November 22, 2010 at 5:59 pm #44520
I partially agree with you Pam, except should the most important rule for caregivers be “CARE OF THE CAREGIVERS FIRST”? Maybe I’m not understanding what you are saying. A willing care giving role is the most selfless gift one can give to another person. I know there are a lot of people who get thrown into the role and stay angry through the whole process. That wastes so much time, when time is known to be limited.
To me it’s sort of like being a mother. You have to take care of yourself to be a good mom; but if your rule of motherhood is always care for the mother first, what happens to the children.
And yes, I’ve been a caregiver; and the selfish part of me wishes I was the caregiver now and not the patient.November 22, 2010 at 5:13 pm #44519
I cannot stress enough how Teddy lights up when the grand kids come over. However, they are older and do not have to be watched like some 9 year olds.
I know that everyone is different and handles everything different and I would not ever feel that we should all be doing the same thing. I only give suggestions.
Pam, you always express what is on my mind but it does not come out as good as you say it!!!November 22, 2010 at 4:44 pm #44518cherbourgMember
I have to weigh in on this one. It’s not JUST a visit from the grandchild….I think it’s THE RESPONSIBILITY FOR ONE MORE PERSON’S SAFETY AND WELFARE!!!!!…..
What happens if there is an emergency with Tom and Margaret has to leave quickly in the the dead of night? I have to say it seems irresponsible of his parent to not only add to an already stressful situation but not to try and understand the situation.
I’m all for visits and making memories but a caregiver should only have one focus and one primary responsibility! If the 9 year old wants to spend the weekend he should bring a parent with him. Then maybe they would get an inkling of just how hard being a caregiver can be.
Don’t get me wrong, I would give a million dollars for the worst day of caregiving just to be with my Mom one more time. I miss her so much and still ache to have my Mom back with me.
I guess it comes down to what I consider the most important rule for caregivers…..and that is to take CARE OF THE CAREGIVER FIRST!!!!
Hugs to all!
PamNovember 22, 2010 at 4:30 pm #44517
Things that need not be for one person can be things that are very needed for the other.
Lainy, I know you have made all the right decisions for you and Teddy. Problem is, not everyone has a relationship like you and Teddy have.November 22, 2010 at 3:04 pm #44516
Mary, my cheerful and happy is on the outside, I am crying on the inside. I don’t think it does anyone any good if they all think I am down. As far as the Grandchildren staying over night, I think if Margaret is over tired, day visits are best. To be over burdened by things that need not be only adds to our frustration and tiredness, been there done that so now I do just what I really think I can do and that is it. Teddy needs his strength and I need mine so he can have his. And so the world turns…..November 22, 2010 at 2:11 pm #44515marylloydMember
Heck, I’m irritable, crabby and grouchy today and I just have a bad cold! I can’t imagine how I’d be if I was going through what your Tom, my Tom ,Kathy and others do!! Four weekends in a row may be too much for the grandkids but I can’t think of anything that makes my Tom happier than to have all the kids around. That was the one thing that upset him the most at diagnosis was that he wouldn’t see his grandkids grow up. So I actually wish ours were around more. Try to relax Margaret and just enjoy the time you have together. Everytime I get frustrated with Tom or angry about something I just stop and think, now wait a minute, it’s really not a big deal and try to just bite my tongue. None of us are always happy and cheerful (except maybe Lainey!) but you really don’t want to fight !! I would think you will regret that down the road. I know I would. Take care, MaryNovember 22, 2010 at 3:45 am #44514
Margaret, I don’t know if you remember but when Teddy and I came back from Milwaukee I announced that visitors are welcome but no one stays here the Inn is closed and the kitchen is closed. I didn’t do so well on the kitchen but no one has stayed here since June, I could not handle that. I think with Tom as he is now, it’s time for to set some rules. I had even asked my Rabbi, “Who calls the shots now?” He said the Care taker does. Nothing wrong with explaining to the daughter that it just is too much. Good luck on everything.November 22, 2010 at 3:27 am #44513
Being a caregiver is very difficult, and I am sorry you are having a hard time with Tom. I’m seeing this from the “patients” eyes, though. He’s had bile duct cancer for quite awhile now. He’s had problems after problems. He’s lost so much weight. He is not the man he use to be and he knows this better than anyone. The physical toll his body has had to bear would depress anyone. He is probably grieving for the loss of his nephew and his own losses. Does this mean he needs to take antidepressants? I don’t know. Maybe the majority of cancer patients do; and maybe the majority of caregivers do, too.
What was he like before the cancer attacked his body? If he was mean and cranky to you before cc, my thoughts on this would change. I just know my heart would break if my spouse told me he could pack his bags and be gone within the hour, or left me sitting in the dark in my car outside the house for a 1/2 hour.
I do know you’ve been a great support to Tom. You sound like a very strong lady. Please remember I am more understanding of a patient’s bad behavior than others might be. At this point in my life I can feel more of what they feel, rather than what the caregiver feels. It’s so good we have many caregivers on this board who understand what you are going through right now.November 22, 2010 at 2:04 am #44512mlepp0416Member
Thank you Lainy. Yes, I agree that Tom should be on an anti-depressants but he ‘refuses’ to take it. Maybe I’ll have to start sneaking it into his evening malts that he likes so much. But so far I have to add his medication that makes him want to eat, plus his huge Potassium pills and not so sure about adding another medication to that, but I will find a way.
Yes, I do manage to ‘get away’ once in a while. It would be so much easier if I got some support from his two children. The daughter is pretty good, but for the past 4 friday nights, her 9 year old son ‘wants’ to come spend the night at Gma and Papa’s house. That has added to the problem. Under normal circumstances I would not mind, but 4 weekends in a row? The daughter just does not understand that Tom and I need time for us too! Alone, with no grandchildren. I have spoken to her and I know that he will not be coming next friday!
I do have to admit, that this is so frustrating at times. I’d never ‘leave’ him of course, but sometimes I have to show my hand! And I understand his frustration at not being able to do the things he once did, knowing that he has to depend upon me for everything. And then his nephews death I think hit him really close to home.
Lunch with a friend? On Friday when he came home from Chemo and announced that the 9 year old grandson was staying for the weekend, my neighbor (we walk together every morning and evening) and she is my confidant, well, she and I ran away and went out for dinner leaving Tom and Tristian (grandson) home ! So yes, I do get away just not as much as I probably need. We won’t kill each other yet though, even if at times I want to! Ha!
Thanks for listening…..and I’m thinking of a creative way to get that anti-depressant into him !!!! And I have been talking to him today about my role as his wife and caretaker and how having kids around every weekend is making my job harder!
MargaretNovember 22, 2010 at 1:59 am #44511highsmithMember
As the sole caretaker of my dad, I feel for you!! We, **fingers crossed**,start chemo next Monday, so don’t scare me like that! As my dad gets more poor results and mortality stares him in the face, he is more on edge than ever. This from a man who tolerated two fairly adventurous daughters growing up. I agree 100% with Lainy, the lack of breaks wears on me now more than ever. I plot and plan when I go to the market and leave him alone. I talk him into coming with me and then just sitting in a running car while I do errands, so I know I am within sixty seconds of reaching him. My dad is in pretty rough shape, so he cannot storm out, but we certainly take separate ends of the house at times.
I understand his children may not be willing to take this on like you are, but could they come over one night/afternoon a week and do the cooking or whatever help he needs while you go out to dinner/movie/shopping/nails/massage, whatever!! DO it for yourself!!
All that said, convincing Tom, or simply maybe talking with his Onc. and making at least an anti-depressant part of the regime, would be a high priority too. Luckily we have had my dad on Lexapro since his original surgery, before he was able to say “no” to it. We recently consulted a psychiatrist, who specializes in cancer patients, and talked about anxiety meds and what we may need on the horizon. I think the psychiatrist thinks I need it more than may dad, but he was very accommodating of my requests.
StaceyNovember 22, 2010 at 1:09 am #44510
My Dear Margaret, Tom should be on an anti depressent but more than that I am reading between the lines and what I get is that you need a little break. You sound so weary! I know I have been there every so often. Do you get away at all? Like even a lunch with a friend. Here I am directing you when I hate to leave Teddy. I really don’t think he is trying to pull something he is probably just down about everything. Perhaps if you sat with him and quietly told him that it is making it harder for you to be the Care Taker when you feel he is so upset and that it would be best for him and help you as well if he went on medication. He can always go off of it. My heart is with you and keep that strength you have always shown.November 22, 2010 at 12:08 am #4361mlepp0416Member
Has anyone getting the IV Chemo Gezmar and Cisplatin experienced these symptoms? Or is my hubby Tom just being that way because he feels he can? He had chemo on Friday and on Saturday he was just miserable to me. No matter what I did he was unhappy with it. Finally I threw up my hands and told him that I could have my bags packed and be gone within the hour.
He then proceeded to leave the house, stating that he was going up north to the cabin and ‘maybe’ he’d come back or maybe not.
I left him go and proceeded onto my normal Saturday routine of getting the house cleaning done. Was I worried about him? Yes, of course…..but no way was I going after him.
He came home after dark about 5 hours later (Ha, I knew he would) and his daughter and her husband were here. So the son-in-law went outside to talk to him….he was just sitting in his truck…and after about 1/2 hour he came in the house.
I know he is depressed but will not take the prescription for depression, and to add fuel to the fire, his 49 year old nephew just passed away from a massive heart attack. I’m certain that this has made things worse for Tom because it makes him face his own ‘terminal’ diagnosis and it hits pretty close to home.
Today things are much better, he even complimented he on how nice the house looks now that all the cleaning, dusting, vacumning etc. is all done.
Just wondering if this chemo mix has impacted anyone else this way? And why do they have to take out their frustrations on the one they love? Without me he would be in a nursing home because his own children certainly would not take care of him.
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