Officially on Hospice

Mom is now officially on Hospice Care. This means, among other things, that we do not have to subject her to a trip to the doctor tomorrow.

The nurse was here for quite a while today, and wants us to give her morphine every 4 hours around the clock - even waking her to do so. She has also added an additional medicine to help with the nausea.

Mom has been getting weaker and sleeping a lot more over the past 4-5 days.

The other day she watched the DVD of Doug's memorial service, but she had a hard time hearing the words clearly, so today I read her the words that James had said about his grandpa (he had given her a copy of his "eulogy" the day of the service). She really appreciated it and it was good to see her laugh. Ron printed a picture of Mom and Doug sitting in our living room when they were here for Thanksgiving (last year??). I think they were having a conversation about how he was going to take her to Hawaii, and she was saying that it would cost too much. He said money was not a problem!

That's about all for now... thanks for the prayers. They are being answered.

Relief

Well, the morphine is giving pain relief, but it also brings (of course) sleep. There is some nausea, but I think the new anti-nausea medication (reglan?) is helping. I haven't asked her a lot about how she feels.

She can have the morphine every 2 hours, but it tastes very bitter and she doesn't always take it that often. We did wake several times during the night and give it to her.

She is so out of it that I wonder how we will get her to the doctor on Thursday. We'll cross that bridge when we get to it.

In the meantime I'm switching gears and heading off to the department meeting....

More Adjustments

We've switched to morphine every two hours instead of the oxycontin, and are using a new anti-nausea med, taken four times a day. Please pray for pain and nausea relief.

Also, the doctor has moved the next appt up to this Thursday, rather than wait for Sept. 13. I am glad for that. Pray that mom feels up to having a shower and having her hair washed and set by then! She really needs a haircut, and I could do it, but couldn't guarantee a good result! I've cut my fair share of hair though, so we might give it a try if she is able to sit that long.

Last night I was feeling very distraught because it seems like I can't DO anything to help her feel better. I so want her to get relief.

Thank you for all your prayers and encouragement - but believe me when I say that I am not a "wonderful person" for doing this. I am doing this because GOD has put it on my heart, and it is only by HIS grace that I am ABLE to do it. Pray for me - and for Ron as well. Thanks....

Pain, Pain, Go Away

After consulting with the doctor last night, mom's back on the oxycontin for pain. Please pray that it doesn't bring the nausea back. She had been doing much better in that regard without the narcotics, but the pain was pretty bad.

She has known for some time that her kidneys are not functioning well. If they continue to fail that could be what leads to her death. The doctor said that would be a peaceful way to die, and that would be a blessing. Please pray for a quick end to her suffering. She is more than ready to go.

Lately most of the acute pain has been in her upper thigh, but she also hurts all over. She is so miserable - and yet "miserable" hardly seems to describe it. She seems to also be getting weaker, and yesterday was out of bed for only a very short time, and had a hard time making the walk from the living room back to the bedroom (about 35 ft?).

I've wondered about what I should and should not be writing here. The original intent was to provide updates about her condition. But since by definition a weblog is a log, or journal, it also makes sense to be "journaling" about how this experience is affecting me, since I am the one writing it.

It's been just over a week now, and to be honest, I am exhausted. I am to go back to work on September 6, and I wonder how I am going to be able to handle teaching two classes in addition to caring for mom. But when I am tempted to worry about it, I remind myself of how faithful the Lord has always been to give me the strength I need when I need it for all kinds of difficult situations. Having that kind of track record with Him makes it possible to set the worry on the shelf and rest in the knowledge that when the time comes, He will enable me to handle whatever comes. I cannot imagine going thru this without knowing the Lord. And knowing that mom also knows Him - that is precious.

There are times when I wish that I knew how long it's going to be. But that kind of information is not given to us and so we trust God for even that. He knows the number of days she will have, and He will sustain her until He calls her home.

I asked her yesterday if she thinks about Dad at all, and she said, "No." I asked her if she thinks about heaven, and she said, "No. I don't think about anything." Then I got it... "You need all your energy to just cope with the pain." And she nodded. There are times when she is close to tears - then I know she's really hurting. I don't think she's been without pain (except during sleep) since Easter. That's a LONG time.

How I wish I could relieve her suffering. But I cannot. I can only try to do little things like adjust her pillow, or put some soothing music on, or pray for her (not that prayer is a "little" thing!).

I know that many people are praying for her as well. She would ask that you pray for a quick release.

I met Thursday with a counselor that I've worked with off and on the past 5 years. She advised me to (in writing) say goodbye to mom, and release her into God's care. I'd suggest the same for all who love her. I told her yesterday that I will miss her so much when dies, but that I will be happy for her to be finally free.

Well, I've rambled on long enough. In keeping with taking care of myself, I will go have breakfast! Thank you all for your continued prayers for mom and me and for Ron as well.

Soli Deo Gloria! To God be the glory!

Better

Had a good meeting with Bernie and, with the doctor's input, have made what I believe will be beneficial adjustments to mom's medications. She got a lot of sleep today, but was awake late afternoon/early evening and just went to bed (8pm). Hopefully she'll sleep well tonight.

We watched an Alfred Hitchcock movie together ("The Vanishing Lady") and then she joined us at the table for supper - ate some custard and a bite of roll!

They aren't kidding when they call it "Palliative Care" - their goal is to find ways to give comfort care. The definition of "palliative" from Webster's is:

Etymology: Middle English, from Late Latin palliatus, past participle of palliare - to cloak, conceal, from Latin pallium cloak
1 : to reduce the violence of (a disease)
2 : ...
3 : to moderate the intensity of

Bernie came up with a number of ideas that I think will help her be more comfortable, and for that I am extremely thankful. Hospice will also provide volunteers to stay with her so that Ron and I can get out of the house and go out together. We need to avail ourselves of that sometime soon.

Well, I'm exhausted and am heading for bed myself! Good night.

Yay!

I had to go out for a few hours this afternoon, and mom slept a lot all day. Ron said that she was sleeping on her side and looked more comfortable than usual. When she woke up later in the afternoon, she said that she'd gotten significant pain relief and had slept well.

I shared a story about Aria from Brian's weblog (ozmar.blogs.com) and she seemed quite alert and interested. AND she asked for a small bit of bread and butter and peanut butter because she felt HUNGRY! This week especially she has been spending more time during the day not connected to the feeding tube, and several times has said she felt hungry. So this food has been in addition to the bites of chocolate she's been asking for and the few sips of orange juice in the morning.

I am pleased that Bernie will be here tomorrow and I am optimistic about making adjustments that will bring relief. Yet I realize that each day can bring ups and downs. It sometimes seems that just when things look promising, we have a setback - so we take it one day at a time and thank God for each blessing.

For me one of the greatest blessings this past week has been the opportunity to lavish mom with love and compassion as well as to be a servant to her. It is an honor and a privilege, and she frequently expresses her appreciation.

Our times are in HIS hands.

Adjustments

Saw the doctor yesterday. She is making some adjustments in the meds, and more importantly, has referred mom to the Hospice Palliative Care program. Bernie and I will be making some decisions about how best to manage all the meds to make mom more comfortable. She already suggested Benadryl to help her sleep - and she has been sleeping for an hour after her first dose. Thank God!

I have to return to school September 6, so Ron will have to take over more of her care. Who knew that when he lost his job last spring he'd have to fill that role now? (God did, of course!)

Setback

We've had a rough day. Mom's been nauseous and throwing up. I think that it's clearly due to the fact that she asked for several doses of oxyfast yesterday. (Since she came on Thursday she'd been getting only one dose per day.) The hospice gal was here today, and advised stopping the feeding for a bit so her stomach can calm down. (Aside from that she doesn't have any "magic pill" to make things better, and we'll talk again after she consults with the doctor.) Hopefully tomorrow will be better.

Thankfully the doctor appointment is on Wednesday. It's frustrating, though, because there just don't seem to be any answers or solutions to her misery. She said again today that she wishes that she could just go to sleep and not wake up. It's hard to see her suffer and it's becoming harder to want to convince her that it's worth living when her life is so difficult. Yet life and death are in God's hands and He must have a purpose since she is still alive. It's hard to understand.

I try to find things that can offer some comfort - from soft music to Scripture on CD, or just holding her hand or watching her favorite "As Time Goes By" with her.

I told her Thursday that we were so glad she was finally here. I can honestly say that I still feel that way. As hard as it is, it is a privilege to show her love and compassion and to try to meet her needs as best as we can. Pray for her and for us....

Establishing a Routine

Things are going really well. Mom seems to be in less pain and her nausea is much less as well, from what I can observe.

I'm learning the drill - managing all the meds and the other things that have to be done each day. Mom has been spending some time up and out of the bedroom each day. This evening we watched two episodes of "As Time Goes By" together in the living room before she had to go back to bed! That was an improvement.

She has even asked several times for a bite of chocolate! And while sometimes she gets anxious, we deal with it by finding something to distract her, like watching a video or DVD, or listening to music. I think that overall she is calming down. She still gets anxious and is still having pain, but it seems to be a little bit less severe.

Yesterday we were able to open a bank account, and - get this - the banker actually came to the house so mom could sign the papers!! Man, it still pays to live in a small town!!

I will stay home tomorrow and Ron will go to church. I don't want her to be home alone just yet even though she's doing all right. Monday the hospice nurse will come to evaluate the situation and give us her input.

I am sharing excerpts from "Glorious Intruder" by Joni Eareckson Tada and "Come Away My Beloved" by Frances J Roberts, as well as a book from Barb by Corrie ten Boom. And it's been such a blessing to pray with and for her - especially when she asks "What am I going to do?".

She has shown interest in listening to "To Kill a Mockingbird" on tape! That's great.

I'll probably give another update Monday night after the hospice nurse comes. For now I need to go relax in the hot tub - my shoulder is hurting a lot tonight. Later.......

We're Home!

Praise God - we've made it home. After a minor glitch getting the prescriptions filled (but at least we didn't have to drive to Edina to do it!), we actually made the trip in four hours, with only two short stops. Mom is resting in her new bed as comfortably as possible. Now we work at getting a routine established - finding our way in these uncharted waters.

Thanks to everyone who helped with everything during this very long summer. We love you all and will miss seeing you now that we can stay HOME.

Help is on the way!

Just talked to the nurse who works with the Palliative Care program thru Hospice, and she'll be here Monday to meet mom and assess the situation to see how they can best help her and work with the doctor to make her more comfortable. Praise God!!

Living Room

Note mom's recliner just as you enter the living room, as well as her table and lamp. We've also got the cuckoo clock in here. We're so excited about her coming!

The Sitting Room

This is mom's new "sitting room." Everything in here is hers - we were surprised at how much we were able to bring. Once she is feeling up to it, she can "entertain" gentlemen callers here (i.e. her new pastor!) or family members that are willing to make the "trek" to Wisconsin.

Mom's New Room

We've prepared her room - the bed comes tomorrow. We hope that being surrounded by all her beautiful things will give her comfort and some happiness.

Two More Days!!

Wow... just two more days and Mom will be here!

All the details continue to fall into place in an amazing way. I talked to Hospice today and the Comfort Care services they offer will be able to get involved immediately without her first seeing the doctor. Our main goal - pain relief without the accompanying nausea.

In the meantime the doctor did approve adding oxycontin to the mix, so hopefully she'll be doing a bit better to travel here on Thursday.

We're waiting for delivery of all the equipment; otherwise everything is ready.

Sometimes I still can't believe that we are doing this. Sometimes I get nervous and scared about the whole thing. BUT then I remember the very clear indications that God is leading us and that HE is in control. We ask for your prayers and hope that you will check in frequently to see how you might pray specifically. I will try to make frequent posts. Any feedback can be emailed to me at olekids@charter.net.