Caring for a Spouse
Welcome to this online support group for spousal caregivers! Please introduce yourself - Ask for advice - Share your experiences caring for your husband, wife or partner. Talk about ailments and treatments, caregiving and relationship challenges, daily life, your tips for others. Vent, laugh, and come back to this online support group as often as you need to feel less alone. Some featured conversations to help you get started...
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What's New Today
Mike Simpson said...
about 1 hour ago
Soooo close. The Administrator where my wife is at said it's not unrealistic to expect my wife home by the end of the year as she is improving so fast. They are supposed to place a plug today and if all goes well, she'll be off the trach by next week sometime. I've committed myself to making 2 trips a week now which is about 20 hours driving total per week but if it lifts her spirits than so be it. She has a phone so we can do video chats as well. Only problem there is she calls constantly and I have no time for laundry, dishes, eating, or dealing with legal issues I need to attend to. But, There's a light at the end of the tunnel and she'll be home soon
about 1 hour ago
My husband is possibly declining. Actually, there is no possibly about it. Maybe I’m the one in denial. He keeps saying that he’s getting weaker and I know that a yes but I just want to believe that he have more time left then what he may think. Back in September I took a class at a local university and it’s about to end in two weeks. My plan was to register for another class in January but now I’m wondering if maybe I shouldn’t considering it’s helpful for getting worse. Or should I play it by ear . By the way the campus I go to if I have my job so by the time I get home it doesn’t really appear but I’m taking a clan because of the time but the cloud feel during the day. On another note we are scheduled for a house with a valuation well Friday. He wants to go to a Facility but I think we can manage with care at home. I know he scared about it and I am too but I just want to see would help if available for him, Specifically for our situation.
2 days ago
This week will be a potentially busy and stressful one for many of us, with the holidays looming while we juggle family, work, caregiving, etc. I was thinking about LAJ2012's random act of self-kindness the other day, which I thought was terrific, and wanted to issue a 'challenge' of sorts for all of us here to do at least 1 thing (no matter how small) for ourselves between now and Friday. Can be anything at all, as long as the intent is to be kind to ourselves. Feel free to share your RASK (random act of self-kindness) here! :)
3 days ago
NEED AN ANSWER TO THIS QUESTION-- 1) Do your husband's social security payments now go to a nursing home if your husband is put in a nursing home?
2) If your husband is in the V A hospital for over 30 days, will the social security payments now have to go to the V A hospital?
3) Is it the reason caregivers prefer keeping their spouse in the home because of no interruption in the payments?
My husband's health is getting worse and these are concerns I have when or if I have to make the decision of placing him in a nursing home. Thanks to all who respond.
4 days ago
Well I did a good thing for myself just now. My husband's family is having a get together and was kind of blasé about me going with him. After I considered the morning that I'd already had--up at 7am to take my son to take a test for high school, meeting with my web designer, grocery shopping--I figured I'd done enough for today outside of the house. I also figured my time would be better spent enjoying some quiet in the house while he spends time with his family. Besides if I went with him that would have ben more anxiety and frustration and unrest for me. First, I'd have to deal with his driving. Then his attitude wasn't very pleasant. And I have plenty to do at home So I let him go by himself. I couldn't help but think of all my family events that he has no problem skipping out on. I'm proud of myself for putting me first.
5 days ago
Bill came home from Rehab on Wednesday and he still has the UTI. It returned a few days after the IV meds were stopped. He is currently on Levoquin 750 mg 1X a day. He is still so weak and no one seems to know what is causing it. He is also confused at times as well. I feel like the antibiotics have played a role in the added weakness and confusion. It has been so hard. I have had to increase the Caregiver hours back to 12 hours a day. This has been very discouraging to have to do this after he had been doing so well for so long. It has been a real difficult pill for me to swallow this time around. Somehow last year when we initially had the live in caregiver, it was not as difficult mentally as it is on me now. That is probably because we were told at that time that he was terminal, but then he made such a turnaround and eventually came off of hospice and did great until July when the tumor had returned and he had to have another surgery. It has been a gradual downhill spiral since then. First he started experiencing extreme Fatigue (sleeping 14-16 hours a day), and MS exasperation, IV sterioids to treat the MS Flare up. Upon completion of the IV steroid treatment, he began having shortness of breath and periods of tachycardia, and he was snoring, moning, groneing and talking in his sleep. He went for a sleep study and tested positive for extreme sleep apnea. It has been a nightmare getting all of the paperwork submitted for Medicare to approve the BIPAP machine he needed. It took almost 3 weeks, but he finally got the machine on Wednesday when he came home from rehab.
He has been in the hospital 4 times since July and rehab 3 times. All of this has taken such a toll on his poor body and he is really weak. Additionally we stared working with an Endocrinologist to wean him from the steroids he has been on for so long and found out that he has hypopitituarism which was caused by the radiation for his brain tumor two years ago. So now he needs to take thyroid supplement daily as well as Testosterone shots every two weeks. Additionally, the Endocrinologist also said he also has steroid induced diabetes as well, so now in addition to everything else, I have to test his blood sugar 2 times a day. I am feeling so overwhelmed by everything, I just want to disappear.
Additionally now the Infectious disease doctor wants him to see a urologist because of the two UTI infections. It's just one thing after another. He now has a primary care doctor, an infectious disease doctor, a neurologist, a neurosurgeon, a cardiologist, an endocrinologist and now a urologist. They all want me to schedule follow up appointments with them, but it is all so overwhelming that I cannot follow up with all of them right now as dragging him in and out of the doctors offices is not only extremely taxing, but it also exposes him to more germs and makes him more susceptible to infection. Therefore, since I need to prioritize which doctor to go to first and also since his last MRI was stable, I have decided at this point to put the Neurologist an Neurosurgeon follow ups on hold for a few months and work with the endocrinologist on the steroid weaning as well as the urologist on the uti infections and continue to follow with the cardiologist on the tachycardia.
I am feeling anxious about what the future holds for us. He is back to needing help with everything he does. I do not want to go the nursing home route as I feel like that would be much more stressful for me having to be sure that he would get the care he needed, and he is not eligible for hospice as he is not terminal. I hope I a doing the right thing, but all I can do is hope and pray at this point that things improve, or that he will die peacefully in his sleep.
5 days ago
I’m struggling. This week has been stressful, with multiple doctors’ appointments to get my husband to (one of which was very rough and we got there only to be told that the doctor couldn’t do the test after all!), numerous calls from doctors’ offices back and forth, dealing with his caregivers, trying to coordinate travel with the wheelchair transportation company, juggling calls from our caseworker on our Medicaid waiver application (hopefully some good news, though—finally), had one morning when my stupid car wouldn’t start; up late last night trying to get bills paid – all while trying to stay on top of a very heavy workload this week at work. Examiners are here, we’re ramping up for a board meeting, I have audit materials that I didn’t realize were due today. Husband has 3 more appointments scheduled over the next two weeks, and I really need to be there for them. I don’t have time!
I am normally a fairly calm, organized person at work, but I’ve been on edge, screwing up and forgetting things this week. My printer isn’t working; my boss has been in a mood. I just feel like one of those old commercials where the lady says, “Calgon, take me away!!!”
I know things could be far, far worse, but today just feels like one of those days when I am about to lose it. :(
6 days ago
I had a very nice, although too rare, evening of clarity with my husband last night. His meds didn't make him foggy and he was the kind and loving person I fell in love with and married. I know how hard he tries every day and the difficulty of dealing with a debilitating illness, so can understand his anger and frustration. I just wish he wouldn't target that toward me, as I've mentioned before. I know he can't help it and to not take it personally, but sometimes that is hard. It just made me feel somewhat refreshed and able to face the situation with a little more energy. I hope all of you dealing with similar personality issues may get a moment like that once in a while, too! Thanks for this site and all of your support!!!
8 days ago
I used to be very beautiful. My annual salary was over $100,000 dollars. I used to live in 4 story home, driving 2 jaguars and lived in a gated community. Now, I look the complete opposite of what I should look like. This is not the life that I intended for me. Income took a big hit in medical bills and traveling to different states seeking a cure and experimental treatments for him. I get around in a rickety old truck full of rust. Yes I am mad when I think of what life could have and should have been for me. I get through the day daydreaming about how my life should have been. I know I used to have beautiful looks because everybody used to tell me that I looked like the singer and I feel that if my life took a different turn not only did I used to look like the singer but I believe I would have been the next Beyoncè. I will always continue to daydream and think about what should have been.
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