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MadeinMelb
05-03-2007, 05:24 AM
Hi everyone, it looks like I'll be having surgery in the next three months and am starting to wonder if I'll be the only one recuperating at home by myself. Lots of you seem to have a husband or a mum within shouting distance.

I am lucky, I have 3 sisters living in the same city and my mum too. She offered to come and stay with me but it might be a bit hard on her being a nurse (she's 75). I can go and stay with one of my sisters after the operation but I think I might want the comfort of my own bed.

Is there anyone else there who lives alone and how long was it before you were able to survive without a live-in buddy.

One more thing, my shower is in the bath, not separate, and it won't be possible to place a plastic chair in there as it slopes (I might be able to put a shelf across the bath, to sit under the shower). So will I be better off in someone else's house with a flat floor to the shower? And will I be able to step over the side of the bath anyway??

Or is there a nice male nurse out there who'd like to get married real soon? Ha ha.

rainbow2010
05-03-2007, 05:53 AM
You really should have some one with you for about a week. Mainly because you won't have a lot of energy to do anything. As for showers, we had a chair next to the shower for my daughter to sit on when she got out. She was only in the shower for about 5 minutes before she started feeling light headed the first couple of times.

CHRIS WBS
05-03-2007, 09:16 AM
Boy can I relate to what you are saying. I was beginning to think Iím the only member of this forum who is alone. While I have three siblings, they all live out of state and are not particularly interested in offering assistance, and one of them is even a nurse. Theyíre just too busy with their own lives. After all, my younger sister called me a few weeks ago to tell me about her upcoming vacation to Thailand that she and her husband are planning. I have some aunts and uncles in the area who have offered to help me, but for heavenís sake, these people are in their 80s and dealing with age-related health issues of their own. Besides, they donít do that much driving anymore.

Given my circumstances, I have no choice but to forego surgery. What really surprises me though is that a surgeonís office does not put a patient like myself in touch with an agency that can direct you to getting the help you will need. The last surgeon I saw simply said, ďI see you are singleÖyou know you canít go through this alone.Ē No kidding.

If you lived here in the States, I would offer to stay with you, because I know how lonely and terrifying this can be for people like us.

Chris

HGD24
05-03-2007, 11:06 AM
Would your insurance plan cover home health assistance or a short stay in a rehab facility following your surgery?

berta@aloha.net
05-03-2007, 12:05 PM
You definitely need someone, and the length of time would probably depend on where and how much you have fused. I was lucky with a very great nurse type husband. (I know, they are rare) At first we thought my 81 yr. old mother could give him a week break, but no way. I had a long fusion to my sacrum, with a post-op brace that was hard to deal with in the beginning. (getting in and out of it)
Today I am 5 weeks post op and still need some help! Such as getting into pants, showering and reaching certain areas, etc. I finally figured out how to put on my own brace without twisting, and can, if needed, lay a pair of pants on my bed and sort of get my legs into them and then reach slightly down to pull them up! My grabber works for a lot, but not all things.
You need someone for company too, since it is such an emotional experience! And also to help with all sorts of details you don't think of before surgery. I hope you can convince someone close to you to be with you for at least the first couple of weeks, night and day. If not, you need a live in nurse, and maybe your insurance co. includes re-hab IF necessary! Of course, again, the younger you are and the less fusion, and the location of the fusion makes a big difference! Good Luck!!

CHRIS WBS
05-03-2007, 03:48 PM
You are so right, Berta. For those who are older and require lengthy fusions, around-the-clock care and assistance is crucial. Iíve had a few email exchanges with Marcia from Houston (who I notice is no longer posting here) and she could not stress enough to me how disadvantaged I am at being alone. She emphasized that we cannot even begin to compare ourselves with those who are younger and having shorter fusions. She also reminded me about the need to be driven to doctorís appointments and PT. If you live alone and donít have immediate family around you, whoís going to drive you in heavy city traffic for follow-up visits? Your 85-year-old half-witted aunt?

I recently spoke about a 61-yr-old woman who had surgery several weeks ago by Dr. Bridwell. Her husband kept a website journal of her day-to-day experiences. Her surgery was rough, but he was with her the entire time of her hospital and rehab stay along with their two adult children.

Bottom line is that if you are alone and unless you can afford to hire people to take care of you, you cannot undergo a surgery of this magnitude. For those of you, who have supportive families, count your blessings.

Chris

berta@aloha.net
05-03-2007, 04:45 PM
The age thing and the extent of your surgery IS a BIG factor for sure.
All the things you said, Chris, and not to mention the middle of the night, taking meds, since you are pretty out of it and would sleep right thru the right time to take it, and the help to get you up to pee, etc. My husband set his cell phone's alarm for every 4 hours and got up with me each time the first few weeks. Now, at 5 weeks, he still sets his alarm on his phone and just wakes me up and I can do it myself, but not in the beginning! Plus food preparation, and you aren't that hungry, so you may not even eat unless someone sticks it in front of you and tells you to! Plus he makes me walk, goes with me and keeps me company.
Yes, and the driving!! No way, not for me until I'm out of this brace, IF I feel I can even then! There are lots of things I had no clue about, and yes, Chris, I AM very lucky to have this support. I wish you lived near me and I would be there and know the how to's and what to expect!! If you do find someone, let me know, so I can give them all the hints!
I hope you don't have to put off your surgery for too long though. With me, my curves were definitely increasing as time went on, especially at my age, post "M". Oh boy..... (I forget your age?)
Anyway, I wish you the best in finding that support and getting to go for it! I am so so happy I've done it and can't wait to be a few months further along to really feel the affects. All I know is that all the pre-surgery pain and exhaustion from holding my body up all day, is gone.

Keep in touch!

trulyaries
05-03-2007, 06:10 PM
Wow, can I relate?? There are a few of us on the forum that are alone. As you can see by my profile, Iím heading into my third surgery so I have a little bit of experience with coping. I am blessed with a large extended family, most of them close by, but they too have commitments and very busy lives that seem even busier than they were 7 years ago when I had my first surgery. Iím also a very independent Aries, and I almost choke on the words when I have to ask someone to help me. I have some suggestions based on my experience and Iíll try to be concise (not a particular trait of mine!) in the hope that it can help some of you facing surgery alone.

Immediately After Surgery Ė If you are having a long fusion, yes, youíll need someone for at least a week or more, for fixing meals, helping you get around when you need to (bathroom, shower), and for miscellaneous assistance. For my first surgery I put together a calendar and asked my family if they could give daytime hours, an evening, or an overnight. That way they were able to help according to the demands of their schedules and no one had an extraordinary burden. If thatís not possible, my doctor gave me the option of going to a rehab facility for a week. Check to see if your insurance covers this; mine doesnít. Check the hospital for a ďHome Care ServicesĒ department. They can provide some services (I think they provided some free things, like the walker), and referrals for home health aides to come in for as much or as little as you need (meals, shopping, cleaning, laundry). I found one that is owned by two formerly private duty nurses for my hospital. Also, open the Yellow Pages and start calling for info. My Township has an active senior center, and among other services they have volunteers who can take me to doctorís appointments.

Bath Ė Take the measurements for the flat part of your tub. You can find a narrow shower chair that will fit Ė I did. Get a rubber floor mat, hand-held shower head, shower hooks to hang washcloths, sponges, etc., mounted shower caddy that dispenses soap, shampoo, lotion, etc. You can carefully step over and into the tub. If thereís nothing to hold onto, you may need to have some grabber bars installed. I used the hand-held and sat while I showered; my toilet is right next to the tub so I had someplace to sit as soon as I got out. I was able to manage this myself (with someone standing by just in case) as soon as I was given permission to shower.

Personal assistance/hygiene Ė Grabbers for picking things up; long shoe horn for putting on shoes; extra long tongs to hold toilet tissue for those spots you canít reach; raised toilet seat; walker; silky pajamas for easy sliding in bed. Within reach by the bed or on the bed (in pretty baskets): portable/cell phone; reading material, paper/pen; snacks, bottled water, meds, etc.

Around the house Ė Remove any potential obstacles, loose rugs, etc. Put often used kitchen stuff on the lower shelves or counter so you can reach. Find a secure hiding place outside for a set of house keys in case you canít get to the door to let someone in. Make some extra house keys for trusted people who will be helping you. My bedroom is upstairs so I moved my coffee pot into my bedroom (itís still there!) to save at least 3 trips up and down each day. Get a rolling bed table with tilting top like hospital tables but smaller and prettier. (Fits my laptop perfectly.)

Meals Ė Cook and freeze meals ahead of time. However, at first you probably wonít have an appetite for anything fancy, just things like cereal, scrambled eggs, toast, soup, etc. Anything at all spicy or heavy didnít work for me for quite awhile.

For my first surgery, I had someone with me 24/7 for just under 2 weeks. For the second less severe surgery, for about 5 days. For this surgery Iím planning for at least a week, with family providing some services and a home health aide filling in when family canít. I will need someone to come in regularly to help with laundry, shopping, doctor visits, etc., since I wonít be able to drive for 3 months. But I hope to be mobile enough after a week to pretty much be on my own around the house. Everyone is different, of course, so my experience may not be exactly the same as someone elseís. But I hate the thought that someone would avoid having the surgery because they are alone. If you absolutely have no family or friends to help, I believe you need to be pro-active and creative and take advantage of any and all services that might be available to you as well as any and all offers of assistance.

Best wishes and good thoughts for all you ďonesiesĒ out there! :D

amae28
05-03-2007, 06:13 PM
If your mom is in good health i couldn't imagine her not enjoying the company (although rather drugged company) for a little while... then you could go home and look into a home health aid to come help you take showers and cook, etc... i am in college studying pre-med and an aid at a rehab facility part time, so it's definitely an option worth looking into anyways... good luck!!

lelc2002@yahoo
05-03-2007, 06:57 PM
My 80 year old mom stayed a week to watch over me! She was my angel! Ly :)

Janet
05-03-2007, 07:18 PM
I was told by the folks at UCSF that I would be discharged 5 days post-op, even tho I live alone and have 22 steps to front door. My insurance does cover rehab but I was told that rehab / in-home care is done only when OK'd by the PTs at the hospital and you are not discharged until you can walk, and, in my case, climb 22 steps - yet they also said I must have someone with me 24/7 for 2 weeks when I go home, which I cannot afford!

However, when I consulted with Dr. Boachie several weeks ago, he said I would be in the hospital for 10 days, followed by another 10 or so days at a rehab near HSS, before being OK'd for a 5-hour flight home. He said I would need someone to come in to help with laundry, housework, etc, but I would not need help at home with personal care.

There is a "paratransit" service where I live; I will check that out to see if boarding the mini-van to go to PT would be too difficult.

Thanks all for the suggestions - is someone compiling a master list of all the great ideas? ;)

brynnski
05-03-2007, 08:17 PM
Dear Janet,

I, too, live alone. My adult son is coming to take care of me. He'll be here a month, but I'll be in the hospital 8 to 10 days. I've found out that my insurance also covers a certain amount of in-home nursing care. My son asked me to start this while he is with me, since he'll need a break. Good idea!

I'm glad that you have found out that your insurance does cover rehab services. I don't think that good surgeons want to leave their patients out in the cold.

Trulyaries: Once again you've been a real help. I printed out your suggestions and plan to use them. Thanks!

My surgery is in less than two weeks! It's Tuesday, May 15. Today I had my pre-anesthesia appointment and my "Spine Class", put on by my hospital for people undergoing back surgery. Of course the others in the class weren't going to be having as extensive a procedure as I will be having. The anesthesiologist group is finding me an anesthesiologist who is at least supportive of medical hypnotherapy in helping surgical outcomes. I've been going to a hypnotherapist who is working with me on this. It is a real comfort! So I have my CDs (made by her), instructions to say to me during surgery, etc. that will help. They will let me play my CDs via a headset during surgery.

Brynn

misspaula
05-03-2007, 09:30 PM
Dear MadeinMelb

I can empathise and sympathise. My 25 year old son lives with me, but I can't see him helping me with intimate stuff like toileting and dressing! He can cook, but he'll have to learn to shop for groceries.

My Mum is 81 and has said that I could stay with her, but it might be too hard for her and she worries so much. And my Dad is 86 and not well. But my sister lives near my Mum so she would come over and help, especially if I needed to be driven to Dr's appts. I'd have to get my bed transported to my Mum's place so I'll be comfortable.

My elder son and his wife have said that they would come and stay with me, but I don't think I would feel comfortable with that arrangement either.

I'm no help to you I'm afraid, but I feel for you. It's a lot to organise. And it better be organised before the op, because we won't have the mental or physical strength to sort it out afterwards!

Good luck to us all! So nice to hear from others with such practical suggestions.

Joan50
05-03-2007, 11:31 PM
If you set your house up to ensure independence, you can do quite a bit. I enjoyed the company of someone sitting with me, but I wanted to do most everything myself. The help I needed the most was the second surgery a week later to clean out the infection. I had to have the bandages changed often and my sister helped with that.

But the rest was easier to do myself because I set up my room and my house before surgery.

I had no trouble stepping into the tub. In fact I have a bedroom on the second floor and by the time I left the hospital, the PT had me practicing walking up and down the stairs at the hospital.

The doctor can send you to rehab for a while if you have no help at all at home.

Somethings I did that were helpful are:

- putting a wireless remote control on a lamp in my room so I could turn on the light in the middle of the night
- buying a kitchen timer to wake me up for meds in the night or remind me during the day
- keeping a journal of medication doses and times so I could map out the time to take the medicine each day and check it off when taken.
- having a grabber for reaching
- having a walker for stability and confidence
- preparing meals in individual servings before surgery
- having comfortable clothing that buttons in front
- have a comfortable chair with a table beside it for items of need such as medication, chap stick, tv remote, eating utensiles, kleenex, phone

My sisters and friends were a comfort to have around but I was showering, toweling, walking with walker, changing clothes, warming food in the microwave(I had a microwave and fridge upstairs) and walking around for pain relief and exercise in my room and hallway on my own the first days home.

I still have a great deal of pain six months later but I am working full time, driving, swimming, shopping and going to the movies with medication for pain every five to six hours. Hoping to keep moving toward less pain as time goes by.

It is boring to be alone but there is not much to do but rest and take of your bare essential needs. I wouldn't cancel surgery if you had even a minimal amount of support with friends and neighbors to check on you and take out the trash, bring groceries, fetch stuff, and be on call for emergency.

Joan
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MadeinMelb
05-04-2007, 02:49 AM
Dear everyone, thanks very much, I am overwhelmed by the rich information here (but by all means keep it coming!). I'm still reading and I'm gonna print it out and show my family so they know what their responsibilities are, then start a project plan!!!

Very grateful for everyone's help - I would not be doing this at all if I hadn't found this site and also met people who have answered all the dumb questions.

I think I have the option of rehab but need to check my insurance. Then I will get a roster going.

Chris, I hope you can get some support to go ahead with your surgery. Like someone else said (Aries?) I hate asking people for favours but maybe if you did go ahead some kind souls would come out of the woodwork. I hate to think of someone not getting the medical help they need just because they are alone (but I realise this is the reality sometimes).
Love to all
Gen

trulyaries
05-04-2007, 10:34 AM
A few more thoughts: Joan's comments "set your house up to ensure independence" and "there is not much to do but rest and take care of your bare essential needs" are right on. And a positive attitude can go a long way toward moving you toward independence. You must be cautious, of course. You should have someone there until you are able to test out your reaction to medications and how much mobility you are comfortable with. I have to rein in my Aries tendency to go full forward, head down, and take things slowly and with deliberation. Before my first surgery I was even expecting to go up and down the stairs on my butt like a toddler if necessary (not necessary). I too had occupational therapy before I left the hospital to practice going up and down the stairs.

And it IS pleasantly surprising to find out how willing people are to help. A friend who lives very close by and works at home offered to take my house key and be my "emergency" caller if I need a prescription picked up, some groceries, backup for my family, etc. She can be at my place a lot quicker than anyone else. For Christmas following my first surgery, I made pillar candles for everyone who helped me out with the saying "We are each of us angels with only one wing. To fly we need only embrace each other." Saying thanks is important too.

Heading into my third surgery, I am giving myself permission to sleep, watch TV, and read as much as I want, activities I'm usually too busy for otherwise. Somehow this helps me to mentally accept the limitations I will have for awhile.