-
Extremely frustrated and hurt
Dick had a rough time last week. He ran fevers every evening, he had several episodes of low blood sugar and he stays up way too late and then is sleepy all day. Each of these affect his ability to stay on track with what he needs to do. I told him last week that his job is to take his insulin on time and to make sure he is well rested. I said that that would make my job easier.
Sunday night he stayed up until 4 and I had to wake him at 6:30 to get ready to be at the Cancer Center by 9:30. He was so sleepy that he could not stay awake and did not even get the essential tasks done. We were 15 minutes late. I had reminded him several times that Monday was a full day with 4 appointments and I wanted him to be rested. I was so angry at his lack of responsibility.
I told him he was sabotaging his goals by not taking care of himself. He translated this to mean he was sabotaging me. i restated the message. Last night when I went to bed at midnight he had his pills set out and his insulin to take. I got up twice to prod him along. Then I fell asleep. I woke up at 4 and he still was not in bed. I told him I am profoundly disappointed.
He is so passive about everything and i am the one who gets anxious about him getting to appointments on time. I feel stressed all the time and is I wonder if he really means what he says when he says he wants to live as long as possible. His behavior says otherwise.
I am at the point of telling him this has to change or I’m done. I feel like he has come up with a new form of emotional abuse.Tearfully, Julie
Volunteer Coordinator
ABLSC -
16 Replies
-
I am up for it, MARGAITA VILLE ON THE FORUM,,,wouldn’t it be nice to get together in person. Julie we will be out your way soon, I will let you know when. Ginger
-
Sure Karen, lets have a pool party and consume Margaritas. We will invite all the caregivers to join us in a Margarita chat room. Julie
Volunteer Coordinator
ABLSC -
Julie,
I want you to know that you are not alone in this caregiver mode…You are doing a fantastic job, and Dick is lucky to have you…and one last thing, can I have a Margarita too? LOL
Karen
Caregiver for my Wonderful Husband Angelo, who has Metastatic Bladder Cancer.Life isn’t about how to survive the storm, but how to dance in the rain.
-
I am more mystified than ever. Dick seemed better yesterday and got lots of rest. This morning he was running a fever and couldn’t tell me the time he last took his pain pills. I checked his blood sugar and that was fine. I can’t give him anything for at least a couple of hours. He is sleeping now. He is on an antibiotic for his lungs so if he has a UTI probably nothing would show up but there is some sign of one.
If he doesn’t wake up by noon I will wake him up and give him some Tylenol then if he is still running a low grade fever.I wish I could adjust my sleep clock so I could be awake at night to monitor the situation but no matter when I go to bed I wake up around 7.
Ginger I wish we could go out together and have a drink. I think I will buy some margarita mix and have one here at home. We have been in your situation regarding appointment times. The last time I phoned before we left the house as we had different times in our appointment calendars.
Volunteer Coordinator
ABLSC -
Julie,
One other thing, he may have his days and nites mixed up too, he would sleep better in bed than the chair, I think he is depressed,,,and if you are overwjelmed you can call caregivers in the Tucson area for some breaks, I had them there for my dad, 4 hour watch, just to be sure there okay if you want to go out for awhile. We caregivers have a big job,,I think he wouldn’t do it on purpose something else is causing it,, depression…maybe,,Ginger
-
Julie,
I have been where you are, I know the hurt you feel. I wish I had an answer for you, maybe he doesn’t feel real well. One Monday we had to go to the Cleveland Clinic, I argued with Gene it was one week later, he said no it was this monday. We left a little late , got stuck in rush hour 7;30 am. He panics, I called the nurse, she said it was next week, by now we were there,I cried all the way home, I was going to the appt about the shot, this was all for him so I was really upset, like at least you could be sure about the date when I am the one who pushed him to get the shot which gives you the sex option .
The point is, we do do do for them, a little consideration for us would be nice….be sure he is just not feeling really bad health wise, and maybe discouraged, I feel for you, if I were there we would go out and have something, whatever your pleasure, margarita, wine whatever..take care and I hope things get better, take a siesta, day of shopping, or not, whatever you like..don’t let it consume you…Ginger -
Rocky, Part of the problem is he has a well established habit of staying up and falling asleep in his chair. And now I’m telling him he has to change a habit. He used to be able to function on a limited amount of sleep now he can’t. He has been responsible for his medications and had a routine established which is now totally messed up.
Thursday I thought he had gotten more sleep as he had a long nap on Wednesday and about 5 hours at night. But he still couldn’t function it looked like he was falling into mini sleeps. I decided not to stress myself about him getting all his meds taken before we left for the hospital. This was his last radiation session and we met with the Doctor. I explained about his behavior and they wrote it off to the pain medication. We brought all his meds with us and he was taking them while we waited to talk to the Dr.
I guess that he really cannot take responsibility when he is so impaired. I sat with him for an hour last night coaching him to take one set of pills. I would get him to agree to take them and then nothing. He is spending the day in bed today. I expect he will be up all night again.
The dilemma of being a caregiver is deciding how much someone is capable of doing. I made an error Monday and Tuesday in my judgement of his ability plus I was short of sleep myself.
i have to practice relaxation techniques when I get so tense. Julie
Volunteer Coordinator
ABLSC -
Julie – I am so sorry to read your posts regarding Dick. I think you have received some good feedback and I really can’t offer any other suggestions. I just wanted to let you know I will keep your situation in prayer and hope that you are able to discuss these issues with Dick’s doctor and get some relief from your stress soon. I can truly relate to the stress of being the caregiver. I seem to be the “worrier” whereas Harry seems to shake off his stress…I loose sleep as he sleeps soundly! Love and prayers,
Margot -
Hi Julie, Is your husband afraid to go to sleep? I don’t know how sick he is but maybe he is afraid of not waking up, have you asked him why he likes to stay up?
My husband during chemo slepted all day and then complained of not being able to sleep at night, duh, as all new Moms know babies got his nights and days mixed up !So I had to make him stay awake more in the day, (talk, talk, talk)
I also started making him more responsable for his meds. Just the easy ones like the pain ones. He didn’t seem to forget those.
I pray that you can get the rest and strength you need, it is such a trying time for you. love to you from Rocky -
Hi Julie,
As a licensed counselor, I can tell you that people are always the hardest on the ones that they are closest too. It makes it a lot worse for the people that are trying to be excellent caregivers. Unfortunately, it is the ones that do the most that get the most garbage from it. I absolutely agree with the others about an anti depressant. Has your husband seen a counselor at all? I know that some men especially can be very resistent but I am sure that he is dealing with a lot of emotions. I always try to think of how hard it is for me (as a daughter) and then multiply that to imagine what he is feeling. It doesn’t make it okay for him to treat you that way but sometimes we also have to choose our battles. As for him not taking his meds, I can imagine how frustrated you are with that. He needs to want to help himself as well and you definitely do not need any extra stress. Please take care of yourself and I will keep you in my prayers….I hope this turns around for you.
xoxo
Melissa -
Cynthia, i would say he probably is depressed. He almost seems apathetic about everything. Irritable and cranky I understand. Doing nothing drives me up the wall. I’m the one on an anti-depressant.
Karen you are right this is juvenile behavior and it has to stop. I want him to make getting to appointments on time his problem not mine.
If I do say so myself he has an excellent caregiver that he is taking advantage of. I won’t permit it anymore.Julie
Volunteer Coordinator
ABLSC -
Julie,
I am so sorry that you are having a rough week…It does happen, especially when you have been running on full power as you have…I suggest sleeping during the day when he does until you get your energy up. You cannot afford for your heath to fail YOU at this point…You can’t help him if you don’t take care of yourself…See if his meds can be adjusted to fit YOUR schedule better…If he wants to stay up all night fine…but at least he will have the meds and you can sleep…Men are stubborn little boys…as long as you do EVERYTHING they will expect you to do EVERYTHING…Have a talk with the Dr about the situation and ask for suggestions…This is a tough road we are on an unfortunately emotional and physical exhaustion are part of this…I wish I could be more possitive, but it is what it is…We just have to tap all available resources.
I am here for you,
Karen
Caregiver for my Wonderful Husband Angelo, who has Metastatic Bladder Cancer.Life isn’t about how to survive the storm, but how to dance in the rain.
-
Julie, Is your husband taking anything for depression and if he is has his medication been look at as effective lately? Some of the things you are saying strongly suggest depression not that I am a medical pro. Also as a diabetic I can tell you that I can be irrational and cranky when my blood surger is low or off.
Remember Dear to take care of yourself!
Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society -
Pat, I’m a retired Social Worker and when I spoke of a new form of emotional abuse I was referring to the types I had seen in my work not at home.
As i understand it Home Health can send in a nurse once a day which doesn’t address the problem my need to get some hours of sleep at night so I can’t stay up and monitor his med taking. When he is rested he can operate well enough. So I think he can do what I’m asking still. He is not doing what he needs to do when he is functioning to stay that way.
I am going to ask for a psychiatric assessment of his functioning because I may be mistaken about his competence. Julie
Volunteer Coordinator
ABLSC -
Don’t fevers and low blood sugars befuddle the brain cells to the point that one cannot be responsible?…I would relate what he’s doing to his doctor and maybe Medicare can send in a nurse several times a week to at least give you a break?
The fact that you said he’s come up with a new form of emotional abuse makes me think he has a history of this when not ill.
Julie…get some emotional help for yourself and certainly relay his patterns to the doctor.
So sorry for your distress……(my father put me through lots of that and i understand how it mentally breaks you down)…….Pat
Log in to reply.