Until you've experienced a serious illness in your family, you don't realize how expensive medical supplies are. While Mr. B was still in the hospital we had a visit from the occupational therapist. She gave us a detailed list of the medical items that would be required before we could bring Mr. B home. These items were needed for safety and comfort reasons. And came to a total of over $1,000. With only one income in our family, it was an added burden that I didn't need to worry about right now. But thankfully we have credit cards that still have available credit room. I'm not sure what I would have done otherwise. There were so many items that had to be purchased that were not really medical in nature but were still needed. For example, I had to purchase two sets of sheets for the hospital bed, some extra pajamas for Mr. B, a pair of slippers, a handheld shower attachment and a truckload of over the counter pharmacy supplies.

Our home has been transformed. I had to totally rearrange the furniture in our bedroom to allow for a hospital bed to be moved in. I had to make sure that all areas in our home had enough clearance to allow for Mr. B to steer a walker around without hitting something. Right now I've crowded excess items into my office and the den and I've made these areas off limits to Mr. B. He's not very impressed with that but I don't want to take a chance that he will get hung up on something and take a bad fall. In the next few weeks I will need to make some hard decisions about getting rid of some of these things. 

And through this all I realized something that totally scared me. Mr. B is now an invalid. I cried buckets when I said the word to myself. Now I need to constantly check that he has taken his medications, laxatives, stool softeners, etc. I have to help him shower and sometimes to get dressed. He is taking very strong pain killers and I'm sure that is what is causing his mind to be fuzzy. In the past two weeks his pain medications have tripled. Which is another reason that I won't leave him alone if I need to do an errand. The physical therapist at the hospital didn't even want him to walk without someone close by. She felt that he was just too shaky when he was standing to be trusted alone.

Our days are very quiet. Mr. B spends a lot of time sleeping. Whether that is because he is depressed or just tired or possibly a bit of both, I'm not really sure. Each day I see a little more of him slipping away. He didn't even watch the final game of the NBA basketball championship. He would never have missed it previously. 

I try to spend as much time with him as possible. I wait until he goes for a nap or goes to bed for the night before I go on the computer. At least I can usually get him to talk a bit if I stay in the room with him. Otherwise our home is far too quiet. He usually only speaks if I talk to him first. The only time I actually see him become animated is when he receives a phone call. Unfortunately they don't come often enough. :-(

On Tuesday we have an appointment with Mr. B's oncologist. We will find out if the plan is to resume the chemo treatments. If they are not resumed than Mr. B will need to go on dialysis. And yet if they are resumed, I fear that Mr. B will not be strong enough to handle the risk of future infections. 
6/25/2012 12:09:57 am

Oh Shelley, everything you write sounds so familiar from the Spring 0f 2010 for my husband. 31 days in the hospital, ambulance transport back home, hospital bed in our bedroom, walker. home physical therapy, lots of sleeping, financial worries...I'm so sorry for all the burdens you must bear. I pray things turn around for Mr. B, and for your strength to endure.

6/25/2012 03:00:17 pm

Wow, Linda. I really need to get back to your blog and read the beginning of your journey. That is exactly what I've been going through. I even asked the doctor if I should be considering palliative care for my husband and if he was worse off than I thought he was. But I guess the key will be if the oncologist can get some results from the chemo treatments. We see him tomorrow morning. Which starts off a full day at the treatment center. We just found out today that they wanted to add the bone strengthener treatment tomorrow. I talked them into doing it today instead and I'm glad I did. When we got home we got another call from the doctor's office and they want to give Mr. B a litre of IV fluid because his creatinine levels are so high. So we will be there from 10 am to about 7:30 pm. Crazy.

Angie Murray
7/5/2012 09:44:49 pm

i understand and the silence is deafening! :-(

7/8/2012 02:57:28 pm

Angie, you are so right. Even when Daryl is awake, he walks so quietly that I can hardly hear him. He's sneaked up on me on more than one occasion when I've been busy doing something. Makes me jump!

7/8/2012 02:37:43 pm

i stumbled upon your blog quite recently. i can completly relate to the lonliness, anxiety, and all the unknowns that loom over you as you struggle to care for your husband. as a caregive for hugh since 2009, it always seemed there weren't enough hours in the day to do all that comes with CG'ing, and yet there were so many hours spent alone while he had to sleep for long hours at a time! what helped me most was practicing to do good things for myself during those times - phoning a friend to chat, bringing some flowers in from the garden, getting lost in a good book, or maybe some good music to soothe me. those things were also a good and helpful bridge to another coping skill that, mastered, can be so life-enhancing. living in the present. when day after day we get clobbered by so much MM presents us with, sometimes overwhelmed with so many "what ifs", it helps to look around and see what's right and true in our lives, in the here and now. i think you are doing a great job as a CG, and as mr. b's advocate. and your blog is helping you reach out to others who need the inspiration and honesty your words provide. i am so sorry for all this miserable disease is piling upon your shoulders. just please know you are not alone. i will keep you and mr. b close to my heart abd send powerful thoughts of healing and comfort. hugs, karen sutherland

7/8/2012 02:54:16 pm

Welcome to my blog, Karen. I value every comment that people leave for me. They really help to keep me encouraged and I hope in the process they can also give themselves some encouragement.

My husband can spend as much as 75% of the day sleeping. I'm starting to learn to do things when he's sleeping that would normally take me out of the room that he's in. It's not that he can't be left alone in the room but I feel that I don't want to let one moment slip by that I could have spent with him. So I will do things like work on my client's books while he's sleeping or watch a recorded TV show that I know he doesn't really enjoy. I've even started to go out for lunch dates with friends. This one has me a little more anxious though but I really really need these outings.

This disease is horrible. I watch Daryl slip away a little bit each day. He's losing so much weight and eats like a bird. And some days he throws up the little bit that he's eaten. I try not to stare at him but it's hard not to. I keep asking myself how he would have changed so much in less than 6 months. :-(


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