my mom is staying with us for lymphoma treatment. she has MZL- aggressive. tried to start her treatment TWICE and both times had reactions and now ended up in the horrible hospital here. im fearful she could get worse things there - like
the FLU or etc. she is 86. she is so strong, but im finding this whole ordeal is making me terribley weak and stupid and my sx are flairing big time.
Posted by Lymetoo (Member # 743) on :
I'm so sorry to hear this, Lisa! I'll keep the two of you in my prayers.
Hang in there.
Posted by hiker53 (Member # 6046) on :
So sorry. I will also pray. It sure is tough when our parents are older.
Posted by Bartenderbonnie (Member # 49177) on :
LisaK
Very sorry to hear about your dear Mom.
You are a good daughter for taking on this care-giver role, especially while you are still recoving from Lyme disease. Our health is so fragile. . . People just don't fully understand the enormity of what we deal with on a daily basis.
I am dealing with something similar. My Mom went to ER 3 weeks ago and finally was able to return home a few days ago. I was appalled to see the nurses go from room to room, patient to patient, and not once did they wash their hands !!!! I went in everyday with Lysol wipes and disinfected everything. Then at rehab, patients went from apparatus to apparatus, but PT's never once wiped down any surface areas ! Horrible ! She was finally released but needs constant care.
Normally, I would be able to deal with whatever comes my way. But it's a whole new ball-game now with Lyme. The stress causes me severe anxiety. I also am experiencing flares of tremors, insomnia, extreme fatigue ,fight or flight mode, and the pain that never goes away.
I packed my suitcase to stay with her. The amount of stuff that I HAVE to have on a daily basis was eye-opening. No wonder we are so tired all the time. It's hard to be me. It's hard to be us. It's so much work !!!
Hopefully your Mom will be released to go home soon. Do you have any other family members or friends that can help give you a break as care-givers ? Can your Mom qualify for home-care visiting nurse for her personal needs ? Maybe contact her social worker with her insurance company to check on her benefit programs ? Maybe look into Meals on Wheels a few days a week to alleviate cooking responsibilities ?
Please take care of yourself. Know your limitations regardless if others don't. We are here for you.
Praying for your Mom and your family through this difficult time.
Posted by LisaK (Member # 41384) on :
thank you friends, my mom got out yesterday and it was a fiasco!
im too tired to talk about it right now, but it was a mess , and yes Bartenderbonnie, it was filthy!!
for 24 hours they kept her there with no reason- kept saying she had pnuemonia, but she absolutely did not. mix up of drs notes, hours and hours of waiting. such a joke of a place.
she went home to my dad (in virginia) for the weekend and the superbowl. I don't know what's giong to become of her now.
she isn't elligable for the lymphoma treatment now.
she coming back to my house on Monday. Im so wiped out. trying to just catch up to my own every day stuff is looking impossible. I can really see how
the stress and sleelessness has cuased my to be very symptomatic.
Posted by randibear (Member # 11290) on :
lisa, I'm so very sorry. is there anything I can do to help?
Posted by aklnwlf (Member # 5960) on :
Lisa, I'm praying too! Going through something similar.
I take dye free liquid diphenhydramine? (Benadryl) to help me at night time along with Melatonin and True Calm both are Now brands.
Posted by Bartenderbonnie (Member # 49177) on :
Today, me and Mom are going to get our blood work done together. Here's a conversation we had when she was laying on a gurney in E.R.
Mom: "You have no idea the amount of pain I am in." Bb; " I know exactly what you are going through."
Mom; "I don't think I can survive this, I can't do this." Bb; " Yes you can do this. You will get better. We will take it one day at a time."
I think God puts us where we are needed and where we can offer help to others in desperate times .Compassion, patience, and words of encouragement are what's needed right now for our Mom's.
Posted by dbpei (Member # 33574) on :
I am so very sorry, Lisa. Being a caregiver to a loved one and having this illness takes so much out of us. I have been there (and still am, unfortunately) as primary caregiver to both my mom and my husband's mom, who are both in their 90's and with some major health issues.
It can be so very draining. I get resentful sometimes that other family members don't take on a bigger role, but it is what it is... I will have no regrets later on.
God bless you for helping your mother and trying to take care of yourself at the same time. There are some good suggestions here. I have started a ritual of gentle yoga stretches at bedtime that really seem to help relieve anxiety and stress.
Sleep is so important, so do what you need to do. Medical marijuana has been a huge help with helping me to return to sleep in the middle of the night. I think it may be also helping me in other ways, so I am going to try to continue using this.
Posted by momindeep (Member # 7618) on :
LisaK...what an ordeal with your beloved mother. I cannot imagine the hardship. I am sorry you are sick and are struggling yourself to keep your head above water. I have compassion for you.
Bartenderbonnie makes an insightful observation about the magnitude of work involved in getting to wellness. I commented to my husband's LLMD wondering how ill people are capable of doing the regiments solo like so many people have to do.
My daughter and now my husband have/had me to do all of the things they needed to get well...and I will ashamedly admit I sometimes complain about it...mostly to myself. I am healthy and yet I feel burdened at times. But I will ALWAYS continue on because I love them so.
Thank you LisaK and Bartenderbonnie for the gentle reminder that others are struggling so much more with loved family members and their own health. I needed that sermon to take a good look at myself.
May the Lord hold you both and your mothers close to His heart.
Posted by LisaK (Member # 41384) on :
hey thanks everyone!! you all have such great things to add that make me feel like I belong to an amazing group of people!!!
my mom is doing much better - after a lymphatic cleanse I talked her into. she was so resistant to the idea but now is singing it's praises like a song bird that just broke out of jail, haha.
knew it would help since I have had 3 so far and they are amazing. (from a nearby health clinic that uses a super dee duper machine (top of the line))
sigh. my mom and I had a hard day today thougha dn as she is feeling better I can be both happy and annoyed now as she is voicing herself much more and back to her normal criticizing of me.
and this means she is feeling much more herself, so it makes me smile inside and a bit more tolerant.
I told my 5 siblings that I need more help and they are trying to pitch in a bit, but it's the day to day little things that can sometimes make it so hard. like a little bird that needs constant feeding.
my house is quickly getting back to more disorganization and mess- just as I was getting to the point of being able to get it fixed back up after a decade or more of crazy mess!
oh well.....
im thankful I still have my mom around to complain about! and I am just trying to stay in the now and onloy think one day at a time.
AND learning how to say "not right now mom". im an easy target to get myself into worn out mode because I love to help people so much
actually my new year's resolution (I never make them but this year I found one that fit!) I am thankfully remembering- to not help unless someone asks me to. I think I just help too much and people see it as trying to control as well as those that take advantage.
im very thankful fo rthis place! thank you again peeps!!!!!!!!!!!!! and thank you for the kind words and prayers Posted by Ann-Ohio (Member # 44364) on :
Yay! for all of you. So glad to be a peep.
Posted by Robin123 (Member # 9197) on :
I think the only way to make it through cancer is to follow the natural treatments for cancer. It's possible to google for those who have fought cancers naturally, including nonHodgkins lymphoma. It takes work, though, and people willing to take the natural care steps.
Posted by LisaK (Member # 41384) on :
Thanks Robin I will tell my mom this.
Mom is now back home with my dad. this has been such a tough time and im glad she is home, but home for them is 5 hours from us. so this causes another type of stress for me.
so much has happened and I can't type it all here because its just too much for me (including a round of chemo that gave her terrible reaction, and more hopspital visits!!!). she's having in home care thru hospice until "things go south". but is refusing the help of an aid and remains very positive and strong
even though there have been several times we were all very scared. and my dad has aged greatly in the past month. hopefully the nicer weather will be good medicine
they need meal prep and the nurse said it would only cost $30 a week but my dad is too cheap to pay it. my heart has been broken so many times over this, but im trying to let go.
how do you all with your own health that makes you weakened to begin with do this kind of thing???? I find myself easily drawn in becasue I cannot work, etc. and therefore am usually the one that goes down there to help more,
but I can't do this like a typical person becasue my sx are getting worse
Posted by Bartenderbonnie (Member # 49177) on :
So good to hear from you Lisa
Sorry about your Mom's struggles, what an extraordinary woman she is.
Just the way she put herself last taking care of her children, it is now time for her children to put themselves last to take care of her.
With Mother's Day arriving, it' time for the siblings to step up to the plate, and reflect all the sacrifices this woman has made and the gifts she has contributed to each of their lives.
Whether they understand or not, you have a serious chronic disease. Set up a flexible schedule for everyone to abide by. Everyone should be involved in this process, what works for each one's lives. If they can't make their allotted scheduled visit, it is up to them to trade days and cover their time slot with others.
During the siblings visits, take a break from reality, disappear in your own cocoon, time away from the stress of care-giver. When my sister comes to visit every other weekend, I'm relieved I don't have to go to Mom's. That doesn't make me heartless, it's just the reality of the situation. I'm sick.
Handle one day at a time. . . Please take care of yourself. You well-being matters too.
Posted by Lymetoo (Member # 743) on :
Hang in there, Lisa. Bonnie has some good advice. Many blessings to your family.
Posted by LisaK (Member # 41384) on :
yes, Bonnie....and lymetoo, thank you!!!
im not confused, but for the lack of a crying Graemlin, I for this one..
My biggest fear was that I wouldn't be there to be with them (her) when they die. I wish I could let it all go, I have come a long way though. its been a valuable experience for sure
Posted by aklnwlf (Member # 5960) on :
Posted by Lymetoo (Member # 743) on :
It's hard. I had always thought I would be there to take care of my dad when he became disabled. It didn't work out that way at all.
I ended up taking care of my mom in her last years thought. I wasn't there when she died either. I was at church.
We can only hope that they go peacefully.
Posted by LisaK (Member # 41384) on :
sigh
my sister told me that my mom tired to drive for the first time in months and hit a tree
it wasn't bad , but still. It could have been a person!! it seems my other sister was encouraging her to do so. my sister who is the eldest is treating this like some 'awakening' and i think she's making bad decisions. oh boy
Posted by randibear (Member # 11290) on :
I've given up on my family. they only contact me when they want something.
im sorry for what you are going through. one family member should not have all the guilt or burden. neither should others put it on them.
living apart from them can be a blessing or a curse.
[ 05-12-2018, 05:49 PM: Message edited by: randibear ]
Posted by LisaK (Member # 41384) on :
so now my MIL is in the hospital! she was caught in the recent tornado right before the gusts started and one strong wind blew the trash can lid into her face adn knocked her on the ground, she
broke 2 areas of her pelvis and also her back. this poor woman has a terrible disease that prevents her marrow from growing, plus bad osteoporosis. so I hope she can survive this! why doesn't life give us a break???
Posted by randibear (Member # 11290) on :
I am so very sorry.
one day a time, hon, one day at a time
Posted by LisaK (Member # 41384) on :
thanks randibear. its always good to get reminders on that. Posted by dbpei (Member # 33574) on :
I bet your MIL feels fortunate to have a DIL like you who cares so much about her well being. I hope things get better for you and your family.
We are going through a rough spell in my family as well. Our elderly mothers depend on me for almost everything. I am their life line.
My mom is in a nearby nursing home on hospice, and in constant pain, unable to even get out of bed and enjoy the few things she does in her life anymore.
My sisters all live out of the area, so, although they all love and care about my mom, I am her advocate and am constantly doing what I can to make her more comfortable. I often get several calls per day from my mother to intervene on her behalf.
It is horrible. I have been praying for God to take her. I don't know why he is allowing her to suffer so much. But I take comfort in knowing that when she passes, I will know I did everything I could to help her.
Posted by Bartenderbonnie (Member # 49177) on :
LisaK
My mouth dropped opened when I read your update. Damn, that's a lot of family sickness to deal with at one time. It's just not fair to deal with so much hardship and sufferring. Life is so hard and anyone who tells you otherwise is lying to you.
The worst thing anyone can say is "LIfe is only what you make of it." You have my permission to punch them in the face.
Prayers to all the daughters and families struggling with these life and death situations. Thank you for Lymenet.
Posted by LisaK (Member # 41384) on :
new update on my Moms! so my mom had some miracle I think!!! her last bloodwork was all normal and hospice told her they couldn't accept her any more! she is thriving again and back to her old ways, so that is a good sign, haha
my MIL is dong better and she is really fighting and hopefully can still have her spleen surg. it is so stressful on my DH (and his 3 sisters) and im trying to stay out of it as that whole situation really stresses me out!
but I will see her when I can and she is really improving. so great to see al this with these 2 old ladies!
Posted by dbpei (Member # 33574) on :
Happy for you, Lisa, that things are improving. A couple of years ago, my mom came off hospice too, after an amazing recovery following kidney failure, 2 strokes, congestive heart failure and pneumonia.
She got very sick again recently, returning to hospice and the last few months have been a living hell for her (and for me to have to see her suffer like this).
She finally passed away a little over a week ago and life is so very different now that she is gone. I miss her dreadfully (pain of losing your mother is so raw), but I am at peace knowing she is no longer suffering.
You will have no regrets down the road, knowing you did what you could to help your moms. God bless.
Posted by Lymetoo (Member # 743) on :
Such great news, Lisa!!!
dbpei .. My sincere condolences on your loss. The loss is really hard to bear. I miss my mom everyday and it's been 13 years now.
God bless.
Posted by LisaK (Member # 41384) on :
dbpei, so sorry!!!!!! aw, sad no matter what.
sorry to all that have lost moms- I know it's a terrible thing.
Posted by Bartenderbonnie (Member # 49177) on :
Great news LisaK More time to cherish your Mom.
dbpei, So sorry to hear about your Mom's passing. It must be very hard to have her gone. So painful. God bless her.
My Mom made remarkable progress. No more cane, driving, shopping. But then she broke 4 more bones in spine from osteoporosis. So back in the hospital, waiting on rehab bed, she's in horrible pain, IV pain meds. So we are starting all over again, damn,
Posted by aklnwlf (Member # 5960) on :
For those who have lost loved ones and those who are caring for them......
Posted by Robin123 (Member # 9197) on :
Re lymphoma, I just watched John Malanca's 2nd Sacred Plant series on medical cannabis. They reported that a cat with lymphoma lived at least 2 years longer than expected when treated with medical cannabis!
I don't know if that's an option for your mom, but there is some serious treatment of people with cancers taking medical cannabis now and doing better.
Posted by LisaK (Member # 41384) on :
yes, the oil works wonders I have seen!!
Posted by LisaK (Member # 41384) on :
sadly my MIL is now talking about her end. she made the mistake of asking a dr his opinion of how long she had left to live and he had no hesitation telling her (after only meeeting her for the first time) that she has only a few months to a year left.
so now she is miserable.
my mom never asked and I think this is one thing that helped her stay ultra positive.
Posted by Lymetoo (Member # 743) on :
So sorry to hear. What doctors tell us can make such an impact.
Posted by Robin123 (Member # 9197) on :
People should not listen to doctors because they have limited options.
I read the above about your MIL. I'm wondering whether she could be a candidate for stem cell injections to help heal her body. The injections do cost, but they also help heal what ails us.
There is a stem cell summit playing now! Go see the announcement in General Support.
Posted by LisaK (Member # 41384) on :
thanks Lymetoo
Robin, you are right about drs. my inlaws are the kinds that hang on a dr's every word, dont question and don't research. she also was treated for lymewth doxy for a month and continues with sx but when I mentioned it she said she can't handle any more. I have heard this said by others as well.
but if they got treatment it will make them feel better, rigth? I think some people like the dying process or to be ill. for whatever reason. what else could explain this phenomenon? stupidity is the only other option, and that of course is a widely spread thing too.
Posted by Bartenderbonnie (Member # 49177) on :
So sorry to hear about your MIL. How is your Mom doing ?
My Mom also has severe osteoporosis. Pharma drugs for this condition are toxic !
My Mom just had emergency hernia operation. She has been complaining since January about lower right abdominal pain. Rehab facility ran tests, all normal. Numerous E.R. visits found nothing. She was sent home each time. Finally Tuesday night another trip to E.R. and the on-call Doctor, who specializes in abdominal surgeries, diagnosised her with "Old Ladies Hernia."
I don't believe they enjoy being sick and my Mom is far more intelligent than she lets on. Caring for her involves every second, very tiring and stressful. My cheerleader speech no longer works. She is fed-up with the errors of the medical system, painful intrusive tests, multiple physician visits who pass her off to the next guy, constant shuffling to hospitals, rehabs, and back home. She has been in constant pain for almost 1 year. She has had enough. She wants to give up. No one would blame her if she did. How much can 1 person take ? For now all we can do is offer the very best care and pray for a good outcome.
Posted by LisaK (Member # 41384) on :
Bonnie, yes! my MIL feels like your mom! and at times I do too! it is hard to be sick! and no drs helping. we must be strong and pray for each other is any capacity- sending positive thoughts and words makes a world of difference, I think.
I hope your mom can find peace. my mom is diong really well. to hell and back she's been. and she is back to her "normal" self which is a pain in the beep, haha. now my dad is going south. probably from the strain of my mom's ordeal. sigh
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