Wander-Inn: One step at a time, one day at a time.

Current mood:overstimulated

Read this or not. I'm just going to ramble and try to get out some of what I have been doing the past three weeks. I doubt it will make an interesting blog.

Back in April Harriett was getting sick much of the time. Unfortunately, I didn't think too much of it. I knew she was getting very tired of caring for Mom and thought it was probably what was really getting to her. Harriett's room is in a far corner of our basement and when she's in her room we just plain don't see or hear her. One day she said she'd been throwing up all night. To be honest, that means different things to different people. It could be very accurate or it could mean once. I said something about I'd take her to ER if she wanted to go. The next day she said, yes, it was time to go to the ER. For that to come from Harriett is very significant.

Just a week earlier I had taken Alyssa to the ER for a gall bladder attack so I was sort of expecting a quick trip with some sort of similar results. It was not to be. Harriett was tested for several different things, admitted to the hospital and given two pints of blood for severe anemia and IVs to rehydrate her and ordered more tests. Ultimately she was told she has stage IV breast cancer. She spent most of the week in the hospital before she was released to home.

We've seen so many doctors and been to so many tests I have about lost count. Harriett started radiation therapy and hormone therapy. The radiation therapy has been a daily thing and will last through part of next week. Most people go in and get zip-zapped and are back out in only a few short minutes. For some reason, Harriett's treatment take 45 minutes. For that period of time she has to lay very still on a hard table that is raised and lowered which is very frightening to her.

Her hormone therapy involves an infusion once a week. The first session took about 1.5 hours, two different bags of chemicals. The next two will only involve one bag and they can administer it more quickly. Did I mention she hates needles? While she was in the hospital they must have changed her IV from one arm to the other at least daily. Because she'd been so dehydrated it was very difficult to find a good vein. Fortunately, at the infusion center they found one easily, but being poked is still being poked and it aint much fun.

We've also been running around trying to get eveyrthing lined up for Medicaid. Now that that is finally in place, we have to run back to every clinic and doctor that she's seen and give them the card so they can get paid. Luckily, four of the clinics are in the same hospital complex and the registrar could apply it to each account. Saved us a ton of running around. We will have to drive back into the city to give the card to the Huntsman cancer center at the U of U hospital. That's the most inconvient one. The other three or four are more local.

While all this has been happening Alyssa had her gall bladder removed and had to take time off work and had some lifting limitations. The time off work was a good thing as she could be at home with my Mom, but the down side is that she couldn't do much to help her get around because of the lifting involved. My husband has worked from home for almost three weeks so he could be here to assist with Mom, too. Bless his heart!

Speaking of Mom, I am feeling like I may have to seriously revisit if I/we are physically able to care for her much longer. She has a harder and harder time standing up from a sitting position which requires us to help her stand by lifting her. She walks very very slowly with her walker and often has to stop and take a deep breath just crossing the room. We don't dare not be right with her when she is walking. That would be about once an hour to and from the bathroom. We have to assist her in sitting down on the toilet, getting back up, wiping if she did a poo, and pulling her pants back up for her (did I mention taking them down at the beginning of the process?). I am staring to have to hand her her teeth in the morning to put in. I used to just hold the denture cup in front of her and she'd take them out and put them in, but now if I do that she will try to put them in upside down, sideways or however she picked them up.

Yesterday she picked up a card my brother had sent her for Mother's Day and I saw her pointing at each word with her finger. She can no longer comprehend what she reads - very sad for the avid reader that she was. She can't comprehend what is happening in a television program. She has trouble understanding what is being said to her by the people around her. She does not enjoy listening to music. What else is there? It's very sad. Since she needs full time care I haven't been able to travel around Utah and see the beautiful sites in this state, and now we are moving away. When I realized how much I haven't seen I started to guage how much I've given up to care for Mom. I hate that I am starting to resent caring for her. But at 52 I have many more things that I would be doing if I weren't a full time care-giver. And at 52, I don't have as many years left to do whatever I want as I wish I did.

I took Mom for a long ride on the day we had the new carpet installed. It used to be something she would love - just getting out of the house and seeing the sites. But this time she sat in the seat beside me and could hardly see the things Alyssa and I would point out to her... bison and antelope. We had the greatest experience watching a coyote approach a small herd of antelope and all she did was let me know that she was sitting in the sun (meaning, let's go!)

I have no idea what it will be like trying to get her through and airport and onto a plane for a few hours when we finally make the move. She does wear a "diaper" so I will spend most of the trip trying to convince her she doesn't have to 'go.' Hopefully that will preclude doing the poo - I just don't know how to 'hide' that odor, and I KNOW I won't be able to squeeze into the lavatory with her....

Since she's been watching us scurry around doing all the things we have to do to get the house in shape to go on the market she's decided that Mark and I are separating. I don't know exactly how she came up with that theory, but she keeps asking me if we are. When I ask her why she thinks that all she can come up with is, "it's the only thing that makes sense."

Getting the house ready to go on the market has been another nightmare! I don't know how many van loads of "stuff" we have hauled to the DI. And that's with the seats removed. We've hauled dressers and cabinets and boxes and boxes of clothes and boxes and boxes of books and a ton of miscellaneous stuff. We still have more to take. We also had a storage unit put next to our driveway so we can move stuff out of the house and store it in there. So another couple of tons of stuff has been boxed and put in the cubey. You'd think that with all we have moved out that the house would look empty.... heck NO!!! Where does all this stuff come from and what's it doing here and why can't I seem to get rid of it?????

Mark's been doing all the really hard stuff - making the yard look great, scrubbing the floor in the kitchen to get all the dirt out of the tile and grout, painting this, that and the other thing, washing walls, doing the lifting, etc. He's awesome. Of course no matter what any of us is doing, we have to take frequent breaks to assist Mom to the bathroom or feed her or give her another pill.

Did I mention that my darling daughter Alyssa has made sure that her schedule at work is all switched around so she can be here to care for G'ma when I am taking Harriett to one or another of her doctors' appointments? Did I mention that there have been several days that Harriett & I started out in the morning to see doctors or case workers or whatever and didn't get back home until after 5 or 6:00? Did I mention that Harriett has at least three (it might be four) different anti-nausea medications and she still gets sick? Did I mention that Harriett has lost almost 80 pounds since January?

I don't know what will happen with Harriett's treatment when we move. Will KY take her into the medicaid system there? Will we find the awesome doctors that we have here? Is there anyway to find housing and transportation so she can stay here? Could I really leave her behind to face all this alone? I don't think so.

My youngest daughter graduates on June 3rd. Her grandparents will be coming for a week and staying with us. Of course we have to have a graduation party for her.

Since the housing market is going down the tubes, it would make sense to hope that our house will sell fast and very close to the price that we are asking for it. But what will we do then? We can't move until after graduation - and I don't know what to do when it comes time to move anyway with all I have to consider. Is it wrong to hope our house doesn't sell?

As Harriett and I turned the corner onto our street today the first thing I noticed was that the sign went up. The For Sale sign is now officially in our yard. It almost made me cry.

I keep thinking I want my life back... but I am not even the one with alzheimers or cancer. What have I got to complain about?

By the way...what happened to my "listening to" "reading" or "watching" selection? I miss adding that to my blogs.

Corinne Spranger

Oh, Betsy Darlin', I almost can't breathe reading what pressure you are under, and I think you are way past due for feeling a little resentment. You are only one woman (and a strong and caring one at that) but you are carrying a burden built for about six women. Are you even getting any sleep? I worry that you are going to become so spiritually and physically depleted that you might fall ill yourself. Your body will soon say ENOUGH!!!! When Greg's dad had Alz, we eventually had to make the decision for a home, because Greg;s mom was kind of what you are now. SHe was losing weight, not sleeping, and on antidepressants.

Hon, my prayers are out there for you, your family, and Harriet. I hope God finds an answer for you all, and soon. I, in your shoes, would have been having conversations with the cucumbers and damcing nude in the street long before now. DO NOT FEEL GUILTY.

Much Much love and compassion, Corinne

Reply(1)

3 years ago

Betsy Gully
OMG, i have been talking to the tomatos and TOTALLY ignoring the cukes!!! More guilt!!! Do you think they will ever forgive me??

Thanks so much for your response. You brought tears to my eyes just knowing that you (and others) are holding me up spiritually. Thank you!!

I know it's more than I ever wanted/expected to carry, but I am very aware that it is a CHOICE I am making on a daily basis. Harriett is with us because she is family and we are her family and I am happy tha

3 years ago