It was really hard for my MIL to hire overnight help, but the truth was that not getting the sleep she needed made it harder for her to take care of FIL during the day. Even if you only have someone stay a couple nights a week, at least it would allow you to get some quality sleep … which you need.
5 Likes
Well, he slept 12 hours straight last night! I think a week of interrupted hospital sleep wore him out. I slept in 1-2 hour spurts, and could see on the monitor he hadn’t even moved a hand or head. I could faintly hear his snoring at times, so just put in my cheap earplugs and went back to sleep. My sofa is fine for a nap, but don’t want that to be my permanent sleeping location.
He has been in a diaper for months, but if soiled during the night, wants it changed and I don’t blame him.
The kids and I are going to talk about what help I will need going forward as he gets weaker. I have been able to take care of him prior to this hospital stay, with family and friends staying with him when I needed/wanted to get out. Between the confusion and weakness, I am thinking hired help is around the corner, at least several shifts a week. Lately he has had trouble even holding his fork; hoping this is just a setback from the infection and we can strengthen his hand again.
Sorry, didn’t mean to derail the parent thread, but knew those here would understand and offer suggestions. I did start a thread a while ago on spousal caregiving, so can move the conversation back there if better.
You did not derail this thread!!
We are here for all support no matter who
13 Likes
I am so sorry , this is so hard. It’s the logistics of care that become the real giant obstacles and good solutions are elusive.
I agree with your children. Spend the money so both you and your DH can get some good rest while you can. It’s a marathon, not a sprint. It is NOT necessary for you to soldier through 24 hrs a day to qualify as a devoted, loving, and dedicated spouse. Things are likely to get harder, and not as manageable, so get help now while that even applies.
Hugs to you, your family, your husband.
10 Likes
If you can’t find help for the night, perhaps hire somebody who could come in early to tend to husband’s morning needs - enable you to sleep late.
3 Likes
What about a baby monitor? You can view it from your phone. Ditto with a general camera, that will have sound and video. My friend uses her nest camera to watch and talk to her 93 yr old mom.
1 Like
@jym626 You may have missed above; I have been using the baby monitor since he has been in a different bedroom, so 2 months. It has what has allowed me to sleep somewhat comfortably at night, although I have the sound off. Up to going into the hospital last week, he was able to call me if he needed something during the night, and I would head downstairs to help.
The purpose of this thread is to support the caregiver. You are the caregiver so you should post wherever works for YOU!!
You post, we will be there. 
15 Likes
Oh sorry I didn’t see the post upthread. What now doesn’t work with using it?
Can you get him an apple watch that you then tether to his phone (no need for separate phone line- ie no need for the one with the red dot on the stem). Then all he has to do is say “hey siri- call snowball” and it will call you. (yes you’d have to turn siri on again)
1 Like
I know someone who has a set up like that with an Apple watch, but all you have to do is click one of the side buttons on the Apple watch 2 times and it’s configured for the user to call a family member and the user doesn’t have to be able to speak.
3 Likes
didnt know that! Cool!
1 Like
Siri is no longer working for him as he has called the wrong person and 911 in the wee hours of the night, which is why I turned Siri off. Due to confusion and weakness in his hands, he can’t always get to his watch which I do have him wear at night so he can see what time it is.
We played with Caregiver Pagers today with the help of my 5 year old GD! Assuming my husband is able to remember he has it during the night, not only will I be able to hear it, my neighbors might hear it also; it is loud, but I can adjust the volume. 
Tonight will be the first test; I hope when I hear it, it doesn’t scare the 
out of me!
6 Likes
Well, the Pager worked depending on how you look at the results. The one we decided to keep lit up when the button was pressed, so a confirmation that it was activated. It had 58 different tones which I didn’t pay any attention to when ordering. My son was in charge of setting it up and making sure it worked.
The first time last night my husband thought he pressed the button, but didn’t; I happened to see on the monitor, his phone flashlight flashing, so went down to check on him at 10:30. Another notification at 12:30, then 1:15, 2:00, 2:30, and 5:00. Only the first and last did he really need something, the others were confusion. While I wasn’t excited about making the trek downstairs 6 times in one night, I was glad he was able to remember he had the button. In his defense, the IV antibiotics from the hospital, and the infusions at home have done a number on his system.
Hoping tonight we both get some sleep; he only napped for a couple of hours late afternoon, so maybe he will be ready for bed before 10:00.
1 Like
At the end of a week w Mom. Found out that my siblings are taking her sometime in October to activate PF as her POA. I agree that she is in the early part of that grey area – lots of mental fog, confusion over simple things esp. money — but would have liked them all to at least pretend I should be told. Continuing to argue with the long term insurance people about payment for (Dad’s) hospice, it never ends
Found a box of letters. They are cute, but you can’t be saving them forever. We decided to pass the box around thru all the grands and then toss it.
Medicare generally covers hospice care, rather than LTC. Goes her LTC contract mention hospice at all?
The paperwork argument between Medicare and LTC has been all about who paid it first – the hospice itself has not been helpful but now the LTC says they won’t pay unless they have a daily itemized list of charges.
All of this is largely academic as the bill was paid in full at the time and this is all reimbursement – but certainly a cautionary tale in nothing is simple or automatic. LTC approved everything , and now is trying to not pay. Preferred Sibling has called my parents’ lawyer to assist in motivating the LTC.
LTC insurance, like many insurance products, want to limit payout by making filing/reimbursements challenging. I had to jump many hoops to get my disability insurance to pay my claims during cancer treatment and disabled months - they eventually paid, but some maybe would give up pursuing it, which is money in their pocket.
2 Likes
I found persistence eventually paid off with the LTC insurance but our bill was pretty low so at some point it was probably just easier to pay us. But it definitely took calls. I found hospice very cooperative in providing itemized bills (for exclusion period) but I’m sure that varies. Then the insurance overpaid us a small amount and tried to get it back. At which point I realized they’d never refunded the premium paid while my dad was getting services (only the portion for after he died). So I told them we weren’t paying the overage until we got that back - got some runaround but eventually they sent it. So we still ended up ahead - they should have just eaten the overage and they would have come out ahead! I never would have noticed until they got me going through the records again.
2 Likes
I haven’t updated y’all for a few months about my mom. She did have brain surgery in early June to remove a tumor (benign meningioma) growing on her optic nerve and causing her to lose peripheral vision. (When we went for the post surgery appointment the doctor showed us the video of him removing it it was… impressive. 
)
Some of what I thought were her balance issues have been better since then. Overall she seems better than before the surgery. However, she does have several other tumors that the doctors say are probably slow growing (and in places they would not be able to operate). It is possible/likely that those tumors pressing on brain things are what is causing some of her other issues — balance, numbness, hearing loss/difficulty processing language, changed behavior, just for a few.
Also, she had a follow up appointment today. The doctor said it is possible she will still lose vision in the eye that was affected by the tumor they removed. I don’t quite understand why, but in something like 20% of people who have surgery they do eventually lose vision.
So, she is doing okay overall. She has a number of trips planned because there are things she says she wants to do before she can’t do them anymore. 
But she is still needing a bit of support. She doesn’t drive. She struggles with balance if the weather isn’t perfect, and sometimes even when it is, etc.