Thinking Ahead

Hubs got good news at his followup appointment yesterday, and I can tell he's been feeling better too. And he's gained almost 2 lbs this week. The last month or so hasn't been good before this. His weight kept dropping to about 130, and for someone who's 5'7" that's not nearly enough. His red blood count kept dropping while his blood sugar was slowly stabilizing again. Things finally stabilized enough to go back on the chemo, and after a week, his blood sugar stayed normal and his red blood count went up a lot after the last transfusion. He got another transfusion yesterday as a 'booster' to get him even closer to a normal count. And another good news is that we got one free night at a 5-star hotel in town for this weekend. The only 'problem' is that a major snow storm is due that night too so getting home might be tricky.

We went to Friday night Shabbat dinner at our temple a couple weeks ago and one couple we've known there for a while offered to go out with us shopping or whatever. He'd keep Hubs company while she & I would have  "girls only time" which she freely admits is for me, not for her. It's a great idea, although I have no idea if we'll do it or not.

Hubs and the Rabbi talked and whatever he said (I wasn't there for the conversation) made Hubs feel better/supported/whatever. I mentioned to the Rabbi later that there's a good chance that 2-5 years down the road, Hubs will be gone. He told me that Hubs said 1-2 years, which didn't surprise me. He told me to 'think positively' and hope that they'll find more options, etc, blah blah. The chemo he's on is THE last one available right now, and there's nothing new in studies / research right now (and the oncologist is tops in the field so if something was there, he'd know about it.)

Maybe it's not 'positive' but I think I'm doing right by planning what to do after he's gone.

Where do you see yourself in 5 years?

in college, that was always one of the job interview questions. Maybe it still is, I haven't been on a job interview in a long time. I never had a good answer, it always seemed that the life I had then (school, working full time, engaged) was basically the life I'd have in another 5 years (working full time, married). Not much difference.

Today I'm married to a man with cancer and I really don't like my house.

Where do I see myself in 5 years?
As a widow, and in a house I enjoy coming home to

a week in the hospital

well, technically 1/2 a week, but it felt like a week. The new chemo skyrocketed his blood sugar so he was admitted last Tuesday evening and came home yesterday (Saturday). His parents came in on Wednesday and I went home for about 3 hours. Other than that, I was at the hospital the whole time.

That was not how I expected to spend 3 days of vacation time, but what can you do? I guess I could do a lot. I'm going to get home access to work, so I can use my laptop and at least do some work next time, maybe it'll count as a 1/2 day or something.

There was a woman visiting the patient next door. I saw her a few times and she was obviously upset. One time I walked out of hubby's room and she was just there trying not to cry (I think standing at 'our' doorway was the closest she could be while being out of sight of the patient next door). She had the "oh god, the world just ended, and no one notices" look that I've felt many times. I'm not a huggie type of person, especially with people I don't know,  but I couldn't help it. I walked over to her and said, "I'm sorry, I don't know you, but you look like you need a hug," and I did. She started crying and told me her husband was just diagnosed with cancer and it's terminal. We talked for a few minutes, I doubt I said anything earth-shattering. I saw her again when she was leaving and I gave her another hug.

I hope she'll be ok.

10 tips

I found this in The Resourceful Caregiver book

1. Choose to take charge of your life, and don't let your loved one's illness or disability always take center stage.
2. You deserve some quality time, just for yourself.
3. Watch out for signs of depression, and don't delay in getting professional help when you need it.
4. When people offer to help, accept the offer and suggest specific things that they can do.
5. Educate yourself about your loved one's condition. Information is empowering
6. There's a difference between caring and doing. Be open to technologies and ideas that promote your loved one's independence
7. Trust your instincts. Most of the time they'll lead you in the right direction.
8. Grieve for your losses, and then allow yourself to dream new dreams.
9. Stand up for your rights as a caregiver and a citizen.
10. Seek support from other caregivers. There is great strength in knowing that you are not alone.

Because....

Growing up, "they" said...


     I didn't like sports....because my brother did


     I studied piano....because my friends did


     I read a lot.....because my dad did


Then I got married, and "they" said..


    I got the furniture....because my husband liked it


    I learned to ski....because my husband wanted to


    I went on cruises... because my husband decided to


After my husband's gone, what do I want to do?

Stuff that needs to be changed

Everything.

Too vague I guess.

I want new furniture ....
We have some nice stuff, but it's too big for the room so it looks (and is) too crowded and overpowering. I'm not big into having lots of big parties etc so do I really need/want a dining table big enough for 12 in a room that realistically can only hold a table for 6? Do I need both a large china cabinet and a large entertainment center with display cabinets attached? Do I even want a entertainment center in the living/dining room? 

Some of our stuff just needs to be replaced because it's in bad shape. But it can't go out the front door because the staircase is too narrow (I think - the old railing wasn't there when we moved in the furniture so it didn't matter. We put up the new railing after the furniture came in.) It can't go out the back door because I really don't think the deck stairway is sturdy enough to support the weight of the furniture plus a couple of guys doing the moving.

I want to get the paperwork in order...
Dump the stuff that really can be dumped.
Sort out the bank statements and other financial stuff by year and store it someplace I can find again.

I want to put up siding or re-paint the house....
Siding. I don't want to have to repaint again. I wonder if that will get rid of bugs. (not termites, I don't think.)

I want to re-landscape...
New lawn or some ground cover.
Perenials maybe, or flowering bushes or something that will add color.
Something with color brighter than a dull green between late fall and early spring.
A bench or some other kind of sitting area
Some kind of privacy screen, the house is on a street corner and the yard is open to the street from both corners. Not the entire yard, but enough to not look like I'm sitting in the yard to watch the neighbors.

I want to decorate downstairs....
Live upstairs in the winter and downstairs in the summer. It'll save on the airconditioning costs big time

I want to find a property management company....
I can't do the maintenance really. And if I (or we) move to a condo, we'd have to pay a mortgage and maintenance fees. The house has no mortgage, it'll just be the maintenance fees.

I want to have a home that's a refuge from the outside

Weekends are hard

I really hate weekends. During the week, I'm at work, so that's 9 or 10 hours where I don't have to be around my husband. We talk during the day and he's SO crabby when I wake him up. Well, how am I supposed to know he's asleep? So I don't call, then he gets upset when HE has to call ME because he thinks that means I forgot about him.
By the time I get home, he's waking up and ready to rock&roll :) But that means "it's too early!" when I want to go sleep at 10 or 11pm. He wants me to wait until he's finished with his meds for the night. Which he doesn't take until midnight or 1am. And yes, the alarm goes off at 6.30am. And no, that's no nearly enough sleep for me.

Weekends have no away-time unless I run errands, but there's only so many errands I can go out for. So I listen to him all weekend constantly talk about being in pain (but not enough to take pain meds) or be his "get-me" girl (get me some water, get me the hours of the store, get me, get me, get me, get me...) A thank you or a please once in a while would be nice. But no, I hear "get me----" and "what took so long?"

A week or 2 ago, he was saying he's going to make back home with his parents (2 hrs away, driving) because "they can take care of him better than I can." As much I hate the idea of moving in with his parents (he's not planning to go alone), weekends like this, well, they can have him back. Just him, I'll stay here thankyouverymuch. Let's see how long they deal with his attitude.

Stuff that scares me

- Getting sick with something that needs to be taken care of on a schedule - like diabetes or just a 4 times/day antibiotic or something. Doing things on my schedule means it's not dh's schedule and I don't want to deal with his attitude about being inconvenienced because I can't do xyz at 7pm because I have to take care of whatever for myself. Even if it means just a 5 minute wait for him, it's still there.

- Having to take medical tests where I can't drive afterward, or be left alone for 24 hrs afterwards because of the conscious sedation drugs - How do I get home if dh can't drive? Who do I stay with, or who stays with me, after he's gone?

- Bugs in the house - dh gets rid of them now, but later? I'll need a good exterminator...

- Dealing with all of dh's saved up pack-rat stuff, we don't need a million boxes or a shed or whatever to store this stuff. We need to THROW IT OUT. What's left, what's worth keeping, we'll have enough space to store (might need a few shelves or something, but the space is here)

- Living alone. I've never done that.

- Planning a vacation, not the planning so much as the traveling to/from whereever.

- Somedays I'm looking forward to being alone.

Sunday afternoon

He thinks/acts like the only thing I should be doing is being available for him for everything. He wants to know some obscure detail about something, I should drop whatever I'm doing and go on an internet search. And keep searching for more info when he has more questions because I don't know. Or if he's ready to eat, then I have to stop whatever and make him something to eat NOW. He doesn't cook for himself, all he'll make for himself is toast & cheese.

Because he has cancer and I'm supposed to take care of him.

I wonder what it'll be like in a year or 2 or 3 when I'm alone. Will I enjoy the ability to do what I want for how long I want without interruptions. Will I be full of "yes, he was annoying, but at least I wasn't alone, poor me!"

walking in the shadow

My husband was diagnosed with a rare cancer 5 years ago late December. Depending how well he responded/s to chemo, it could be controllable... a chronic disease like diabetes or some other long term disease. Without too many breaks, he's been on one chemo or another ever since.

Last week, while doing his 3rd blood transfusion in 2 weeks, he asked about hospice. The oncologist said if my husband decided to stop treatment, he'd be in hospice (or end-of-life care) within six months.

That's the shadow... it's there, but not really. He started a new chemo regimen last week.