SCT Caregiving- time in hospital

[mkat]

For anyone that has been through a SCT, how long was a caregiver with you? I asked at the hospital how long I should stay with Michael but just got a generic answer. We now have a tenitive date of Feb 1 for admit to the OSU James cancer center and I'm trying to plan babysitting help. Was it important for someone to be there a lot (8 or more hours a day) or is there a lot of support from the nursing staff? I know it varies by hospital but I don't know what to expect and I don't want to be lining up babysitting at the last minute.

Any other cargiving tips you have would be appreciated, we're starting to get nervous.

[ag2006]

My twin sister who is my caregiver only spent weekend nights with me during my SCT at the hospital, but she had to wear a mask and gloves for my protection. The nurses were very accommodating during the 5 weeks I was hospitalized. However, it wasn't crucial to have my twin spend the weekdays/nights at the hospital because I slept a lot and again the nurses took care of everything -- although I appreciated her visits and morale support. Additionally, since your husband is getting an SCT, depending on cancer facilities, limits of visitors are normally set for his protection and ill visitors are not allowed. As to caregiving, I only needed help when I arrived home with meal preparation and housework. My twin spent those weeks I was hospitalized getting my home ready for me (spring cleaning, carpet cleaning, etc.) so that I arrived to a clean home.

As to your husband's needs, I imagine he'll be at the hospital from 3 to 5 weeks and he may get bored. Boredom was my biggest issue when I wasn't sleeping. At the HD side, one of the members started a post called "Hospital Visits 101" which lists helpful items/tips for hospital stays. CLICK HERE to visit the list of helpful items your husband may need. I was lucky to have such a wonderful twin sister who brought everything I needed that I almost felt I was spending the month at a resort!

Sending lots of positive thoughts your way.

Best Wishes,

Anne

[Miss Priss]

I was there with my husband constantly thru the chemo in preparation for the the transplant and the first few days after the transplant. Then I had to go back to work and I would visit on weekends. When he had the auto I spent the first week he was at home with him and when he had the allo I only worked 1 day a week ( we lived 400 miles from the transplant center). While he is in the hospital there will be plenty of nurses and doctors to care for him physically. Chuck was too sick to need me for much other than to hold his hand. I am not saying I wouldn't have been there more if I could but we both understood there were things I needed to take care of and he was in good hands. I would think with having kids you would need to keep things as normal as possible for them. I wish I could give a better answer but I guess what I am saying is you have to do what is best for your situation and family.

[skylin]

big hugs to ya sweety. keep us postd wtth addys too, k? his hosspitl and yuors at home. we wwant to cheer ya all on!
hopefuly ccliff will chime in too. i no deb ws wtth him constnttly, but agen thay dont havv small kiddos. yuo do. itss reely imporrtnt tthat yuo dontt get boggd down wtth depressn and gilt. yuo wil be doingg tth besst yuo can and hubby wwil no tthat. havngg a few ttalks bowt tthat ahed of ttime wil help yuo to hold ontto that whn tth time coms.

HUGS!
HEERS TO HOPE!
sara

[mkat]

Thank you Mel... that is a lot more info than what I've gotten from the hospital. We know we are very, very lucky because we only live 25 miles from the hospital. I do have to fight downtown traffic but I'll never go in at rush hour. If you could only make it on weekends and Chuck was cared for well, that means I could take a day and not go. After his last hospital stay for the biopsy surgery, I couldn't be gone for more than a couple hours. (totally different hospital and we'll never go back there) That really helps.

[mkat]

I'll send you a PM Sara Thanks! Michael hasn't been big on talking about what is happening but I've made him a couple times. I hear he'll be pretty out-of-it for some of the time he's there so hopefully he won't miss me when I stay home with the kids. I'm trying to creat a schedule of babysitting with friends so the kids have some consistancy. They are the best at going to someone else's house b/c we've done it so much.

[lurkyloo]

Anne - thanks for the great link! I bookmarked it for future reference! Great tips there!

Kat - best wishes to you and your hubby as you go through this trying time! Sending positive thoughts your way!

[lisacallenwood]

Kat....
My husband had a BMT and was 'inpatient for about 8 weeks. He was transplanted in Boston (we're from NJ) so I stayed there the whole time. There was really nothing else for me to do but go to the hospital. He slept ALOT - both while inpatient and then afterward when he came to a step-down 'house'.
Actually, he was transplanted in January (I believe)and he pretty much slept until APRIL!!!

Hope that helps....
Lisa

[Rochelle]

I stayed with Walter for the full month that he was there. I slept on a cot that they provided, as a matter of fact his than onc. suggested. The nurses were wonderful but they do have other patients, with me there Walter never had to wait fo anything he needed. I even scrubbed the bathroom daily and change all his sheets. The nurse assitance used to blow me kisses, especially when I gave them my dinner tray.

[SarahSmile]

Hi there, Kat ~ Just popping my head in from the HD side here. I had an SCT (I'm at Day +Sixtysomething at this writing) and my partner stopped in almost every day during my 3-week stay. She had to miss two days when her grandmother died, but every other day she came once to twice a day for total of 2-4 hours. We don't have kids, but she couldn't take off work and we have a lot of pets to care for and the hospital was an hour each way from our home. I went into it with the mindset that I was responsible for getting through it and she was responsible for everything else.

I'd heard that the BMT ward of any hospital is going to be staffed with the most attentive, expert nurses in their facility, and my experience didn't disappoint. A BMT patient is obviously a high-risk patient, so I don't think he'd be left to fend for himself for long if he hit the call button. I wanted for nothing and was cared for excellently over all the bumps in the road.

Each hospital is different. I went to Emory (I'd just moved to metro Atlanta from Baltimore) and my visitors were not limited and there were no visiting hours whatsoever. Also, they were not required to wear masks or gloves; however, sick people were not allowed at all. One caregiver was allowed to stay nightly, but the cot was so uncomfortable I didn't want Lorraine to sleep on it because I wanted to keep her strong and healthy! I have to say that while I missed her a lot, I was really relieved to just turn myself over to the expert hands of the nurses and docs and not dump too much caregiving responsibility onto her during that time. That's what they're there for. Now when I came home, that's when her fun really began! But during my stay in there, I relied on her solely for love and emotional support -- which I didn't need 24/7. During the hardest parts they knocked me out anyway, so I didn't see any point in having her just sit at my bedside worrying. (She could do that elsewhere! )

One thing that we brought that isn't on that list that I LOVED (and so did all the medical staff!) was a string of white (Christmas) lights. They'll check his vitals at least every 4 hours and sometimes they'll come into his room many times a night, so by leaving some lights strung up and plugged in, they didn't have to turn on either the little florescent desk light they have or the overhead glaring one -- and I could try to go to sleep positioned so they could access my PICC line (your husband probably has a Hickman, so he could sleep on the opposite side or his back for minimal disruption) and get minimally disturbed by their visits. (I'd just pull the sheet up a little so I didn't see the light through my sleepy eyelid! ) I never once turned on the overhead light during my entire stay. And the nurses loved it!! It gave the room such a pretty, warm glow -- much less gloomy than florescent lighting!

As for boredom -- I had a good deal of that also, but mostly watched the tube or listened to my iPod. Reading and watching DVDs required concentration, which was totally out of the question. When Lorraine came, I just liked to hear about her day and have her make me smile and laugh. She took my laundry home every day and brought me cans of bubbly water because I couldn't drink regular water. In the first days, when he's still interested in food, bring him foods that he loves so he can enjoy them while he can. His taste buds and ability to eat are going to be shot for a good while to come, and that can be surprisingly frustrating even if you're not into food. Another thing you could do to help is to walk the halls with him -- walking is critical to the health of his lungs and it is a FACT that the more he walks the better his experience will be. If he doesn't walk, his lungs will weaken and he'll be more likely to develop pneumonia. I can't stress it enough. It was the last thing I wanted to do, but I really tried to get in a mile whenever I could (21 laps!) or at least as much as I could pull off. There definitely were days when I felt too unwell or was in too much pain, but those were all after Day 0. (Transplant day.) I can't stress enough the importance of walking, and there were times when I'd have blown it off if Lorraine hadn't urged me to walk with her. The docs said also that the walking was a contributing factor in my counts rebounding so well after engraftment -- and that's obviously huge. I got out pretty fast compared to many, and I know walking played a role in that. So walk with him!

Oh! And you might not need any reminder on this count, but I'll put it out there for those who do: remember to be really appreciative of all those who give him care. Mostly because they deserve it, but also because a little thanks goes a long, long way.

I urge you also to remember to take time for yourself throughout all of this. You are going through this as much as Michael, just differently, so do what you need to do to center yourself and rejuvenate. You need that. I made Lorraine do it, and while she protested at the time, she appreciated it afterwards.

I know I gave a lot more than you asked for -- I really hope something in here was helpful to you. Just know that you'll both get through this. It's an extremely difficult experience, but it's DOABLE. My mantra throughout was "The way out is through" and that helped me. Mention it to him after he's been in there a few days and see if it strikes a chord with him also. (I visualized firefighters or soldiers behind enemy lines -- both fighting heroically against formidable foes with no other choice but to keep fighting their way out!) Also, at the end of each day I'd write the following day's number on the dry erase board so I would wake up to the new day and mark its milestone; it was motivating to know I was knocking the days down and getting closer to the end. This is hard stuff, but you'll move through it and at some point it will be behind you both. Just look for the humor, remember to love, trust the professionals, and have faith that you'll get to the other side to a place of good health and continued remission.

You and Michael will be in my prayers, Kat. Sorry this was so long!!