Caregivers Primer

Knee Replacement at 86, The Second Knee

Haven't posted in awhile because mom needed me.  Her first knee replacement back in October went well.  So well, that she was trying to do as much as she could with the new left knee and put too much pressure on the right knee.  Her arthritis flared up to the point that she was risking damage to the replacement because she was favoring the arthritic right knee.

(Comment:  If you are getting a knee replacement, talk to your doctor about the recovery process and discuss the condition of both knees.  You might want to consider getting both done at the same time.  We wish we had.)

While the surgery January 27 went well, the rest of the recovery was a disaster.  Mom had taken multi-vitamins and iron tablets in advance because she'd had to have a blood transfusion after the first surgery.  (Note: A large amount of blood lose is common with this type of surgery.)  After this surgery, she needed a transfusion and there was a problem.  Her veins are small and fragile and something went wrong, sending blood into her tissues instead of into the veins and her arm turned black/purple from hand to shoulder. 

She spent 5 days in the hospital instead of 3 and was still tired and worn out when she reached the rehab facility.  She arrived on Sunday and by Thursday, she was feeling bad.  By Sunday, she was really weak and not eating much but no doctors made rounds on the weekend.  No doctor showed up on Monday and Tuesday afternoon, I was furious.  She could barely stay awake and rarely answered questions.  I managed to get her to drink a bit of milkshake but she was very weak.

To back up a little, she was in a double room, by the door.  That meant all her roommate's visitors had to go past her bed.  The roommate had family and friends sitting with her from 6:30 in the morning until she fell asleep at night, in 2 hour shifts.  She didn't need them, she just wanted someone to wait on her all the time.  Who knows what germs all these people brought in.

So Tuesday, I cornered the doctor and told him her condition, he ordered tests STAT at 4:45 PM.  The lab people didn't get there until nearly 9 and we didn't get results until 11. 

Pneumonia and dehydration.  She went to the hospital in an ambulance and I spent all Tuesday night/Wednesday AM in the ER with her.  She wasn't really awake and conscious of her surroundings until Thursday morning.  She was so weak that I had to go to the hospital 3 times a day to feed her until the next Tuesday and continued after she was strong enough to eat on her own to make sure she did. 

(Comment:  If you have to leave rehab like my mother did, be sure your surgeon is notified so physical therapy can be ordered while in the hospital.)

After so many days in been, not exercising as she should have, the knee had a lot of scar tissue and was quite stiff, but the physical therapist helped her a lot and taught her some tricks on how to get up and transfer to the chair next to the bed, and gave me a list of exercises to do in addition to the therapy sessions. 

We decided to go home and not back to rehab for several reasons.  One, when she'd had the first knee done, she developed a continuing cough that lasted for weeks after she got home.  This time, it was pneumonia.  Two, we weren't happy with the frequency or availability of the doctor making rounds.  Since mom wasn't completely over the pneumonia, we just couldn't risk her health by going back to rehab. 

(Comment:  Ask questions about doctor availability and what happens when you or your loved one gets sick when you're looking a rehabs.  Remember that rehabs and nursing homes have a large number of older and ill people, and visitors, in a pretty confined space.  Before you have surgery and go to a rehab, you might want to get flu and pneumonia shots for both the patient and any family members who will be visiting them.)

Our doctors agreed and she came home with an oxygen machine, a hospital bed, and home health.  Her nurse comes twice a week.  The physical therapist comes 3 times (the first week was 5 times).  Back home with my cooking, her favorite foods, and my nagging <grin> for her to eat and drink more, she progressed real fast.  After 12 days at home, she only needs oxygen at night and haven't used the wheelchair for 5 days, just her walker.  She's doing great!

It was hard for us.  I have been having more pain in my spine than normal (I have a degenerative spinal disease, but some is probably from stress).  Running back and forth from the hospital and rehab, taking care of our two dogs at home, and all the other necessities of life, has really been difficult.  I was always exhausted and thought it would be better once she was home.  I hadn't thought ahead to the fact it would be 24 hours a day instead of three times.  But skipping the 6 trips to town and all that gas money was a blessing.  I could only leave the house when I could find a neighbor to come sit with her since we have no family in town.  (By the way, our manufactured home here in Florida is for sale- I'm writing this and listening to the fireworks from Disney World just 12 miles away.  We have to move back to Atlanta near family.  See sidebar) 

I've been too busy and tired to do any writing until the last couple days, but now that she can get around better and is eating more, I am able to find a few moments to myself now and then.  I'm putting together a web site for the sale of our home and getting other things sold or packed to get ready to move.  The pain in my spine varies so I have a few good hours here and there.  We'll manage, though slowly. 

Mom got very depressed in the hospital when she was so sick.  It took a surprise visit from her grandson (he traveled over 400 miles on his Harley-Davidson) to help cheer her up.  Now, she's making progress and feeling better.  We'll get through this together.  One day at a time.

Caregivers - Knee Replacement at 86, Part 15 - Home Health After Surgery

Mom got home a few days ago and it's been rough since she she caught a bad cough at rehab.  It's the risk you take when confined with so many older people and all the visitors.

Unfortunately, in our case, mom is back in the hospital for 2 days (she'll come back home tomorrow).  She went to our doctor Monday morning with the complaints of the prolonged nighttime cough, weakness, loss of appetite, and shortness of breath.  She has lost 11 lbs since her exam before the surgery.

(NOTE HERE:  Check with your doctor about diet BEFOREsurgery.  Some doctors tell you to eat a lot of carbs and gain a few pounds because you will lose some after surgery.  Probably not as much as my mother did - from 107 down to 96 - but some.  Your doctor should be able to tell by your current weight and physical condition if you will lose after surgery or not.)

One of the tests our doctor ordered was a Cat Scan of the chest to rule out any pulmonary embolisms after the surgery.  This is pretty routine.  Because of mom's possible allergy to the contrast die, they changed the scan to one that has to be done through the hospital ER.  After several tests, all negative, the ER doctor decided to admit her anyway for the shortness of breath and dehydration.  Just a minor setback and she will be home tomorrow, the day before Thanksgiving.  Now, I don't know how much I will get her to eat on Thanksgiving, but we'll try.  She needs to get her weight and her energy back.

HOME HEALTH

The agency assigned to us has been very responsive.  She came home on a Thursday and the Nursing Supervisor came for the initial evaluation on Friday.  Saturday, the Occupational Therapist came for an evaluation of the house, how well she could get in and out of bed, the tub, toilet, etc.  She was set to come for the first visit on Monday but, obviously that didn't happen.  The Physical Therapist was planning her initial visit this morning but, again, that was postponed.

But the overall plan is to have a nurse once a week, physical therapy 3 times a week to start, then cut down to 2 times, and the occupational therapist will be 2 times a week to work on upper body strength and balance.  

With that kind of schedule, she'll get all worn out again.  LOL

With best wishes to all for a happy Thanksgiving,

Kathy 

Caregivers - Knee Replacement at 86, Part 14 - Coming Home, What's Next

Thursday was the day!  Mom was able to come home from rehab.

On Wednesday, the physical therapist did the final evaluation measuring range of motion, etc.  She had mom sign forms to say the therapy was completed,

Since I had already talked to the Social Services director, she didn't have to do an in-home visit.  We already have a commode chair(if needed), a wheelchair and two 4-wheel walkers with seats.  (One I bought years ago at a yard sale, and last year because of leg injury, home health ordered a second, light weight model.  We keep the heavier one in the house and the light one in the car.)

Thursday morning, the discharge when relatively smoothly.  The duty nurse went over all her medications and gave me what was left of the ones I didn't have for her at home.  We signed a couple forms and we were free to go.

At Home

The effort of getting in and out of the car and getting settled in the house was a lot for her and the first thing she did was go take a nap.  Her endurance level seems lower than when she was in the rehab, but that is partially their fault.  She caught a bod cough at rehab.  The chest x-ray the doctor ordered was negative, but the two medications (the generics of Musinex and Robotussin) just weren't enough.  She stayed awake most every night in rehab and her first night home.  Large numbers of patients and guests in a confined facility can make it hard to prevent illnesses, like this upper respiratory thing, from going around through patients.  

SUGGESTION:  monitor your patient's health when in a hospital or rehab, and make sure that they get timely medical care.  I should have been more conscientious about asking her about the cough each day, and then insisting that the medication be increased or changed when she didn't improve.  

On Friday, her endurance dropped even more, especially since she had been coughing most of the night.  I phoned our doctor and he called in both a stronger cough medication but also a 5-day treatment of antibiotics.  We have an appointment with him on Monday.  We're going to discuss her weakness and lack of endurance, her shortness of breath and whether or not she needs oxygen at home at night to help her improve, and her lack of appetite.  If the later continues, she may end up back in the hospital for IV fluids, so I try my best to get her to eat and drink, a little at a time, every hour.  I have been making milkshakes with Boost and Ensure. 

MILKSHAKE RECIPE:  1 cup ice cream, 1/2 c milk or Boost/Ensure or other supplement drink, 1/2 tsp vanilla extract (or almond or mint), and 1 tbs sugar.  Blend well.  This makes one serving.

======================

Home Health visit 

SUGGESTION:  In our case, the rehab assigned a home health agency to us and sent them her paperwork.  We didn't have a choice.  But you may have an agency in mind and want to use them (see side bar for suggestion on hiring home health agencies and aides).  If so, be sure you discuss your choice with the social services person several days before you are scheduled to leave so the referral will be sent to the correct agency.

The Home Health nurse came on Friday to do the initial evaluation.  She asked a lot of questions about mom's background health as well as her current condition (her personal medical history came in handy again - see side bar under pages).  The nurse took her vital signs and asked us to call her after we saw the doctor on Monday.  We signed the papers saying we agree to their services.  Fortunately, they accept what Medicare deems normal and acceptable, so there is no out of pocket cost.

We discussed what mom had for durable equipment at home (walker, wheelchair, etc.), how often we'd see the nurse, and what the plan was for continuing physical therapy.  We also went over mom's lack of appetite and what I could do to help her regain her strength, though it will take several weeks.

Home Health will be providing a nurse's visit a couple times a week, physical and occupational therapy.  That all starts on Monday, so I'll let you know how it goes.

Take Care

Kathy

Caregivers - Knee Replacement at 86, Part 13 - The Care Plan Meeting

First, I want to thank the many readers who have been following along with my mother's adventure with the knee replacement.  I've received a number of nice comments and i can see that documenting our experience with the operation is helping others.  That's what I was hoping for.

Today's topic is the Care Plan Meeting.  I'm sure different facilities will use different names but it is a way for the patient and family to meet with the care team to determine how the patient is doing, where there are any problems to be addressed and when it will be time to go home.

QUICK SUGGESTION:  If possible, schedule a planning meeting within a few days of the patient's arrival.  Get an idea of what the facility plans for your patient, what goals the patient will be working towards, get to know the people involved in the patient's care, and set a tentative date for the update meeting.  This makes it easier for everyone to be on the same page.  We had no guidance at the beginning to know what was going to happen or what the goals were for her progress, so we didn't know if she was meeting them or not.  When I got a letter from the facility inviting me to this Care Plan Meeting it was a date nearly 3 weeks after mom started there.  At that time, I thought she would be home before that date, so I clearly had no idea about what we were facing.

At our rehab, the meeting consisted of the nursing supervisor, the head nurse, the primary physical therapist, the occupational therapist, the nutritionist, the activity director, and the social services director. 

The nursing supervisor started by introducing each person.  Then she talked about mom's progress to date. 

This is the time to ask your questions.  For us, two main concerns were mom's sleeping problems and her weight loss.

The physical therapist talked about how hard momwas working and the degrees of bending and straightening in her knee.   Mom can now manage stairs (although slowly) and can walk 1500 feet twice a day, much more than she could 6 months before the surgery.  But the therapist also voiced one of my main concerns, the fact that mom has some kind of allergy or other problem that is keeping her up all night coughing and sometimes vomiting.  When she doesn't sleep at night, she doesn't have the endurance to do 3 or more hours of physical therapy each day.  It could be an allergy of some kind or something "going around."  But she has been in so much distress that her vocal cords are affected and she doesn't even sound like herself.

After a brief discussion, we determined that the cough suppressant ordered by the doctor wasn't being given until she had been awake for several hours at night.  The head nurse made a notation to have the suppressant brought in a bedtime.  (Mom got it a bedtime last night and was able to get a full night's sleep.  I wish we'd thought to ask about this sooner.)

The second concern was her weight loss and its effect on her endurance.  It is typical not to want to eat much for the first week to 10 days, but this lasted much longer.  After a discussion with the nutritionist, and the fact that she has lost 6 lbs in less than 3 weeks, her diet is being changed to get her more calories and nutrition.  A 4-oz portion of an Ensure-like supplement will be given to her instead of mile to take her pills.  This has vitamins and 240 calories.  I explained that she normally has three small meals, not the jumbo portions they bring her, and small snacks like a pop tart at 10 and 3, then a dish or ice cream or peanut butter toast at 9 before bed.  (When she had a leg injury in June 2007, she was in the hospital 3 times, 4 of the first 6 weeks and was down to 81 lbs.  The multiple small meals and snacks brought her up to 107 in a year, even with another major injury in between.) 

The nutritionist will add Ensure like drinks to her meals, add ice cream for lunch and dinner, and provide other items, like individually wrapped muffins and graham crackers that mom can keep in her room and eat as she wants them.

As you can see, they did work with us and came up with solutions to get around the problems we were seeing.  If your facility is not being helpful, or flexible in the needs of each specific patient, you may have to suggest that if they can not accommodate your needs, you will have to consider discussing the option to move to a different facility.  Usually, a subtly worded suggestion is enough to get them to work with you rather than lose your business.  One lady I know lives in a retirement community and said that if they couldn't help a specific problem for her father, she would have to talk to others in her community to see where a more appropriate place would be for him.  They didn't need an outright threat to understand that she would let a lot of people know they weren't happy with the facility and encourages others to avoid it.  Fortunately, we took a lot of care selecting this facility and it worked out well for mom.

This is also the time to discuss other concerns.  Perhaps your patient has a roommate that keeps them awake by snoring.  Or a roommate is allergic to tobacco smoke and, even though the roommate is taken outside to smoke, it clings to their body, hair and clothing, enough to cause breathing difficulties.  Or the person across the hall is hard of hearing and falls asleep with the TV up very loud.

You can also talk about visitors.  Maybe you have someone coming in from out of town and they need to be allowed in after normal hours.  Or you want to schedule a visit with a pet.

Mom used this ploy when faced with all the staff wanting her to give up her desire to go home today and stay for another week or more.  They gave her reasons, her need to be stronger, more independent, and build up her endurance.  She finally, reluctantly, said she would give them one more week (although not the full two weeks to the initial goal date) but only if she could see her dog.  LOL  Since I knew that the facility did allow small well-behaved dogs, I was ready for that possibility.  On the way to the meeting, I had dropped off her 5-lb long haired Chihuahua at the groomers.  They gave her a bath, cut her toenails, and even filed them smooth to reduce any risk of scratching mom's fragile, paper thin skin.  I was able to go pick the dog after the meeting and bring her in for a visit before mom went to her afternoon therapy.  It was a joking bribe but it made mom happy, so it was well worth the effort.

For those of you who might not have the same title at your rehab facility, the social services person at the meeting has the same type of responsibilities as a case manager in the hospital and does the actual release of the patient.  They also help coordinate in-home as well as extended PT after discharge as needed.  If appropriate, it is the social service director that does an in-home review before release.  This in-home review determines if the patient needs any medical equipment or services before they can be released, like a wheelchair or walker, a chairr for the bath or wall mounted handles in the tub or toilet area, a commode chair, home nursing services, or even oxygen.  Once these needs are determined, the director makes sure all the items or services are ordered and in place, before the patient leaves the facility. 

I hope this gives you some idea of what a planning meeting is for and how you can use it to your advantage.  As I suggested above, if you can schedule a brief meeting as soon as you arrive, even if it is only the social services person and the nursing supervisor, that would really help you get a handle of what is going to happen while you are there and what to expect.  It will also let you know who to go to when you have a concern, something we just didn't understand.

I wish you all well.  Take care.....

Kathy

Caregivers - Knee Replacement at 86, Part 12 or Part 1A - things I learned too late

Well, mom is in Week Three of rehab and I'm learning all kinds of things that I wish I had known near the beginning of this saga.

Questions to ask your doctor before surgery........

1) Would exercising before surgery help or harm the patient?

in January, a neighbor of ours, Kay, is going to have both knees replaced...at the same time.  Her doctor is having her do exercises now (mid-November) to strengthen the muscles around the knees and help her recover more easily. 

This wouldn't have helped my mom but it will be something for me to remember when it comes time to have my knee done in the spring.

2) Diet before and after surgery.

Kay's doctor also said for her to eat well, lots of carbs, before the surgery.  She might gain a few pounds but she will most likely be losing weight right after the surgery because most people don't want to eat much for the first week or so. 

For us, mom has lost 6 lbs in 3 weeks, but the doctor is keeping track and in case she loses too much or too fast and he has to intervene.  He told me today that the state law (Florida) is so strict that if the nurses notice a dramatic weight loss, they will "...pick at me until I do something about it." LOL

3) Diet and Blood Thinner

Many doctors start patients on blood thinners, like coumadin (warfarin), at the time of the surgery to help prevent clots.  The prescription may last into rehab or after the patient returns home.  You need to be aware of this medication, whether the patient comes home or is in rehab and you are bringing in food from outside.  According to an article from the Mayo Clinic, (http://www.mayoclinic.com/health/warfarin/AN00455) new research says you do not have to avoid all foods with Vitamin K, but you should not go over the recommended dosage (120 mcg per day for adult me, 90 mcg for women),  The best choice is to stay consistent with what you ate before taking the drug.  Vitamin K foods include soybean and canola oils, spinach or broccoli, garlic and licorice. 

Beverages on the other hand seem to contain more vitamin K so you should avoid taking Coumadin with cranberry juice, alcohol, or other drinks high in vitamin K, like green tea.  Ask the doctor is your patient is taking a blood thinner, how long they will need it, and if there are any dietary restrictions.  My "second hand knowledge" is that it is dangerous, even possibly fatal, to mix Vitamin K and certain drugs, so be sure you know what your loved one is taking.

Drug interactions and symptoms to watch for are in another Mayo clinic article. Warfarin Side Effects.  http://www.mayoclinic.com/health/warfarin-side-effects/HB00101

4) Blood Loss and Iron Supplements

Many patients are told to start iron tablets before surgery to help build up their blood because this particular surgery is noted for the loss of more blood than some other surgeries.  My mother is small (101 lbs) and frail.  Instead of just iron pills for the first two weeks, she had to have a transfusion on day 3 after surgery.

In the hospital, the doctors often prescribe medications that you don't notice, so before you go home with the patient, be sure you ask specific questions on ALL the medication they need in addition to what they normally take, like the iron pills, because you may not get a prescription for an iron supplement and it might not get mentioned in your short visits with the doctors...or in our case, I wasn't there and mom's hard of hearing and missed what the doctor told her.

And know if anything is being substituted for a regular medication.  You will want to know what the new one is, what it is replacing, and when you switch back to the old one. 

Conclusion -

It all comes down to being a well informed patient or caregiver.  And be sure to adjust your patient's Personal Medical History (see sidebar) so you will have everything about any new or temporary medications and details of the surgery for future appointments or complications.  Be sure to include the doctor and their contact information, the date and place of surgery, etc.

A note about older patients with knee replacement surgery....

Don't let your patient compare their progress with that of other patients.  As we know, all surgeries are different.  Whether it is the age or the patient, their physical condition before the surgery, or just differences in endurance and pain level, everyone recovers at a different rate.   I was catching my mother fussing that this other woman doing so much better than she was.  The therapist finally explained to me that the woman mom was comparing herself to was only 61, 25 years younger than mom's 86.  Of course she was recovering more quickly.  Be sure your patient celebrated each of their personal milestones and not be concerned with what others can or cannot do.

Take care of your patient and yourself....

Kathy

Caregivers - Knee Replacement at 86, Part 11 - Rehab Week Two

Week Two - Sunday to Saturday    Advances and Frustrations. 

Advances

The therapists tell mom she is doing very well.  Because of her age, she isn't improving as quickly as she would like but both her physical therapist and occupational therapist say she is progressing just fine.  She still takes a pain pill with breakfast so it has time to work before she she heads to therapy.

Her knee now bends better.  Friday, the measurement was 82-degrees.  Saturday, it was 90 degrees.  She is still having some difficulty getting her knee straightened out, but the measurements the therapist does every day shows she is doing better each day.  

While some younger knee replacement patients are making 3 rounds of the therapy room on their walker, mom is only doing 1 round before needing to sit down and rest.  Of course, at 86, that's to be expected.  She was also pretty sedentary in the months before the surgery so the three-four hours of therapy a day is pretty stenuous for her.

Her pain level is reducing steadily and she no longer needs medicine for nausea like she did during Week One.  The staples were removed on Monday and the incision is healing well. 

Occupational therapy has her doing upper body exercises (like lifting weights) to give her more strength to get in and out of bed or a chair.  She can confidently get in and out of the tub, use the toilet, transfer from the bed to a chair to the walker, and balance to get herself dressed.

In occupational therapy, they are also teaching her to climb stairs, like using the left knee (the replacement) first, then hold on to the railing to bring the good leg up.  I reminded her that our door opens outward and she only has the use of one railing (strangely on the left at one door and on the right for the other), so she told the therapist and they are practicing with one railing instead two.

Frustrations

Her main complaint is not from the surgery.  She has some kind of allergy that is keeping her up most of the night coughing.  The nursing staff consulted the doctor and he ordered a chest x-ray (negative for pneumonia) and ordered some cough syrup.  The problem with being awake most of the night is that she might finally doze off about 6 AM.  By 7 AM, the nurse comes to give her one pill, and a half hour later with the rest, just before breakfast at 8.  9 to 11:30 is therapy, lunch at 12, and PT again from 1-3:30.  The exercise would be enough on its own but when she hasn't had much sleep, it's a long, tiring day.  I visited once at 4 PM and she was sound asleep.  I couldn't wake her, and knew she needed the rest, so I just hung up her clean clothes and let her sleep.  I went back with a friend of hers the next morning.

SUGGESTIONS - 

1)  If you can, it's better for you to take your loved one's clothes home and wash them yourself.  The high heat and strong detergent a facility uses is going to be rough on clothes.  Even 3-4 weeks of washing there will fade them.  And even if you mark them well, things will get lost.  When my father was in a nursing home, I found his lap robe on someone else.  It was not only well marked, had a sewn on tag with his name saying it was a gift from his daughter, Kathy, but it was a unique design I created, quilted, and gave to him along with a matching bed-side bag.  There was no way anyone could say it wasn't his.

2)  Staff meeting.  Shortly after mom arrived, I recieved a letter saying I was invited to a staff meeting about her care.  The date of meeting was set 3 days short of 3 weeks.  Very late in my opinion.  If we were doing it over, I would insist on a meeting within 3-4 days of her arrival to see what was planned for her care.  Depending on the particular nurse on duty, it is sometimes difficult to get information.

3)  Your doctor.  Mom has only seen the internist once in two weeks.  He is the same internist we had at the hospital, so we know him.  (She also had him last summer when she was hospitalized)  She also hasn't seen anyone from the surgeon's office.  We expected the surgeon's PA if not the doctor himself.  It was late on Friday when I finally confronted the nurse on duty and said we were confused because she hadn't seen a doctor and didn't know how she was doing. 

Our main concern is who decides when she can come home.  What is the criteria for her progress?  What goals does she need to meet before she can leave?  And once she comes home, will she need any additional formal therapy? 

The nurse explained that the therapists are in contact with the surgeon daily and send him reports telling him her progress, how mobile she is, and even the increase in measurements for the knee bending and straightening.  That was the main information I needed, but we should have been told that at the beginning.  I intend to bring this up on Thursday when I go in for that staff meeting.  Today is Sunday and I intend to call the surgeon's nurse on Monday morning and ask for a report.  I still worry about her not liking the food and not eating enough, which also affects her healing and her energy level.

So my suggestion is to be more involved with the rehab care.  Find out at the beginning what the goals are.  Discuss the milestones so you can know when each one is met.  Attend a therapy session with your patient to understand what they are doing and why, and what a typical session involves.  For me, I know that the exercise machine I have at home approximates what they have her do at therapy and all the rest of the exercises are things she can do at home.  Since she isn't getting enough sleep there, and isn't eating well, I want to bring her home as soon as possible and take care of her myself.  (Note:  My mom doesn't eat much to begin with, she never has, so while the type of food served at the facility isn't what she's used to eating is only part of her problem.  I know what she likes, I cook primarily for her likes and dislikes, and I make sure she has fluids all day and good snacks in the morning and at 9 at night.  Last summer she was down to 81 lbs.  I helped her gain up to 107 and the hospital and rehab stays haven't been good towards keeping her weight.)  If there are no physical reasons for her to stay longer, I intend to bring her home by mid-week.

Keep informed.  Stay involved.  And decide on your own what's best for your patient, then work with your doctor to make it happen.

Take care of yourself and those you love,

Kathy

Caregivers - Knee Replacement at 86, Part 10 - Rehabilitation is Slow

Mom says the first three days in the hospital was mostly pain. The next few days was getting started using the knee, after the initial trauma of the surgery was past, and that got a little better. But now, the real work begins...

Medicare requires a minimum of 3 hours per day of therapy for an in-patient facility and our rehab lives up to that. In the morning, a therapist sweeps mom up in a wheelchair for and hour of Physical Therapy. She practices working the new artificial knee and building up the muscles around it, then taking a few more steps each session with the walker.

After lunch, the activities are repeated. That schedule would be good for most people but at 86, mom is small and pretty frail in some ways.

And rehab isn’t helping her in all aspects of her care. She still has pain and nausea meds. When you add in all the workouts, she stays tired and, because she isn’t eating well, she isn’t as strong as I would like.

We had heard that this rehab had good food.  Unfortunately, mom doesn't agree and she isn't eating much.  She has never been a big eater, but I know what to cook for her to get her eating.  At home, we both look through magazines and agree on new recipes to try.  And she watches the food channel and will have me pull something up on the Internet if she thinks she would like to try it.  I also mix in some of her favorite recipes (see the sidebar).  I make sure she gets small snacks between meals and an evening snack.  When she was real sick last summer, I made the evening snack an ice cream cone or a small sundae.

Last year she suffered a severe leg injury and was in the hospital nearly 4 weeks out of the first 6.  She went down to 81 lbs and I was able to help her get back up to 107.  She only lost a pound while she was in the hospital for 4 days but she's lost two more in the rehab.  She is feeling weak and tired all the time.  The pain medication and the nausea pills don't help at all, but she needs them.

I have an appointment on Monday with the rehab administrator to see what we need to do to remedy the situation.  She is supposed to have two choices at each meal and a special diet if she needs it.  If she won't eat what they serve, I will just have to bring her home, and either get some training in what exercises she needs, or have a home health agency sent a therapist.  I have gone through this too many times to let her get so weak ends up back in the hospital.  

I worry each time when she tells me "I don't think I will make it through this one."  I just keep telling myself she has been very ill in the past and each time, she's gotten through it.  We'll make it through this one, too. 

To help her even more, I check with the facility yesterday.  They do allow visits from small, well-behaved pets.  Mom has a long-haired Chihuahua named Lucy.  When the groomers open on Tuesday, she is going to get the works, bath, grooming, nails trimmed, etc.  Then, I'm taking her to visit mom.  That should help her morale for awhile anyway.

SUGGESTION:  Add to your "What to look for in a Rehab" list.  If your loved one is really into to TV, can't miss favorite shows, or is into sports, you might need to be concerned with what kind of TV the facility has.  While the hospital had dozens of stations on cable, this rehab has just one large antennae and very poor reception of 5 local TV networks.  Very Poor!  Luckily, mom has her crocheting and her "Books for the Blind" on tape and her earphones, so she can keep occupied between therapy sessions.

Until next time,  Take care of those you love...and yourself,

Kathy F

Caregivers - Knee Replacement at 86, Part 9 - Transfer to Rehab

Saturday was another long day, especially for me. 

Mom's hearing is getting progressively worse and we just don't have the thousands of dollars necessary for hearing aids.  Her listening device, a small receiver with headphones, hasn’t been working well for awhile, but, of course, it’s nearly 10 years old.  So Saturday morning, I headed out for Radio Shack, just 4 blocks from the hospital, to get a new one before going to the hospital.  Just as I arrived at the store, mom called to say the doctor had come by and was releasing her to go to rehab.

Now, this was unexpected.  On Friday, her primary doctor was concerned about a rash that appeared just above her bandages.  He was sending another doctor to see her on Saturday (see Part 8).  I mistakenly assumed, from the need to see this new doctor and the blood transfusion she'd had, that she wouldn’t go to rehab until Sunday.  I wasn’t ready.  After purchasing the listening device, I rushed back home and packed her suitcase, clothes for physical therapy, nightgowns and robe, her player and books for the blind, etc.  While there, I called the rehab admissions person to update them.  There were no beds open at the moment, but she checked and said it looked like one woman was checking out at noon and a bed might ready sometime in the afternoon.

So now, I make a second trip to town to go to the hospital at 10 AM.  We talked to the hospital case manager and explained about the bed situation at the rehab facility.  Now, we’d had to do a lot of mental juggling to make the final decision of which rehab we were going to use (see Part 3) and we didn’t want to have to take a different one after all that.  The case manager made the calls for us and finally learned that the bed would be available at 3 PM

Rather than spend 5 hours at the hospital, while mom did physical therapy and had lunch, I decided that I would go home…again.  I took a number of things with me to the car to reduce the burden when she checked out.  I left mom with the arriving physical therapist ready to get her up with the walker again.  At home, I took care of some of the chores of daily living, took the dogs out, did some cleaning and washed clothes, and even set up a casserole to pop in the oven when I finally returned later in the day. 

At 3 PM, I was back with mom at the hospital.  The nurses were right on top of things.  All her paperwork was done, the case manager had faxed her reports and records to the rehab and had a package of papers for us to take with us for Admissions.  They even had her room number written on the package.

Since mom could take a few steps, she could transfer into our car and back into a wheelchair at rehab.  If your patient is restricted to a wheelchair or even a stretcher, your hospital case manager will have information about alternate methods of transport to meet your needs.

The room turned out to be a perfect location with a view of the main entrance and the street beyond.  It was a beautiful fall day and several patients were outside enjoying the lawn with their visitors.  

Mom was worn out from the transfer but was soon talking to the other occupant of the room, Gloria, who is just a year older than mom.  By the time I had her clothes hung up and her things put away in the dresser, they seemed as if they had know each other for many years.   

Fortunately for mom, the PT at the hospital and the effort of getting in and out of the car was considered enough for the day and the rehab center nurse told her she had a "vacation" until Monday morning.  By that time, I think we both needed one.

In the next post, I'll talk about her first days at rehab.  They weren't as rosy as we'd hoped.

 

Suggestion 1:  Get your suitcase packed early, keep it in the car, and be ready days ahead of when you think you’re going to need it, just in case. 

Suggestion 2:  Keep in touch with your rehab center admissions manager.  As soon as you decide on your rehab, call the admissions office and let them know you have selected them.  They will have a number of questions about the patient, what hospital they will be in, the date of the surgery, the estimated date for transfer, etc. so they can be sure to hold a room for you.

Kathy F

Caregivers - Knee Replacement at 86, Part 8 - Hospital Stay

Mom had a couple setbacks.  Fortunately, they were relatively minor.  

Day Two (Thursday) went pretty well.  Mom was still coming out of the medications, so when I rolled the cart with the big, clunky CPM machine (see Part 7) out of the bathroom, she didn't even recognize it and said she didn't know what it was.  But the nurse assured me that PT hooked her up to the passive motion machine at bedtime until early morning, and it was just the remnants of the medication that made her forget about it. 

She was up twice, both times using the walker from the bed to the hallway, to the bathroom and back to the chair.  She was totally wiped out, between the surgery and the fact she had been using the wheelchair with almost no exercise for the last month before surgery.  As the medications were finally flushing out of her body, some of the pain and exhaustion took over.  At this point, she was still on an IV and oxygen.

Day Three (Friday) was a bit different.  The doctor made his rounds early and announced that mom's blood work showed problems and she needed a transfusion.  We knew immediately that meant she wouldn't be moving to rehab later in the day as we'd hoped.  In addition, she had a rash on her leg, just above the surgical bandages, and the doctor he wanted to have see her wasn't available until Saturday. 

Since she has lots of contact allergies, we figured the rash wasn't worth being concerned about, but the doctor didn't want to take a chance.  We have had several cases of "Methicillin-resistant Staphylococcus aureus (MRSA, often pronounced "mersa) in our area, including a death of a high school student.  I forgot to mention in the Pre-Admissions post that the hospital does a screening test now for MRSA.  It is a swab that is used to collect samples from just inside each nostril.

Fortunately, neither the transfusion nor the rash proved to be a problem and when I arrived early Saturday morning, mom looked better than she had all week.  Her eyes were bright, she looked happy and even her coloring was better.  I think she had just gotten too worn down over the last few months of struggling to walk and the pain had just been too much.  I was also pleased to learn that even with not eating the day of the surgery and the lingering nausea problems (any heavy pain medication gives her nausea), she had only lost one pound during her stay.

RECAP -

Expect Ups and Downs - The day of surgery will be rough on everyone.  Day One will be kind of a lost day.  The patient may be aware at the time you speak to them, but may forget it all by the next day.  This is why you should be around the day after surgery to be sure nothing falls through the cracks because the patient couldn't remember.

Day Two, the activity begins.  Physical therapy starts in earnest and as the anesthesia wears off, your loved one will be feeling more of the actual pain of the incision, even though the painful joint won'e be hurting anymore. 

Day Three is when many people, those in very good physical condition before surgery or much younger, will probably be going home or to a rehab center.  For my mother, the low oxygen content of her blood made her tire to easily and she didn't improve until after the transfusion. 

(SUGGESTION - Get copies of your medical and lab reports, and have your doctor or nurse go over them with you so you learn how to read them, what the acceptable ranges are and what to do if they are not right.  Remember, your doctor may have hundreds of patients and the lab results are going to come in a week or more after he saw you last.  If you always ask that the lab orders contain a note to send one copy to the doctor and one to the patient, you can look it over when it arrives in the mail.  It is also a good way for you to see for yourself if there has been a change since the last tests, and when necessary, bring it to your doctor's attention.  In most cases, you can just call and leave a message for the doctor's nurse.  Say you noticed something that concerned you on the lab results, say what you are worried about, and ask that the nurse ask the doctor if this is something you should follow-up on.)

REHAB - If you haven't already, by Day Two have the hospital case manager contact the rehab facility you will be using to give them an estimate of when the patient will be transfered and keep in touch if there are any changes.

REMEMBER - The hospital stay is only the beginning.  Once the tubes, wires, and beeping machines are gone, the real work of physical therapy begins.  Our doctor estimates that within 5 to 6 weeks, mom should be back to within 80% of how she felt before the arthritis got so bad.  By 6 months, she will be doing so well she will have forgotten she had it done.

Of course, everyone kept telling her that, even at 86, she would be up dancing soon.  Considering this lady taught line dancing 3 nights a week up until she was 81, I would dearly love to see her that mobile again. 

--------------------------------

Ah, 9:10 PM and I'm hearing the fireworks show from Disney World.  We're that close, 12 miles by car, closer in a straight line.  For the first few weeks, I thought it was distant thunder.  I'll miss our home here but we're going to have to think about selling (see sidebar) and moving near one of daughters because we don't know how much longer we can live here with our medical problems without family nearby.  There are days I wonder which of us the caregiver and which is the patient, but you take care of each other, smile and have a laugh here and there, and live life one beautiful day at a time.   

Tomorrow, Part 9 - Moving to Rehab

Kathy

Caregivers - Knee Replacement at 86, Part 7 - Surgery Plus One

Well, really more like Surgery Plus 17 hours and counting.

Mom didn't get out of recovery and into a room until 5:30 on Tuesday, so by the time I arrived at the hospital about 10:30 AM (I'd had fasting lab work and a doctor's appointment), I was shocked to see her already up and in a chair.  The physical therapist had had her take about 3 steps to the chair, and later, about five steps back.  When her surgeon came by later, she was saying she was surprised to be doing so well in less than 24 hours. 

The physical therapist had her up by 9 AM, just 16 hours after surgery.  He showed her how to get up to the walker, then take a few steps to the chair, turn and sit correctly so her knee would bend correctly.  Later, he moved the bed further away and made her walk further to get back.  She was exhausted but amazed that she managed it so soon.  She said the doctor had been right.  Her only pain was from the incision, not the knee pain she had been living with for so long.

EQUIPMENT -

First, as soon as she reached her room after surgery, plastic legging are placed on each leg.  I didn't learn what they are called but they are similar to an air cast and a machine pumps air in and out in a messaging motion to keep the blood circulating. 

She was also put on a very scary looking contraption that was nicely padded but looked like something that belonged under a car with metal and gears.  It is called a CPM (Continual Positional Motion).  The machine is set to gently flex and relax the knee automatically.  If you don't see one, ask your nurse or doctor about it.  Every therapist I talked to before surgery said the CPM was essential in getting the knee moving right after surgery.  I think it helped. 

NOTE:  Your patient may not remember using it.  Seriously.  As the nurse explained, the CPM machine is placed in the bed with the knee strapped into it just before the patient goes to sleep and removed about 4-5 in the morning.  Because of this, and the residual medication affects, mom didn't even remember seeing it, but I knew it had been used.  Still, it doesn't hurt to check with the night nurse to be sure.

SUGGESTIONS -

*  If at all possible, be with your loved one the day after surgery.  Speak to the surgeon after surgery to know what time he/she will be making morning rounds, so you can be there.  Mom was still on the pain medications and residual anesthesia, so she really doesn't remember that day very well. According to the nurses, it is at least 48 hours before a patient is really themselves again.  Chances are, the patient won't remember much of what was said or who visited them.

In the 2 hours I was there, the surgeon, the internist, two nutritionists, the case manager, one physical therapy tech, a lab tech, and a representative from the rehab facility came into her room.  You need a score card. LOL  If you can, ask for a business card or at least have a notebook handy, so you can write their name and what they do.  Over the first 3 days in the hospital, she had several visitors that either didn't give her their name, spoke too softly or with two much of an accent for her to hear and understand, or worked with one of her doctors but didn't identify themselves.  She wasn't sure who told her what and when.

*  You also need to be sure things promised are done.  She was nauseous from the pain medication and one person from the kitchen said they would send up soup and crackers for lunch but she got a regular meal.  I had to tell the person delivering the tray that it was wrong so they would bring something she could eat.  When I told the second nutritionist, she left for awhile and returned with a bag of crackers, granola bars and Boost pudding so mom could nibble as she felt like it.  Nothing would have been done it I hadn't insisted.

* Be sure that the doctors have your name and cell phone number.  Since mom can't hear well, I made sure that everyone who needed my number had it so they could contact me if there were any problems.  I left several of my business cards in her bedside table drawer.

Day Two had a couple set backs.  See Part 8 for the details.

Kathy