November 23, 2010 at 6:10 pm #44535lisaMember
With three adult children living with me at home I am still the parent and caregiver as well as the patient. I am sick and tired of worried about bills. I am ending up supporting the three children because one is in college and makes enough to buy her clothes and books, and the other two have crap jobs that barely pay for the gas to get to work. And they are planning a wedding.
So my grumpiness comes out when I am frustrated at the sight of the prospective bride and groom sitting around at all hours on the computer and on the tv. I know it’s a terrible economy and I know they are applying for other jobs, but it seems like no one is hiring. So it’s bad for everyone who is not fortunate enought to have a full time job.
My financial situation would be more bearable if I wasn’t stuck with a mortgage and insurance payments that take up 60 percent of my income. It tried to sell my house, but at the worst time, so no one was buying. I feel foolish sometimes for paying my mortgage on what little income I have – with no prospects that it will improve – while people are not paying their mortgage, living in their house, or just walking away. But the kids, pets, and I need a place to live.
So on top of bills, kids, a wedding, throw on terminal cancer and treatments. low energy and occasional pain, you can see why I do get a little frustrated at times. Usually not, because I know I can depend on the Lord for all my needs. But we still have to deal with real people that we live with and that can be challenging.November 23, 2010 at 3:55 pm #44534marylloydMember
I truly understand what you are going through. We do farming that requires a lot of phsical activity during our busy times and Tom was sick during most of those busy times last year! It really takes a toll on you physically and emotionally to be so tired and stressed. The great part about Tom is he gets well again and is able to take over right about the time I give out! I have to admit that we had a spat last night at 2am because I couldn’t sleep in bed due to my cold. I came down to sleep in the living room on our recliner and he was down here watching TV so I chased him out to bed! He is very possessive of the TV remote and mumbled something about me just wanting it and not acknowledging that I felt terrible and couldn’t sleep. I just told him to grow up and go to bed. I’ve been kind of upset since because like you I take on a lot when he is sick, besides just taking care of his needs and he’s a lousy caregiver when I’m sick.I need knee surgery and my biggest fear is that I won’t be able to depend on him helping me. Having a cold is one thing but being physically incapacitated scares the heck out of me. Anyway just hang in there and start delegating some of those chores out to all those people you have hanging around. Every time I have an able bodied young man around I grab him to do a chore for us, lifting something, whatever. You’ll be amazed at how many fewer visitors you have if you put them to work every time they show up! Ha! Take care and happy Thanksgiving! MaryNovember 23, 2010 at 3:24 pm #44533kathybMember
I love your title, “A Funny Thing Happened on the Way to Heaven.”
You gave great suggestions on how to deal with everything a caregiver or patient has to deal with. Posting on a board brings responses, which we usually want.November 23, 2010 at 3:06 pm #44532sunshinecaregiverMember
Everyone, We all deal…good, bad, whatever caretakers take the situation on and DO! Sometimes in retrospect, I see where I would have done differently and sometimes I say to myself, “Why did you do that?” and sometimes I just smile and get on my computer and go to the cc website and read. Sometimes I go on the computer and I have a special diary that I write all of the funny or awkward things that have happened and I have given the diary the name of “A Funny Thing Happened on the Way to Heaven”. I go back and read some of the crazy, funny, aggravating things that have happened and I laugh or cry and it gives me a release and it NEVER talks back or judges me or gets angry at my mistakes. I think it is quite therapy I need. You might want to try it. I hope this helps someone.November 23, 2010 at 2:11 pm #44531kathybMember
I highly regard how you put “out of respect for THAT man”. You are a very compassionate person to all who deal with this.
KathyNovember 23, 2010 at 7:01 am #44530slittle1127Member
Dear Margaret – My husband has been quite grouchy since he got cancer, which was a significant period of time before he was diagnosed. For 2 years I have lived with the shadow of my husband. It has been hard. Especially since I was accustomed to being his princess and he was always in my corner. Now I have to remind him periodically that we are on the same team and that I love him. I am not the enemy. He is so angry that he won’t see his grandchildren grow up. He is angry that at 58 we won’t grow old together. He is scared that he doesn’t know how the end will be and if he will have courage. So much is going through his mind that he has no ability to see anyone else’s point of view or see the impact of this awful disease on the rest of our family, including me. I have been fairly patient and often loving. There are times that I take a day off – I go to lunch or I go shopping or both. I have to take the break and do things I want to do. I pretend that I don’t think of him every minute while I am away, but the truth is, I never stop thinking about him and yes, worrying. This disease is a thief for many of us -it robs us of the long life we hoped for, the dreams we will not see fulfilled, the freedom to do the things we would like to do and so much more. I have to continue to depend on God to get me through the days and know that I can garner enough strength to see my husband through the most difficult days of his entire life. My children and I believe that CC has taken from us the man we have known and loved, but out of respect for THAT man, we love what is left in the physical body for as long as God leaves him in our care. May you take strength and comfort from others on this site who really care about the struggle you are having and understand how difficult these roller coaster days are. Keep posting and get those feelings out of your body and onto paper or email or verbally or through physical activity – whatever works for you. Get the feelings out so they don’t rot inside. It’s tough, but you can do it. Blessings, Susan. Oh yeah, after you do all of that – have a cookie for me and for you.November 23, 2010 at 2:18 am #44529
and, by the way, I did put the anti-depressant into his malt tonight! He didn’t finish the entire malt, but at least he got a little of it into his system. He’ll get more tomorrow night!
LOLNovember 23, 2010 at 2:14 am #44528
You all make me laugh!
I know that this was just another bump in the road, but I also think that maybe this may help others out there who are facing similar bumps!
Lainy, In my spare time I take care of Tom’s every need, from helping him shower and dress, making his meals, getting him his meds, etc, driving him to /from doc appts, etc (Tomorrow it’s in for a Blood Tranfusion) but at least there I can sit and read – basically doing nothing while he gets his ‘new’ blood, hopefully from a 25 year old!
Thank heavens for FMLA!
Then I will work a few hours after we are home from the hospital.
Humm, let’s see, carry in the wood for the fireplace (at least 2x a day), reset the furnace and the gas fireplace so they would work after getting the gas line repaired (I did NOT repair the gas line) and all the other chores that go along with being a working housewife. Thank goodness there is no snow on the ground or I’d also be doing the snowblowing! Oh Wait! I have a nephew living here with us and HE can do the snowblowing!!! But I know that sometimes it will fall to me….did I mention laundry, shopping for food, cooking that food, every day something different cause Tom’s taste is way off from what it once was!
Anyway you all know the drill that comes with being a caretaker. It’s a sometimes thankless job but “someone has to do it” and since I married for better or worse, I’m up for the challenge…besides, I know that Tom really deep down appreciates what I do for him every day! And I love him so that’s all that counts, right?
So, go with God and KEEP KICKIN’ THAT cancer!
MargaretNovember 23, 2010 at 12:52 am #44527lainyMember
Cathy…I love your story!November 23, 2010 at 12:49 am #44526jathy1125Participant
Margaret, I am here to say there is no right or wrong behavior with this disease. I was the patient and apparently very difficult at times. I have the most laid back sweet daughter and all that went out the window after a few months of taking care of me, i had never heard such language out of her. My husband and her threatenned to put in a nursing home, which I said OK!! This was just a blurp in all there caretaking and now is told with so much humor! Another “moment” of this disease. Don’t worry about any evilness during this time, you won’t remember it and if you do it will be with love. Just stay focus on whats important and thats waking up to share another day, good or bad. Lots of prayers-CathyNovember 22, 2010 at 11:31 pm #44525marylloydMember
I agree that overnight is too much, ecspecially a whole crew of people. That’s crazy! Day visits are great with the 9 year old- our closest grandson is 6 and it does wear you out. I would limit all visits to day visits and only one grandchild at a time! And no more hunters!!
Lainey you have a great attitude! You help everyone on here with their problems and grief while you are coping so much with your own. You are very special.
I tend to look at all of this more like you. Yes there are times that I get really tired but I try to never make Tom think it’s his fault our lives are turned upside down or guilty for making me take care of him when he’s sick. During my brother’s wife’s illness and eventual death last year he made a comment that says it all. Someone asked him how he does it, taking care of her, working, trying to keep it all together when it was all falling apart badly. He said, “I do it because I said I would.” We all need to remember those vows and be compassionate of our loved ones that are suffering. It’s not easy but they won’t be here with us for forever and we need to make things as pleasant as possible while they are. After they’re gone we’ll have plenty of time for ourselves! It’s the same with our kids, enjoy them while they’re little because they’ll be grown up and gone before you know it! MaryNovember 22, 2010 at 7:49 pm #44524andieMember
My thoughts are with you and Tom as always.
My Dad has had a few grouchy days of late, but only with my Mom. Dad too wants the house and garden done, and Mom has been doing odd jobs that she would never have attempted before. It has been causing arguments between them. Dad is frustrated he has to watch Mom do jobs that he once did, and now wants to do but is not able to do. He is really frustrated with it all. Perhaps Tom is too, and they say you always take it out on the one your closest too.
I feel torn between them as i can see both points of view. Dad at the moment has lost his appetite and Mom never knows what he is going to fancy to eat, she is run ragged up and down the road fetching things he fancies. When I’m not at work I help out as much as I can but it is taking it’s toll on her now.
My son is 9 and as much as he loves visiting his Nan and Grandad I would never ask them to take him overnight. We visit every weekend but both me and my husband are there too. If he doesn’t want to go shopping with us then they have him for 2 hours max but he knows if Grandad wants to rest he must let him. Mom likes having him there as he makes them laugh and takes their minds off things. He helps with little jobs and really looks after my Dad.
I hope Toms mood improves soon.
AndreaNovember 22, 2010 at 7:42 pm #44523lainyMember
OMGOSH Margaret, and what do you do in your spare time??? I thought I was a nut in cleaning and etc but I have to say you are nuttier than me.
PLEASE take more care of yourself. So glad you have set some rules down, now if we can just stick to them. I sure wish we could have met in July, just wasn’t meant to be. Are you making Thanksgiving? Since I work at home I do a few things everyday to get ready. Today I set the table. Tomorrow I start my prep.
Like that word, prep? I watch the cooking channel!November 22, 2010 at 7:20 pm #44522
Thanks everyone for your input….I’m taking all of your suggestions and going to the ‘table’ with them.
Tom was very seldom irratiable, crabby or grouchy prior to his IV Chemo that is why I think that the Chemo has something to do with it.
Cherboug is right in that it can be overwhelming to have even just one more person to care for. And in Wisconsin, the big deer hunt started on Saturday, so it wasn’t just the 9 year old grandson that came over to spend the night, either, it’s just that the 9 year old on top of a Nephew, a Son, another Grandson (11) and a grand-daughter (16) and the nephew that lives with us. So in all, including Tom and I, I had 8 people that I had to cook and clean for not to mention washing all the towels that they used for showers, getting blankets and pillows out for them to use for sleeping, etc.
It was just so over-whelming for me. I work a full 40 hours week, and on Friday night all I want to do is unwind and spend quality time with Tom.
I did lay down some rules this past weekend! Everyone had to pick up after themselves, rinse their dishes and put them in the dishwasher, and they had to leave the bathroom in the same condition that they found it in before they used it.
And yes, there have been times during the night when I DO have to take Tom into the ER, and if that happens, what do I do? I’d have no choice except to take the grandchild with us even if it it 2am! Or, leave the child sleep and call their parents to come get him.
So, from now on I think I want to limit the grandchildren visits to ‘day visits’ only. But part of me thinks that may not work…and yes, Tom does enjoy the grandchildren visits, but he does not have to ‘care’ for them, it falls to me.
I do try to focus on only the things that I can accomplish, and because I thought we had a ‘free’ weekend, my focus was going to be on cleaning the house from end to end, getting ready for the holidays. I did still get all my cleaning done, even with the two extra grandchildren who stayed here while the boys went hunting.
Tom is and has always been my main focus since he has gotten sick. Housework be damned, those dust bunnies will still be there next week. Additionally, I have also been painting the entire house (inside) and perhaps this also adds to my frustration. Tom wanted the house redone for me before he ‘leaves’…..so I’m doing it for him, not for myself. The term ‘burning the candle at both ends’ comes to my mind….
Well, my lunch break is done for the day, so back to work I go.
Thanks for listening!
MargaretNovember 22, 2010 at 6:54 pm #44521cherbourgMember
I should of been clearer in what I meant. My “take care of the caregiver first” means JUST the basics. You have to eat well, sleep whenever you can, let things that aren’t necessary go and guard your own health so you can give 150% to the one you are taking of.
To me by following the “basics” you have more time for making memories and more quality time with your loved one. To me a caregiver that denies themselves the BASICS is not physically, mentally or emotionally equipped to care for the long haul.
Same as with being a Mom.
I actually got this from my Mom as her illness progressed. She would fret if she felt my sister and I were “running ragged” . She was constantly telling us to not try to do everything. She told us to pick our battles. She would watch us like a hawk. Believe me if we weren’t getting enough sleep we would hear about it from her first.
I let soooo many things go when my Mom was sick. I didn’t care if my house was clean or if there were dishes in my sink…I put my efforts into making my Mom’s last months the best they could be. I figured if someone came to my house and had any issues…I’d show them the vacuum, the dust rags and let them clean to their hearts’ content. I figured I would rather have Mom’s home spotless and spend time with her, than try and do everything halfway.
Same as when my kids were little. I decided they would remember the times we made soap bubbles in the sink more than whether or not they could eat off my kitchen floor.
I believe anyone that takes the role of caregiver is more blest than they will ever know. I know in my life it had a tremendous impact on me. I think I’m more patient and more empathetic than I was before. I look more to the things that are truly important like selfless love and family and my faith is deeper and richer than before.
As I said before I would give a million dollars for one more hour with my Mom.
Hugs to all of us on this journey!
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