Caregiver asking for suggestions

[PAgrandma]

I'll soon be a caregiver for my husband of 50 years.

Most of the messages I've read are from people who have gone through this difficult surgery experience... not those like me, who can only help and worry.

I found this forum some weeks ago and have already had answers to some questions I couldn't even think to ask. My husband is a healthy 77 year old who is scheduled for TKR on March 4th. He's "stiff" but not in terrible pain at this time and X-rays show no cartilage. We will be going together to a Pre-Surgery Joint Replacement Education Class next Wednesday which will probably cover most of what we need to know... but I doubt they're going to tell us, for instance, if it's more comfortable if we sleep in separate beds (is it?)

What do I need to know that came a surprise to you? What do I need to ask that nobody told you? I'm sorry to be so nervous.

Thanks for "being here"
Joyce

 

[Jamie]

Joyce, bless you for being a proactive caregiver. Your husband is a very lucky man and it sounds as though you have a wonderful, caring relationship.

My guess is that you will learn more from reading on this forum than you get in the class, but it is still a benefit to go learn about the facility where the surgery will be done and what the process will be. You might want to make a written list of questions for the class after reading some of the posts here....to find out things like...is a walker provided or do you have to bring your own?, will your husband have home therapy or outpatient?, will a CPM machine be sent home with him?, how many weeks of therapy will be provided?, will a Polar Care or other icing machine be provided? (if not, you might want to consider purchasing one as it is SO MUCH better than using ice packs, and other questions that are in your mind. If you don't write them down, it's easy to forget something while you are busy paying attention to the class.

I don't think there is any need to sleep in separate beds. It would be your choice. After the surgery, you move around a little during the night, adjusting body position, but not all that much. The important thing will be to ensure that he gets his pain meds on time during the night. We put a small TV tray right beside the bed that had my crackers (you need to eat something along with the prescription pain meds), pills, a clock and water close at hand. I kept a written log of the times for my pills because it was easy to forget when I had taken them if I was just taking them out of the bottle and not writing the time down.

There are probably a million other things people can tell you, but each person's situation is different. Just don't hesitate to come to the forum with any concerns or questions you might have. Someone will be here to help.

Oh, and if you have access to a stationary bicycle, that is THE BEST way to start stretching the new joint and get range of motion back. They'll use one in therapy, but it's much better if you have one at home to hop on now and then during the day (and, sadly....during the night when you can't sleep - that comes about 4 weeks after the surgery).

So take good care of him....he'll need LOTS of rest, icing and elevation of his knee above the heart during this very long and somewhat difficult recovery. But, in the end, it will be worth it. This surgery has given so many of us our lives back and I hope the same is true for you.

Here's a (((HUG))) for you, the caregiver!!! You are one wonderful lady!!! .....Jamie

 

[1jt@atime]

Joyce,

Jamie gave you some excellent advice and I wanted to share an alternative to the bicycle. Like Jamie said, having a bicycle in the home for exercise between PT is very important. I didn't want to invest in a stationary bicycle and bought a bike peddler as shown below. They can be purchased at medical supply stores or online at places like eBay or Amazon.com for about $20-$30. Keep this in mind if you don't have a stationary bike in your home. Mine worked great and served the purpose well.

Your husband will need a LOT of help and encouragement from you but please don't be nervous. He'll tell you what he needs and I just bet you will be there to help him out. Please post again with questions so that we can help you through this. Caregivers are welcome too. Karen

 

[Nursepair]

Joyce, you sound like a fantastic person to have around after your husbands surgery, my hubby was great. What is his name by the way?

I manged to sleep in tne same bed fine, but my husband Kevin is a good sleeper. There was a time when I couldn't sleep much (for about 2-3 weeks) so was up and down a lot. That would be a great time for your husband to get aquainted on this forum as there are often times when you just need to find someone online to vent to or just ask questions. (If no one is online at that time tell him to read some older threads, especially the Life Style ones as we have a lot of laughter here too). I would also go downstairs and lie on the sofa with my leg up and use a belt to do some stretches wich would often be enough to settle the leg down. Or get on the bike and go back and forth as it took me a while to go all the way round. I found using a body pillow at night helped also. I used to drape my leg along it, better than several pillows, it was more supportive and never moved around, I sleep better on my side.

The day I had surgery not much pain as my leg was still frozen. There will be a lot of pain later so it will be important he takes heavy duty painkillers on a regular basis. Look for Jo's pain chart, it will explain all. Jo can you remember which threads they are in?

One thing I never knew about was that I would need stool softeners because of the medication, He will need to take them, I never usually have that problem and didn't think I needed them, at first!! I was wrong!! Nor did I know the recovery would take so long, I thought it would be like my other knee surgery's to remove cartilage. I was so wrong. I thought I was a wimp and was very depressed, until I found this Bonesmart Forum, and made a lot of really good friends, even though we have never met.

He will need several aids too, a walker, a cane, a toilet seat raiser, tub stool, ice packs or an ice machine etc. Check out some other threads, there is plenty of info or someone ese will let you know soon.

Anyway, hope to see you here often, ask as many questions as you like.

Good luck, Sue

 

[Sandy R]

Hi Joyce... I was caregiver for my husband's 2 separate TKR's (he's 75). The first few weeks will be the hardest for you... until he's able get around, especially if you have a 2-story house like we have. I did opt to sleep in the spare room. That way, if he couldn't sleep in the middle of the night, he could turn on the light or the TV, without worrying it would disturb me. He went home from the hospital with a crutches and toilet contraption (never used the toilet riser) but I had to get him a cane and shower seat. The shower seat is really important. I got one that was adjustable at Horton & Converse. I left a brass bell on his bedside table in case he needed me, that way I didn't strain to hear him... the bell worked great. I also made a log of 1. all his medication intake + date and time 2. each time he iced his knee, 3. each time he did his home exercises given to him by the in-home PT 4. the times he used the CPM machine. I had a pitcher of water and glass by his bedside at all times. And, make sure you have stool-softeners ready when he comes home... he'll need to take them, especially while he's taking heavy pain meds... they're very constipating. There might be times your husband will feel down or even angry... his outlet will probably be YOU. Be patient with him and give him lots of hugs and encouragement.
Good luck... Sandy

 

[Coppernob]

Hi Joyce. Welcome to the forum where I'm sure you will find all the advice you need. I'm not a carer but a new knee recipient 3 times over. After my first surgery for partial replacements in both knees, my husband and I did go into separate beds for a short while but after the further operations which were just on my left knee, we simply changed sides in the bed. We had always slept with Paul on my left, me on his right. By changing sides so that my left knee was on the side of the bed furthest away from him rather than right beside him, it meant there was no danger of Paul accidentally kicking or knocking it. I'm sure you'll find the simplest solutions are often the best! Linda x

 

[Josephine]

Pain chart as requested!

 

[PAgrandma]

Good morning, and thank you all for helping us get started on this long road.

I'll be reading your responses a dozen times each before posting again after work today. Yes, we both work... but it's our own business, so we'll be taking time off to get this more important job done!

Joyce (and husband, John)

 

[PAgrandma]

Again, many thanks Jamie, Karen, Sue, Sandy, Linda and Jo for quick responses and great advice to help my husband, John.

Jamie, I'll certainly write down my questions. As a "note taker" from way back this part should not be hard. A friend will be loaning us a walker, but other than that... I'm making a list. The icing machine was an unknown until on this site. Which brand is preferred? Polar Care, Aircast or another? The table tray with meds, water, snack and "log" will be called the "Jamie" table from now on. (Our son's middle name is James but we call him Jamie!). Elevating the knee above the heart will be a challenge. Hope the education class can show us how. When John's able would his "recliner" be a good or bad idea?

Karen, I think John will be more agreeable to the peddler machine than the stationary bike. I'm going to search around for that. The picture you attached is a big help in knowing what I'm looking for. We've given each other a lot of encouragement and help over the years from sciatica to punctured colon and beyond. It's been quite a trip. I probably won't post again until after the "class" next Wednesday... but I'll be reading everything every day.

Sue, Thanks for your good luck wish. As you probably know by now, my husband's name is John. Actually it's Albert... but that's only used on legal documents. I'm going to try to get him to go on line with you guys but he's not comfortable with computers yet. Just uses it to get his next film from Netflix. I've saved "BoneSmart" forum in "favorites" so perhaps as the day gets closer... we can hope. The pain John will be facing is a big concern. Quite frankly, his pain level is not good, usually requires a topical anesthetic to have his teeth cleaned! This recovery is going to be tough. The body pillow sounds great. That's on the "must" list. Which stool softener is suggested. I take Miralax daily since my colonoscopy fiasco, but this may not be strong enough.

Sandy, fortunately we now live in a one story Cape. About five years ago we sold our home of 35 years (good timing, right at the top of the bubble) It was a two story stone house built in 1820 with very steep circular stairs! Must have been preparing for this day that's around the corner, I guess. We built on eleven wooded acres near a creek. I am thinking ahead about how to get John from the van to the front door... it's a long walk from the driveway on a gravel path. Guess I'll just drive on the grass... hope it's not going to be muddy.. something else to worry... oh, shucks....for want of a better word. The bell is a fantastic idea!!! I had forgotten that my mother had one after she broke ribs during my childhood! It will be added to the "Jamie table".

Linda, Good to hear how you handled things. Think I've concluded that separate bedrooms would be best.

Jo, Thank you for posting the pain chart. You're going through hard stuff yourself right now. Thanks for taking the time (and please don't lose your sense of humor... love it!)

Well... this is exhausting. Went on so long. After next Wednesday's pre-op class I expect I'll have more questions. 'Till then
THANKS!
Joyce

 

[JenniferG]

Hi Joyce and hubby. Glad you found good info here. QVC sells those peddlers. They have a web site if you didn't know. I had my knees done last March. I think the biggest help a caregiver can do is patience. I am blessed by an incredibly supportive husband and he listened to every little grunt and groan and whimper and whine in pain. He helped with the bathing and shower chair and fetching me ice, ice and more ice. But in reality, after the first week or 2, alot of it was up to me. The exercises, getting up and moving regularly, taking my pills, getting food. We kept simple grob and go type eats so I could fend for myb self as my husband went to work. Folks from our church kept us fed for a week. What a blessing!

 

[Gretchendz]

Good luck and you are asking great questions.

With both my TKRs he slept up in our bed on second floor and I slept on a bed on the first floor. Sleeping separate was more for his benefit than mine as I was up LOTS through the nights at first.

This way I could read, watch TV, or just lie there and moan in pain without worrying I was waking him

As for stool softener, many of us like Docusate Sodium.

 

[Sandy R]

Joyce... icing with the knee above the heart isn't difficult. While my husband was lying down with one pillow under his head, I put 2 pillows the long way, under his leg. That way, his knee wasn't bent and was above his heart. Pillows were very important... my husband used a few under his head to sleep, and in the early stages, propped a few behind him so he could get into a position that wasn't quite on his side, and then one between his legs when he was finally able to sleep on his side. Another suggestion... measure the opening of your shower before you buy a shower stool or seat.

By the way, I'm 3 months and 2 weeks post-op from my RTKR (but who's counting). I guess I must have set a good example as caregiver, because my husband was a big, big help during my recovery!
Sandy

 

[Jamie]

Joyce....a "Jamie" table....I am sooooo honored!!! You are such a good planner I think everything will be fine. There may be some things that no one thought about that may come up, but just ask here and I'm sure someone will have an answer for you.

As for the icing machine, I think both brands you mentioned (Polar Care and AirCast) are fine. The main thing is to get a machine to do that iciing thing so you don't have to be getting up to refresh ice packs every 4 hours or so. You need YOUR rest too!!! Hopefully your insurance will provide one of them (ask AHEAD of surgery), but if not eBay is a good source. The only thing you have to watch for when buying them used is that all the parts are there. Sometimes they don't come with the cuffs that go on the knee!

Oh, and about the elevation....I found that recliners were not all that good because they did not get your leg up high enough. What I did was to lie on the couch and put my new knee leg up on the back of the couch with the ice on it. That seemed to work better than anything. You want to be sure that when you elevate the knee with pillows or something under the back of the leg that you DON'T put the pillows just under the knee itself. To do so can cause blood clots to develop (a bad thing). They tell you to put the pillow (or other support) under the ankle, but quite frankly I found that to be very uncomfortable after not too long a time. I put something under the whole leg (like the back pillows of the couch) so that there was support, but not just under the knee itself. Hope this makes sense to you!!! Best of luck, hon.....you have a tough, but very rewarding job ahead of you. You sound so very capable and I know you can handle it. We'll be here for you if you need help and/or support!!!

 

[Nursepair]

Glad I could be of help Joyce. I can't remember the name of the SS's they gave me. Either the ones they give John in the hospital or trial and error I guess is best. Also watch the diet, lots of fruit and veg, prune juice is good too. I lost a lot of weight whilst on painkillers (put it back on later unfortunately), apetite wasn't good.

You may find that John will get a bit down a few weeks into recovery, normal too, he may decide to join us then, especially if he is awake at night.

I also have a very low tolerance of pain and I coped OK with the help of strong painkillers, so tell John he will too. The pain will subside in time I promise.

Have fun at the class Wednesday and ask lots of questions and take this forum address with you to give to others. Actually there is poster Jo made which you could print off. Jo do you remember where that is?


Post soon....Sue

 

[Josephine]

Sure - it's here

And as for the elevation, I got myself an inflatable cushion to put on my recliner to increase the elevation. Personally, I'm mor comfortable with 'feet higher than the hip' though when I have badly swollen ankles I've put my feet up against the wall which feels great and I soon nod off! However, I'm not sure I'll be able to do that after the surgery - well, not to start with, anyway!

 

[Linda2]

When I had my knee replaced, walking to the door wasn't the hard part--getting in the car at the hospital was excruciating. My knee just didn't bend that much yet. We had to lay the seat all the way out, and then my husband had to get in the back seat and pull me up on the seat from behind. Next time I will have a four door vehicle and will sit against the door with my legs stretched out.

 

[Weezy]

Hi Joyce....I can't add too much to what everyone else has told you...but here are the things that my hubby is going to do differently for this knee (as opposed to what he did when I had my last TKR):

1. He will give me pain meds and MAKE me take them, instead of believing me when I said I didn't want or need them.

2. He will be more insistent that I eat regularly and eat more--I wasn't hungry at all for weeks, and not eating much didn't help my body recover as quickly as it could have. He'll also fix me more protein dishes.

3. He will NOT listen when I whine about PT and say I'm too tired or hurt! Instead of feeling sympathy, he will gently but firmly get me up and moving according to doctor's directions the first few days.

4. He'll make sure the floors and walkways are clear before I get home (instead of waiting until I'm there to discover that I couldn't walk over or around things--he was doing some remodeling!)

Those are the big differences we've found for him. By and large, he was fabulous.

We did end up in separate beds, but only because when I'm hurting and right after surgery, I don't sleep well at all and prefer to have the TV on and off all night, and after a week or so I was up and down a lot at night. He needed decent sleep so he could get up and go to work. so he moved a twin bed into the living room for me and that's where I stayed for about three weeks (our bedroom is also downstairs and the living room is on the main floor).

Mostly just being there and understanding is probably the best thing any caregiver can do! I felt so guilty about not doing things, and felt so guilty about asking him for something. I think I'm over that now!

Weezy

 

[PAgrandma]

Wow, you folks are really something.
I wasn't going to post again until after pre-op class next Wednesday, but just so much good input and support... couldn't wait.

Jennifer - I will check QVC about the peddler machine. I've been told by a local friend that John's doctor will be sending him home with some kind of ROM machine that will get him started. Simple grub sounds good (especially since John's a better cook than I am)

Gretchen -Two TKRs ! How are you doing? I will get some Docusate Sodium. Being apart in two rooms does seem to make sense... but I've got to purchase a "bell"... not sure where to purchase it.

Sandy - The full support of the leg with pillows is on my "must" list. You and Jamie both let me know it's important. I wish we had just a shower to measure, but unfortunately all we have is a shower within a "garden tub" (I think that's what they call it) Anyway, it has a large "lip" that John thinks he'll be able to sit on. We're going to practice it before the big day. So both you and your husband have been through all this. Perhaps my turn will come too, so I'd better do a good job!

Jamie Table (new name)- Can I borrow your couch? Ours just doesn't fill the bill. Back too high (no cushions) a colonial style. Is this a good excuse to buy a new one? Your instructions for support were perfect and made a lot of sense. It was also the first mention of "blood clot" prevention which is now added to my question list. About getting the ice machine... John will be having the other knee done too so it will get more use, tho I do have several gel packs that are 9" x 16". We'll see how the budget goes. Capable, I don't know about that... but I try.

Jo - Since John has a recliner, and my couch is not suitable.. it looks like the inflatable cushion could be the answer! I will take your poster to pre-op
New members on the way.

Linda - The transportation problem was one of my first concerns and you hit the nail (or the knee) on the head! We have two vehicles... a van which is a very high step up but does have a side door and maybe John could sit on the floor with his back to the passenger seat. The second car is an antique Cadillac... that one would REALLY be uncomfortable.

Weezy - That list of what you wish had been different was just what I wanted. So many times I would have liked to do things over, but hopefully on this adventure I can learn from you. It was so clear and to the point. Sounds like you have a good relationship going! (glad you're over your guilt)

ONE MORE question... not medical
When I respond on this thread should I use "post reply" or "post quick reply"?
I've been using the first choice as these messages haven't been very "quick"

Thanks again, all
Joyce

 

[Josephine]

I had a look on Ebay for hand bells - anything from old granma's bells to cute little china ones! Take you pick - none too expensinve, I think.



As for the reply buttons, the is for when you want to quote more than one post which you do using the multiquote button on each of the posts When you click it, it goes orange and then you hit that post reply button.

However, if you just want to make a straight reply, just type it into the Quick Reply box and post.

 

[Jamie]

Joyce, you'd have to fight my new puppy dog for the couch, so I guess your best bet is to use the foot lift and your recliner to elevate. That should work. I used 4 ice packs the same size you have (didn't know about the machine when I had MY surgery) and they worked fine. I used them two at a time so I could pretty much wrap around the whole knee joint. It's amazing how good it feels to ice the BACK of your knee as well as the top and sides. I even went to bed with them at night (wrapped in a dish towel so it wouldn't be too cold) but had to have my husband get up in the middle of the night to replace them with the other two. He was a sweetheart to do that until I was able to get up on my own. But they do work fine also.

I always use the Quick Reply, cuz it's just easier.

Man, you are going to be the Star pupil in your class!!! The doctors and nurses will be so impressed. Glad you have gotten lots of good advice.