Please consult your physician/medical personnel to make sure the same applies to you. These are things that I found out through dialysis, VNA nurses and doctors. The information just got me thinking:
1 - A POTATO NEEDS TO BE SOAKED BEFORE COOKING IF YOU HAVE KIDNEY ISSUES, TO REMOVE POTASSIUM.
2 - SULFUR BASED MEDICINE CAN MAKE YOU SICK (VOMITING & DIARRHEA). WHEN MOM STARTED EXPERIENCING VOMITING AND DIARRHEA WITHOUT A VISIBLE CAUSE, WE CHECKED INTO MEDICATION (PRIMARILY ANTIBIOTICS) AND FOUND, SINCE SHE HAD KIDNEY ISSUES, THAT MEDICATION THAT IS SULFUR BASED CAN CAUSE THESE PROBLEMS.
3 - THERE MAY BE GOVERNMENT FUNDS THAT CAN HELP YOU MODIFY YOUR HOME TO HELP FAMILIES WITH DISABLED CHILDREN & ADULTS LIVE IN THEIR OWN HOMES EASIER & INDEPENDENTLY.
4 - PHARMACISTS ARE GREAT RESOURCES FOR MEDICINES (BOTH OVER-THE-COUNTER & PRESCRIPTION) WHEN YOUR REGULAR HEALTH PROFESSIONAL IS NOT AVAILABLE & YOU NEED A QUESTION ANSWERED.
PHARMACISTS GO THROUGH AN EXTENSIVE TRAINING PROGRAM WORKING IN HOSPITALS & NURSING HOMES BESIDES THEIR CLASS WORK.
5 - SINCE MOM IS ON COUMIDIN, WHICH IS CHECKED FREQUENTLY AT DIALYSIS, SHE HAS TO WATCH HER INTAKE OF GREEN LEAFY VEGETABLES.
6 - MOM USES AN INHALER -- WE WERE TOLD SHE NEEDS TO RINSE HER MOUTH OUT AFTER USING IT TO PREVENT THRUSH.
7 - WITH OLDER WOMEN, IF THEIR PERSONALITY CHANGES SHOWING SIGNS OF CONFUSION, FORGETFULNESS, EVEN ANGRIER THAN NORMAL OR ANGRY AT THINGS THAT USUALLY DON'T BOTHER THEM, CHECK FOR A UTI. UTIs IN OLDER WOMEN DO NOT HAVE THE SAME SYMPTOMS AS YOUNGER WOMEN.
8 - WHEN ON DIALYSIS, PEOPLE EITHER DO NOT URINATE OR URINATE VERY LITTLE.
9 - A DIALYSIS NURSE TOLD ME IT IS A GOOD IDEA TO KEEP TRACK YOURSELF OF YOUR WEIGHT AND POTASSIUM LEVEL (WEIGHT IS TAKEN EACH VISIT, POTASSIUM THROUGH BLOOD WORK). THIS WAY YOU WILL HAVE INFORMATION READILY AVAILABLE FOR DOCTORS IF NEEDED QUICKLY. ALSO YOU CAN TELL IF THERE HAS BEEN ANY MAJOR CHANGES AND HOW TO HANDLE YOUR DIET.
More things I Did Not Know - Updated.
Ok -- I know there are tons of things I don't know but every once in awhile I learn something. Please check with your medical professionals regarding the following to see if it applies to you or your family member.
A - With dialysis shifting to the fistula in the arm, we now have needles going into the arm 3 times a week and being on coumidin the blood gets thin. Therefore there tends to be more bleeding. When the bandage is put on the arm when the needles come out, it is more of a pressure bandage. We normally take it off the next day; what happens is that it starts bleeding again. One of the nurses suggested that we get the old bandage wet/soaked and slowly take it off. What happens is that a scab has formed and will get pulled off therefore starting the bleeding. This way, when the bandage is wet, you can slowly peel it off and there is little or no bleeding. It works!!
B - Fluid intake: mom is only allowed 32 oz of fluid each day. This includes any drink ( water, coffee, tea, juice - the usual). She also has to take into consideration eating things like watermelon, celery, popsicles, and anything similar.
C - Mom wanted a permanent. She checked with her hairdresser and was told NOT to do it. When on dialysis, hair will not hold a permanent -- it will only last a few days if done. Apparently you lose hair too due to dialysis and it will not grow back.
D - Mom still has an ongoing problem with 'the runs'. We have not found anything that really works. whether it is a prescription or over-the-counter. Things work for a short time, then it starts again. We went to her Gastrointerologist and he looked at the new list of meds she is taking and remarked that she is not taking anything for her colitis. She has not had any symptoms, like abdominal pain or stomach issues, that would suggest it. So I checked the MAYO CLINIC website (love it!!!!!!) and sure enough, 'the runs' is a symptom of colitis. So he put her on another non-sulfur prescription med (sulfur based meds make her nauseous). Hope it works!! It looks like it has started to!!
E - I learned this from a school nurse. Need a sure-fire way to get blood out of clothes or sheets or towels?? It has even worked for dried blood. Get out hydrogen peroxide and liquid anti-bacterial soap. I have NOT used this on any silky type of clothing yet - only cotton and blends. AS ALWAYS- test on a small area first to make sure it works OK. Turn the item inside out (with sheets or towels it really doesn't matter). Wet the blood area with cold water, then put peroxide on the spot - just enough to cover the blood. Let it bubble up and turn white -- just like it would on a wound. Let it stay for about 30 - 45 seconds. Then rinse with cold water. Get your liquid soap and put enough on to handwash/scrub the same bloody area. As you continue to scrub the blood should be vanishing. Rinse again with cold water then throw into the clothes washer for a regular wash cycle. So far I have not had any spots left on my items.
F - When starting out with a VNA service, make sure the nurse sees all the meds the patient has, including over-the-counter. For some strange reason, my father-in-law had his first visit at home, after a hospital stay, and the nurse did not look at his meds. Big NO-NO!! They should always be looking at them - at each visit, constantly updating the meds and the dosage. Usually the PTs and OTs will do the same during their visit since they sometimes have different computer systems so the information does not always get shared. It is a good time to get blood pressure levels, heart rates and oxygen levels - write them down somewhere and keep track. It helps the doctor if you have the information when you go for follow-up visits.
G - Both my in-laws have VNA nurses at the moment. At the beginning they each had their own - best to try and have 1 nurse service the 2. It is easier to keep track of them and what they need. This way too, the parents get to know one person and build a relationship with one person, get to know the personality of the nurse and how she works.
H - Again, please check with your medical professionals: mom was diagnosed for a long time with 'impaired kidney function / hydronephrosis'. She also had other medical conditions (heart, thyroid, stomach, bladder, bowels) and she was not eating well. We had heart foods, stomach foods, etc - you get the picture. Anyway, she needed vitamin C so she drank orange juice, she liked bananas, we were told that Ensure (which she liked) would help if she did not want to eat. When she went into kidney failure in December (going to the hospital with congestive heart failure due to kidneys not working and a UTI), we started to go through what she could start eating and guess what -- limit the OJ, limit the bananas and NO Ensure. Apparently, all these are not good for people with kidney issues. There is a drink similar to Ensure specially made for kidney patients (don't remember the name at the moment -will try and correct this, it is something like Nepro) but she did not like it.
Elderly Parent Going Home From the Hospital?? Reminders!!
The "ElderCare" website states that almost 1 in 5 Medicare patients ends up back in the hospital within 30 days after leaving due to lack of communication & medical mismanagement. Many may find themselves not knowing what the next step is. Although it has been MY experience that prior to mom leaving her many hospital stays, a variety of case workers and nurse managers have stopped into her room, making sure that I was there, to talk about her going home, lining up VNA (Visiting Nurse Association) visits, making sure her doctors know what is going on. The local VNA office has called promptly - like the next day- to arrange to come over for intake. Through them we have gained access to home care aides, CNAs (Certified Nursing Assistants) to help with bathing & dressing, physical and/or occupational therapy.
It is only MY opinion after reading this article, that families need to make sure there is a member they trust who can speak with the nurses and make sure a family member insists on knowing when the nurse manager or social worker will be stopping in to see the patient to discuss release. At that meeting, you can gain a lot of information, make sure that trusted family member receives the call as well from the agency visiting the parent and BE THERE at the meeting at the parent's home. The elderly parent can get confused easily as there usually is a lot of information being discussed. Parent doesn't want you there?? Find a reason to drop by. In the long run, it is best to be a nudge when it comes to their medical issues.
Help in Remembering Health Information
Trips to the doctors (mom has 9), can be overwhelming sometimes, with her being on so many medications and having so many issues. I decided to get a book, like a diary, so I could bring it to each visit (though I have to say I don't always remember - but I am getting better!!). This helps me keep track of what we talk about: blood pressure information, weight, reminds me of changes in medications (and when it was decided and by which doctor), etc. I just write what we talk about, questions asked and answered, and what to do in the future (like tests, X-Rays, CT Scans, etc). I also keep a list of all the medications she takes - dosage, how many a day and when it is taken. Also make sure to include vitamins or over-the-counter items, even nasal sprays and eye drops. This information has come in handy lots of times as each doctor is not on electronic records and does not always send information from one visit to the next appointment. It has also helped when we have made trips to the ER.
I wish there was a way to put the information on a flash drive/memory stick or something like that - download the medicine information from the pharmacy every so often. That way the hospital or doctor could just download it into their system. Hopefully soon, all doctor offices will be on a general electronic system that can pull updated information easily.
I can also see a flash drive/memory stick type of thing being useful to hold a copy of a Power of Attorney or Living Will since most of the time hospitals are asking us for a copy, especially if she is being admitted.
The Dialysis Center now helps me keep track of her numbers too. A dialysis nurse with the VNA suggested that it would be a good idea for us to keep track of her weight, blood pressure, and potassium level, so we could see any changes or see her getting better. It also helps us to monitor food choices - if her potassium level is good, we are on the right track. If not, we have to take a look at what she is eating and make changes. I had a daily pocket planner that I thought might work and it does!!! I take this pocket planner to doctor appointments in case they want to see what has been going on, I have also started including upcoming doctor appointments so the dialysis nurses know if they should send information before we get there.
All of this right now is overwhelming but I can see it getting easier as time goes on and it becomes a habit.
Sarcopenia
I am not in the medical field - again, just sharing information I came across. Please make sure you check with your medical professional to discuss the information.
The 2013 winter issue of The American Institute For Cancer Research Newsletter, Issue 118, had an article - 'A Healthy Weight for Life'. It shows how poor eating, especially with seniors, can have people become overweight, then they are inactive - both can increase their cancer risk. The condition of 'sarcopenia' is when muscle mass and strength decline more rapidly with aging. Sarcopenic obesity is a combination of being overweight and frail.
Rose Clifford, RD, LD, MBA, Nutritian Consultant at Iona Senior Services in Washington, DC., explains that "less muscle strength makes physical activity more difficult, which leads to further muscle loss and weakness". She suggests a combination of strengthening and aerobic exercises, like walking which raises your hear rate. Best to get at least 30 minutes of daily moderate aerobic exercise. Three times a week for at least 20-30 minutes, strength training should be done.
Of course, eating right is also stressed. Cliffords says what's key is maintaining a healthy weight. Serious medical conditions, like heart disease, can show themselves through sudden or unexpected weight gain. Linked also to higher cancer risk and chronic disease, is carrying extra weight. Unintentional or sudden weight loss can lead to bone or muscle loss which can cause immobility and insufficient nutrition.
Eating nutritious and minimally processed foods can satisfy and lower your calorie intake. The article states that instead of counting calories, set a goal to eat 2 - 3 cups of vegetables and 1 1/2 - 2 cups of fruit each day.
*make a fruit smoothie for breakfast
*eat vegetables for lunch so you don't have to fit them all in at dinner
*fill up on vegetables and fruits instead of chips, sweets and other unhealthy foods
*focus on what TO eat rather than what NOT TO eat
Protein is also big. It mentions a study that shows that 'older adults need more protein than younger adults do'. Ms. Clifford suggests eating 30 grams of protein at every meal to boost muscle mass and strengths.
*breakfast - opt for eggs, peanut butter or low-fat dairy foods like Greek yogurt
*lunch & dinner - lean meats, fish & chicken, nuts & beans
*nutrition labels - find high protein breakfast cereals with 8 grams or more protein per serving and other whole grains
*choose milk or soy milk over fruit juice.
As Ms. Cliffords sums it up at the end - "Maintaining a healthy weight by eating well and staying active will increase your independence and quality of life".
Incontinence:
Caregivers have a lot to deal with. I remember with mom - it was cooking, laundry, paying bills, going to the doctors, going to dialysis, bathing, to name a few. In an article I read, it stated that the National Alliance for Caregiving finds that the average family spends 20 hours per week caring for a loved on - 13% provide 40 hours or more of care. 29% of the U.S. population provide care for a chronically ill, disabled or aged family member or friend.
One problem that can make things difficult, and embarrassing, is incontinence. The National Association for Continence states that more than 25 million Americans experience bladder leakage. Now there is a wide variety of undergarments that work. According to the article, they are made of high-tech fabrics that hold more fluid than cotton adult briefs and are more discreet. There are also bladder control pads. I remember mom used to take a small bag in her handbag with several briefs and cleansing pads. They did come in handy.
Your family member may need to try a few different styles to see which ones feel the most comfortable and offer the best protection. Also check with your Urologist to see if he/she has any suggestions.
C.Diff:
I am not a medical professional. I read this article in the Sunday Providence Journal, 11/25/2012, and thought I would share it. Please - always consult your medical professional to see how he/she feels about the information I am referring to.
The following is probably not for the faint of stomach. You might not want to read this while eating either.
While reading this article entitled "R.I. doctor tests surprising treatment for devastating infection", I thought so much about my mom. With the constant UTIs and antibiotics, trips to the hospital and more antibiotics, mom ended up with a lot of diarrhea. So the doctor would test for 'clostridium difficile', otherwise known as 'c.diff.'.It is a bacterial infection - chief symptoms are abdominal pain and persistent, watery diarrhea. Sometimes she had it, sometimes not (sometimes just getting back on her colitis meds helped).
According to the article, it typically affects frail, elderly people who often acquire it while in the hospital after taking antibiotics. The main culprit for 'c.diff.'?? Antibiotics. These kill off the good bacteria and disrupt the balance of other bacteria, especially good ones that live in the intestines. The article says that about 3% of adults have 'c.diff.' living harmlessly in their intestines - it won't cause illness if there is enough healthy bacteria there as well. A lot of times, a person goes to the hospital and gets antibiotics as a treatment, and picks up 'c.diff.' because the antibiotics have damaged the intestinal flora. So the 'c.'diff.' gets treated again with antibiotics and many times comes back after the meds have stopped. The death rate in the US from this has quadrupled since 2000 to 14,000 people a year.
The article profiles a local doctor, Dr. Colleen Kelly from the Womens Medical Collaborative, who is trying a new treatment, a somewhat 'yucky' sounding one. She is doing 'fecal transplants'. You can read more in "scienceline". After reading research reports and consulting Dr. Lawrence J. Brandt of the Albert Einstein School of Medicine, she decided to try it. She has performed the procedure at Miriam Hospital. There is a screening process involved, like screenings for blood donors. Also both the donor and patient will have time to talk to the doctor. Simply and to the point, the procedure will take good 'poop' from a donor, dilute it with saline water finally taking the 'brown water' and placing in a syringe to deposit it into the patient. So far, she has been getting great results with some people feeling better in a couple of days.
Even with good results, more testing needs to be done, especially using a placebo-controlled group. It looks like Drs. Kelly and Brandt received money from the National Institutes of Health for a 2 year fecal transplant study. Dr. Kelly is also starting a stool bank and is hoping for the day when someone will figure out how to take healthy gut bacteria and make it into a powder that people can take in a capsule.
It looks like some medical professionals are hoping that this will be a simple solution to a big problem, hoping too that it may even help with other bowel conditions.
NPH:
I would like to restate that I am NOT in the medical field, nor do I have medical training. Any information here comes from an article I read then looked up on the Mayo Clinic website for verification. Please - always check with your medical professional for more information and guidance.
I found a story in this past weekends "Parade" magazine. It was titled "What If Grandpa Doesn't Really Have Alzheimer's?". It tells the story of an older gentleman who was starting to show evidence of memory loss over time which was almost misdiagnosed as Alzheimer's or Parkinson's. A neurologist took an MRI and compared it to a baseline image that was taken a few years earlier and found that he had NPH or normal pressure hydrocephalus. This is a
'condition that occurs when the clear fluid surrounding the brain fails to be reabsorbed, eventually leading to problems with memory, as well as bladder control and walking (one of the distinguishing signs is a disturbed gait).'
According to the article, the Hydrocephalus Association estimates about 350,000 Americans have the condition, as well as 5% of those with dementia. In 2005, a paper put out by the Virginia Commonwealth University estimated that 9% of people in assisted living may have NPH.
The good news -- this 'Parade" article and the Mayo Clinic both say that it can be helped through surgery. It would require a hole being drilled into the skull to and a shunt put in to drain the excess fluid. According to Dr. Michael Williams MD, Director of Sinai Hospital's Adult Hydrocephalus Center in Baltimore, the procedure is 85 - 90% successful as long as patients do not have complicating factors like a spinal condition.
Delirium or Something Else:
As mom goes yet into another rehab after another hospital stay, her mental status stays an issue. There was another UTI issue with VRE, an antibiotic resistant bacteria which plays a big part in mental issues. She is confused, forgetful (although recognizes us), and can be combative and agitated. She was sent to this rehab with an anxiety medication to see if that would help. The doctor at the hospital and current nurses seem to think it is an issue of delirium from the chronic UTIs, changes of facilities (hospital, rehab, different hospital, different rehab - you get the idea), and the strong antibiotics she was on.
Now a psychiatrist at the rehab is starting to talk about dementia
since she shows symptoms affecting social and intellectual abilities; these can interfere with daily functioning. It can make you confused and unable to remember people and names (which so far she can). But she has memory loss and impaired judgement and language which are also symptoms. Dementia indicates problems with 2 brain functions. Altzheimers is the most common cause of progressive dementia according to theMayo Clinic.
I know mom was worried about Alzheimers, which a couple of my aunts had; it worried her that she would get it - she saw what it did to them. With this brain cells degenerate and die causing a steady decline in memory and mental function.
So we wait to see if the doctors can find other causes. The other day one nurse mentioned that she noticed a change in attitude (mom got mean) a short time after taking her Vicodin. So now that will be monitored and they can always change the pain medication. We listen to her talk to my dad (gone for 16 years) and go shopping with her mom (gone for 10 years). She doesn't eat much because she wants to save the food for dad and worries about her mom cooking. She thinks people are after her to hurt her, sees people in her room, said she spent time in jail the other day, and thinks a woman, who is also a patient, is her aunt. The dialysis center called and said she has been confused there too and last week gave them a hard time when it came to giving her the needles and getting her hooked up to the machine. I was told that if she refuses treatment, they will send her back to rehab - they cannot restrain anyone or force anyone to take the treatment.
We go day-by-day. This reminds me of my grandparents and dad before they passed on - some good days, some bad; the lack of eating and sometimes drinking is a big telltale sign that I can remember as things progressed to the end. Miracles do happen so you never know what might change. One thing that consoles is that my parish priest, who saw mom a couple of weeks ago and gave her the sacraments, said she knows how things are going and she knows she will see dad and her folks in Heaven and she is good with that.
Mom's condition has been up and down: sometimes she eats, sometimes she doesn't; she'll take her meds one day and not the next; she is talked into getting out of bed by her therapists in the morning, then she'll be telling them where to go, how to get there and what to do when they get there the next time. She's weepy then laughing at who knows what. Mom still recognizes people but her conversations are not based in reality: she's seen, walked and gone shopping with her mom (passed 10 years ago), my dad is still around (gone 16 years) and she waits for him and wants to share her food with him; she talked to St. Peter the other day (not sure how that went - she said he was nice) and the best one -- she talked to St. Nick/St Nicholas/Santa who is planning a party for my grandfather!!! Of course, my grandfather has been gone for 20 years BUT I do know he would LOVE a party given by Santa (he was a big kid at heart). There is more but you get the picture.
She has also started to give the dialysis center staff a hard time - not wanting to get her treatment. They were able to get her twice to go through it but one time, no. She cries and yells at them. We all know her back pain, due to a bed sore and spinal stenosis, gives her a lot of problems. Today though she was able to tell them that they could do the treatment IF they could do it without a lot of pain; so I guess the needles are starting to take their toll. She is constantly in bed or laying on a recliner-like chair. Four toes are still discolored so she can't be on her feet long - in fact I helped her get out of bed and into a chair the other day and she has no strength in her legs to stand. Her main source of relief has been vicodin.
Palliative Care:
Recently at her Care Plan meeting, the head nurse on the floor mentioned hospice. I replied that no one has told me there was a timeline in place for her. She said that hospice now does pain management for those who are having a hard time with their pain source and suggested 'palliative care'. This plan addresses the physical, emotional and spiritual needs of the patient. The primary goal is to improve pain relief and the quality of life. Palliative care specialists work within a multidisciplinary team to support the patient's needs and goals for treatment and care. This can also be done at her rehab/nursing home. While working with the patient, this care also provides support for the family. Someone from the chosen local agency will go in to evaluate the patient to see if and how they can help.
For financial reasons, it is best to talk to the local agency to see how this care may impact you - the Medicare/Medicaid rules can change, so you need to know if it will affect your family finances (anything out-of-pocket). If your family member is in a nursing home, they can handle it for you -- I have already messed up the difference between what mom has now and how this will affect her plans. Also, in mom's case if we do this, the agency that ends up providing her care needs to keep her dialysis center in the loop. As a matter of fact, I talked to the social worker at the center, mentioning this idea and the agencies that were suggested to me by the nurse, and she concurred stating that she has worked with them and liked them.
The local agencies are as follows and some are connected to other agencies in other states: Beacon Hospice; Odyssey HealthCare; Home and Hospice Care. You need to check these out for yourself and chose, or not, what you think is best for your family.
Paperwork to Have On-Hand for Hospitals:
Since December, it has been an up and down ride with mom - hospital, rehab, home, hospital again, rehab again, then hospital (since Easter, 3 hospital stays in 3 different hospitals); you get the idea. Still in the hospital as I write (this is the second hospital in about 10 days), I was asked about advanced directives. Silly me, I thought the paperwork follows her from location to location since this has all happened recently, but apparently not. I guess thinking about it legally, the directives could change at any point in time and the current facility needs the current information, I would assume so they cannot have legal issues should things take a turn for the worse. Again though, I still think the latest paperwork should follow the patient, as the medical information does. This is also why I think the advance directives should somehow be on a flashdrive you can carry around so you don't have to THINK 'did I bring those papers?' or 'where are those papers?'.
I recently received an email from ElderCare specifically about the necessary legal paperwork that everyone should have, which we do, or be in the process of getting. Here are the ones they mention:
*Healthcare proxy. If your parent or loved one is unconscious, who makes the medical decisions? Rather than leave this up to chance at the ER, designate a healthcare proxy to make important decisions. This has to be in place before the time comes.
* Durable power of attorney. This document designates who makes the call for financial and other legal affairs. To ease everyone's minds, it can be set up to take effect only when your parent or loved one is actually incapacitated.
*Advanced directives. Respecting your parent or loved one's wishes when it comes to things like life support is impossible if you don't know what those wishes are. This goes for organ donation and funeral plans, too. Get it in writing for the good of all parties involved.
*A will. For legal reasons and to nip any squabbling about the estate in the bud, it's just a good idea to have a will.
I know it is hard to think and talk about these things but I have to say, mom was pretty open to TELLING me what her wishes were. Then it was a matter of getting an attorney to write it up - make sure you have one you trust so if you have questions, you know you can respect the answers.
Elderly Parents
Our folks are 85, 89, 90 and are changing a lot now, almost by the week it seems. Medical care can sometimes be frustrating; the the meds, changing bodies, and symptoms. The meds that are out there are incredible, especially the numbers of them. Make sure you go to doctors you trust, can talk to and like. Also get to know your pharmacist -- they are great for the non-emergency questions regarding meds. They can tell you how they work, interact, and if there is an allergic symptom, then tell you if there is something else you can take.
If they need help in the house, there are agencies out there to help. We were able to find an agency to help do some modifications in the home so Mom could live in her home and be independent. It took a few phones calls to various agencies but I reached a community action office and they referred me to Ocean State Center for Independent Living who told me of a government grant that they had which covered exactly the work I was looking to do. A rep came out to the house, talked to us and looked around. In a few days, she called back to let us know the work was going to be done. It included grab-bars in the bath and at the main door, a walk-in style shower and a ramp. We were pleased. The people who came out to do the work were great -- they showed up when they were supposed to, got the work done in a reasonable amount of time and were pleasant and respectful. We couldn't be happier with the result. Check around your area to see if there are agencies who can help you and/or your folks with the same.
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