to the end with my mother (fighting since 2009)

by cindylouise on Sun Oct 09, 2016 9:01 am

I'm so sorry for what you are going thru. There is no easy answers. I echo the comments of finding anyone who can help sit with your mom. May I also suggest that she get a cathater? It would make life easier on both of you. You would both be able to rest more, and the normal risk of infection shouldn't be such a concern at this time. Being able to rest and not feel so overwhelmed would make her remaining time so much better. If she's already been discharged from the hospital, the hospice nurse could insert the catheter. Best wishes for a peaceful time for you both.