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I just returned yesterday from a week away from Mr. B. This was the first time I've been away from him since he was diagnosed with Multiple Myeloma. It wasn't really a vacation though. I wish it had been. People kept saying to me that I should have a good time and to enjoy some respite time. The truth was that I was dreading the time away for many reasons. My brother passed away on February 1 and he lived quite a distance away from me. He had been hospitalized for about a month but I was really hoping that he would manage to overcome the infections and he would return to his apartment. Unfortunately the last week he was in the hospital he took a turn for the worse and passed away. So since he lived in the same apartment that he had shared with our mother who passed away in 2005, I had to fly to Vancouver one last time to sort through papers and photos. The executor was looking after the disposing of the furniture and painting of the apartment so my time was just spend dealing with the papers and photos. I was very thankful for that. But staying in the apartment alone was very hard for me. It was hard to be there and not have my brother with me. He and I were very much alike. We understood each other. I loved him very much and will really miss him. My last night there was the hardest though. My parents moved out to Vancouver in 1981. The apartment building was brand new and they were the first ones to live in this apartment. Then a few years after my father passed away, my brother moved out to Vancouver to be with my mother. So I guess I felt like this was my home too. And now I had to say goodbye to it for the last time. I cried a lot the last night I was there and I cried a lot the next morning when I left it for the last time.

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When I was away, even though I missed Mr. B terribly, I found that there were moments where I actually forgot that he was sick. I even had a few moments were I enjoyed the company of some of my West Coast friends. I actually started to feel normal again. BIG MISTAKE! I was lulled into a false sense of security and I realized that as soon as I opened the door to our condo.

Mr. B stood up with great difficulty (due to pain) and made one beeline straight to me. He hugged me and started to sob. I asked him what was wrong and he just said that he was very tired and felt like he had been treated like a piece of meat. It took some prodding but from what I could determine, he was upset about things that had happened while I was gone. Usually I look after being the go between when it comes to his doctor appointments or ordering his prescriptions. I had left Mr. B in the competent hands of his sister who is a retired nurse. Or at least I thought she was competent. I found out from his other sister on the way home from the airport that his temporary caregiver had taken a "hands off" approach with Mr. B and let him manage things himself. I was so upset. I had explained to her before I left that his mind was foggy at times from his medications and she would need to monitor that he was taking his medications correctly and on time. As I quizzed him later that evening, I also found out that she had not monitored his dose of Kayexalate and he had taken too much. I always pre measure that out for him because the nurses have cautioned us on how dangerous an over dose can be. So off we went for some more blood tests today to check on Mr. B's potassium level. 

I should give some more background information. Mr. B had two bad falls in mid January. They happened two days in a row and required ambulance trips to the hospital. The second fall resulted in a new fracture in his back. These falls have caused a great deal more pain for Mr. B. But before I left, he seemed to be managing his pain better. Today though was not a good day so I was very happy that we had an appointment already scheduled with his pain doctor. I also asked the doctor if he could prescribe an anti depressant for Mr. B. I'm not one who usually supports taking pills for depression but I think that Mr. B is just struggling too much with this whole process of having cancer. We do see a counselor monthly but lately we haven't been able to see him because of how Mr. B  has been feeling.

I would really love it if someone could break the connection for me. There were times in the past year when I wanted to run away and not return. I get so tired sometimes both emotionally and physically from trying to manage my husband's care that I want to disappear into my own little world where he isn't sick anymore. Losing my brother really hit Mr. B hard too. We both cared very deeply for him. Plus it was a reminder that we don't know how much time left Mr. B has. It scares me that he might be doing worse than I think he is. Even though his protein numbers are coming down from the Revlimid, his over all health doesn't seem to be very good. Now the past few days he hasn't been eating very well. Or that might even have been going on the whole time I was away. Today at the doctor he was weighed and was down almost 7 pounds since he was weighed about 3 weeks ago. His head is drooping even more than when I left him. The bones in his spine have deteriorated to the point where he cannot even hold his head up. Try kissing your husband goodnight when he can't even lift his head to do a simple thing like that. My heart breaks for him every day.

Yet, I know I will be ok. Having this week away gave me a taste of what life will be like once Mr. B is gone. The first few days were very hard but I did find myself starting to adjust to being alone. I know my life will never be the same and I can't dwell on the "what ifs". My desire is that I can make every moment that Mr. B has left on this earth to be joyous ones. I asked him if he would prefer his sister's caregiver method over mine. And he quickly said "NO". I may be accused of fussing over him too much but I would rather know I had done as much as I could for Mr. B than to feel guilty that I didn't do enough.
BARB BURANT
2/22/2013 01:21:23 am

Shelley, I'm so sorry to hear about your brother. You have my deepest sympathies. I can't imagine how hard it was for you to be away from your husband. I have to go to work every day (Bob is on unpaid medical leave) because mine is the only income, and that's hard for me, but that's only 8 hours or so. Please let me know how the anti-depressants work. I think Bob needs them, but he doesn't want to "take one more pill". You sound a lot like me when it comes to "fussing" over our husbands. Bob had a bone x-ray again because of the pain in his back and they found two more compression fractures. All the information was sent to the specialist at the Cleveland Clinic and we're waiting for her to call to let us know what, if anything, she wants to do. I hope they something because the pain is getting worse every day.
Again, my sympathies and you and your husband are in my prayers daily.
Barb

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Shelley
2/22/2013 11:23:19 am

When I picked up the anti-depressants the pharmacist was concerned about a drug interaction with his Fentanyl Patches so he had called the doctor to confirm that it was ok. But after speaking with me, he determined that it was ok to give them to me since it was only a level 3 concern. Seems that level 1 is the one to watch out for. After discussin it with him, I decided to wait until Monday to give him the new medication. That way I can call his doctor if something seems off.

I miss my brother so much. I cry when I see things like his name in my phone contact list or my email contact list. I still can't bring myself to delete those yet. I did delete his Facebook account but I wish I hadn't done it quite so fast. It just didn't seem right to do it. I guess I'm just not ready to accept that he's gone. :-(

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2/22/2013 07:08:09 am

I am in training to be a Home Care Provider and I can assure you that your SIL's attitude about 'letting him care for himself' is, at least in the US, not the Standard of Care. I am so sorry that your brother's death and your husband's condition with MM is weighing so heavily on you and I am intending that you are finding someone other than the SIL to step in and give you some relief once in awhile. Because as a full-time caregiver, you do have to have time away. It would be a good idea if your community has HCPs who could come one afternoon a week...???

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Shelley
2/22/2013 11:28:31 am

Sandy, I've felt for a long time that Mr. B's family is missing the "empathy" gene. I don't know what I was thinking when I asked his sister to come stay with him. I thought that being a retired nurse, she would be a good choice. Guess I was wrong. I'm still having a hard time imagining her caring for patients.

We really don't quailify for homecare right now. Mr. B is not at the point where he shouldn't be left alone yet. It's more of my fears that something will happen when he's alone. He is not quick to admit that he needs help. i do manage to get out for a few hours here and there to pick up some groceries. And every now and then a friend will pick me up for lunch. It does help keep my sanity.

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Mary
2/22/2013 10:08:48 am

There are days when prayer it seems is all we have to keep us going. Wishing you strength and healing.

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Shelley
2/22/2013 11:29:35 am

Thanks, Mary. I don't know what I would do without prayer. I can't do this walk alone, that's for sure.

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Nicky
2/24/2013 08:37:35 am

I hope you know I'm here for you Shelley, just two floors up.

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Shelley
2/24/2013 02:16:02 pm

Thanks, Nicky. You know how much I appreciate your kindness. Sending big hugs to you. No, wait....I guess I can deliver them to you since you are only two floors up. LOL

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2/24/2013 01:44:52 pm

dear shelley,

please accept my deepest sympathy for the loss of your dear brother, to you and to daryl. i am sending you both my most powerful vibes to help you both in your grief.

i am glad you have your blog so that you can reach out and tell your story - i hope that along with your faith it is offering you comfort. i know it is helping others who do daily battle with being a caregiver, as well as those who are myeloma sufferers.

it is always so disappointing and very upsetting to feel one has gained ground with pain being better managed, and then something comes along and pffft - there is a set back.

i will hold out hope that the anti-depressant medication will be effective and really make a difference. alleviation of depression should certainly provide a better quality of life, both for daryl and for you - feeling such helplessness at seeing him so down and sad i know is a heavy load to carry.

i am wondering - has anyone ever brought up any type of surgery - like kyphoplasty - to repair the spinal fractures? being unable to hold one's head up must be a tortuous ordeal for so many activities of daily living.

as you recall the pleasant times you had away from all the caregiving duties, i hope you can enjoy the good memories; you did the best you could to provide for daryl while you were away. it is not your fault that things went amiss, and further down the line when you have other opportunities to get away, you will have a better sense of what arrangements should be, meanwhile, be good to yourself; find moments each day to give yourself a break, rest, and renew yourself. the tasks and time we CGs devote to our loved ones seem ever endless, don't they? but keep up the mantra of we can only do what we can do - and keep writing!

sending you much love, XO

karen, TC

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Shelley
2/24/2013 02:24:48 pm

Karen, kyphoplasty was discussed last spring but the doctor felt he didn't need it at that time. Now, I think they feel that his bones have deteriorated to the point where inserting bone cement could cause the bones to break down even more. The rigid nature of the cement would cause the bones to crumble. The doctor wanted Daryl to have radiation to stabilize the new fracture but he has refused that.

In some ways I feel like I'm watching a train wreck in progress and there's nothing that I can do about it. I can see that something is wrong with Daryl and I'm not sure if it is physical or mental. I know that he is very agitated and impatient with me much of the time. And he's started to do strange things like leaving the bedroom door open a crack when he goes to bed. He's never done that before. The first night I was home from Vancouver when I went to bed, I couldn't open the door because something was blocking it. I had to call Daryl to get up to open it. He had placed a small rubber door stop behind the door because it was opening wider than he wanted it to be. I guess he used too much WD40 for the squeeks in the hinges. So I tried to come up with a solution so that he could still have the door open a bit and would still allow me to enter. He freaked out and wouldn't even discuss it. I tried again the next day and again he wouldn't discuss it. Tonight finally I was able to offer a solution and he was willing to try it. I'm so confused about what's going on with him. It makes things very difficult as a caregiver. :-(

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