Caregivers after the homecoming

[garyw]

Posts seem to be coming in pretty slowly from the caregivers - I suspect that they are either too busy or too exhausted, or both!

My husband is scheduled for surgery in a couple of weeks. I would be interested in knowing what the most difficult part was in being a caregiver, in the early stages of when the SCT family member came home from the hospital.

Judine

[peilynne]

Hi Judine,
Okay, as I am on my laptop and my husband, Dan is on his computer in the same room, I ran this question by him. His answer:
When I came home from the hospital at first I needed equipment. He had this in place. Depending on your husbands condition upon release he may need the following equipment:
commode
bath bench
hospital bed
manual wheelchair
urinal bottle/soakers
I know the Red Cross rents this equipment out for short term needs. I still require all mine, and we have purchased it.
When I was first released we were not getting home care in for the first three months. These are nurses that assist with my showers and dressing. We now have them for 1 hour three times a week. On PEI this service is free. I know Ontario provides this service as my roomate at Lyndhurst had this in place before she left the hospital.
Your own medical insurance may cover this as well. My husband strongly advises this, its a break for him. As well, these nurses are trained to identify problems such as skin breakdowns, rashes, redness etc. You might think you do not want it or need it because we did, but now I would not have it any other way.
Also, at first, you may have a lot of visitors. When we both needed rest my husband would place a please do not disturb sign on our back door saying "Lynne is resting now, please stop by again". It is not rude. You will both need your rest. Turn off your phones and rest!
Please know that Dan and I are thinking about both of you and wish you the best.

[cindylee]

Hi Judine...a lot will depend on the type of mobility you have left after the surgery. Will your husband come home on a walker or in a wheelchair. A wheelchair would be a plus to navigate through your home, even a transport chair that is lightweight would do. The transport chair is light enough for you to fold and place in the car, so that would be ideal. I would definitely have my freezer loaded with some quick things that don't take a lot of work to fix, as you both will be very tired after the surgery. If your husband needs to climb stairs for a potty break, then a bedside commode would be a good thing to have. A shower chair would also help. Also pack in lots of paper towels. That cuts down on regular towel wipe ups. Keep plenty of those blue grocery bags around for quick pick ups. If they offer you a reacher/grabber with a handle by all means take it. It is a handy thing to have for reaching. Your husband may feel a little angry at first if he is frustrated that he cannot do things so quickly. Remember to take time to adjust. A hug and a kiss go a long way. Rest a lot, as fatigue is a huge thing after surgery. Watch lots of TV or listen to music. And remember to take each day as it comes. The first days home are a lot of adjusting. Don't forget to ask for help if you need a prescription or something. It will get easier. Cindy

[donna]

I wish your Husband well on his surgery. I had an ependymoma removed 7/12/07 and spent 1 month in hospital and another month in rehab. I came home in a week chair but could walk with braces on my legs for a very short distance. We did have a shower transfer chair, but I would need help getting and off. The worst part was going to the bathroom at night, we did not have a bedside commode, but probably should have. Since I did not sleep with my braces on my husband would have to lift me to the wheelchair and then from the wheelchair to the toliet. That was very rough on him. Then we went to a transfer board for me to get from the bed to the wheelchair and the same to the toliet. He still had to get up with me each time which was about every two hours. probably 6-8 weeks after I got home I was able to get up myself and walk to the restroom with the walker at night. I am still on the walker but things may change in the near future. I just found out that my tumor is growing back, have to go to the Barrow Institute in Phoenix to a specialist. I just hope I will still be ablt to at least walker with a walker after that. I think they will be doing another surgery. My profile is under Donna

[Cheryl]

The hardest part for me was I was really tired trying to balance work and making sure everything was in place for my husband while I was at work. Keeping the medications straight was a big one. We kept a medication diary so medications did not get missed or doubled up. Especially since he was on so many medications (10+) and I wasn't always there to give them to him. My husband also came home with a walker, shower chair, and handles and extension for the toilet. Get rest whenever you can and keep visitors and activities low key and to a minimum. We just enjoyed being together without all the distractions. Also, learn to ask for help, it's amazing how many people are willing if only you ask. This was a really hard one at first for me.

[rihld]

My husband, Leonard (see people page) had his surgery in Jan. 2004. He is now 58 years old. I have been his caregiver and wished there was a caregivers forum back then. He is fairly mobile though, walks with a cane, but has numbness from chest down. His intermedulary ependymona was at T4 and completely resected. I'm trying hard to remember those days following his surgery.... His rehab was great and they lined up all his equipment he would need before he came home (wheelchair, walker, transfer board, etc.) They were great and our insurance paid almost everything. I remember mostly that it was me having to do EVERYTHING and it was the little things that got to me: getting the mail, taking the trash out, driving, bringing in the groceries, EVERYTHING!!! Even now, it gets to me sometimes but it's so much easier for me to do them than for him. He is permanently disabled and has been on social security disability. I try to stay positive because remember, this is not his fault. Nobody wants this to happen to them. Be positive and stay busy, but remember you need your time away too. I can leave my hubby for a week or 10 days and he gets along fine. He drives with hand controls (which really gave him his independence). I need time away from him as I'm sure he enjoys his time alone. He is a landscaper, self-employed, who still runs the business, just can't physically do the work. But he makes all the contacts for jobs and lines them up. He's been in business for 33 years. Take care of yourself too. I've always been a yoga person and still practice it plus other exercise. Yoga is a great stress reliever. If you ever want to get in touch, just email me at [e-mail]. Another great resource for us was our local county rehab center. They provided a scooter with hydraulic lift for his truck and also redid our bathtub and made a walk-in shower with seat. All paid for by the county. Good luck!

[stephbubs]

Judine,

My husband had an ependymoma at C7 removed 3/01/06. He was in the hospital for a little over a week and in rehab for two weeks. This doesn't sound like much compared to what others have posted but we were told he would be going home from the hospital in 3 -4 days. No mention of the possibility of needing rehab. So the whole aftermath of the surgery and rehab were a huge shock. We have 2 young children and those first few days after the surgery I felt very torn. My husband needed me and my kids needed me. Thankfully my mother in law came to stay for 2 weeks to help me with the kids. Be sure to line up family support and plan on spending lots of time at the hospital. Keep a notepad with you so you can write down things the docs, nurses, etc tell you. Also, it's very important to considergetting some mental health support. You will make it thru the aftermath of surgery and rehab; what is really hard is facing the day to day struggles over time. I will be praying for you and your husband.

Stephanie

[garyw]

Just got back to reading the posts. I am finding the pre surgery time to be very busy, hectic and frustrating. Just to get me prepared for the after surgery time, I guess.
After having a consult with a nurse who will be in charge of the unit Gary will be on after surgery, we were told to wait and see what he would require before getting any equipment. However we saw a bath chair and tub handle on sale in a store 40% off, and figured these we would be needing for sure. I also noticed those long handled picker uppers in the Dollar store - rather poor quality as you would expect for the price - but I figure having a better quality one in the area Gary needs it the most would be a good idea. Then several cheapies around the house in different areas, so one is always nearbye.
I am already finding out that doing EVERYTHING myself around the house is going to be exhausting.
I know of one instance of a care giver developing cancer herself after an extemely difficult time with her husbands SCT surgery and resulting deficits. I think the strain can take a heavy toll.
I have the utmost admiration for those who are managing to cope, and hope I will be able to do the same.

Judine

[cindylee]

Judine, one of the best things to do is pace yourself. And make at least one short quiet time for you, even if it is only 15 minutes a day to start. The little burst of that alone time will do wonders to pick you up. Cindy

[nancy]

Judine, just checking in to see how you and your husband are doing? I cared for my sister and found I needed more support than I realized.
Thinking of you both - Nancy