What would your family's life would have been like if hospice had been called in months ago? Would there have been any difference in the way your BIL spent those last months? I realize that the reports you finally saw were not good. What if those reports had been open to you in a more timely manner? IF you had gotten a second opinion at that time, and the prognosis had still been the same, having hospice as one more source of care would have made these last months easier for your BIL and your whole family.
It seems that what your BIL had been receiving for these last months was just palliative care. It could have been furnished at home with less stress on everyone if hospice had been involved earlier.
Doctors seem to wait until the last few days to even mention hospice. And the family does not have the tools available to make end-of-life care easier.
Perhaps your family had a different experience. No one got overtired. No one had to do more lifting than she felt safe doing. No one was unsure of what to do next because there was no nurse there to ask.
I sincerely hope that your dear family had nothing but the best possible memories of your last times with this much-loved man. For many families this is not the way things were. For them, a service like hospice is a gift that turns those last memories into ones of quiet talks--not backbreaking work.
I have been told that our county has one of the best hospice networks in the state. Perhaps this has colored my judgement.
You have been through a very rough time these last few weeks. You have lost a very important part of your life. You have watched a vibrant man full of humor and love become wracked with pain and fade away. It is a very great personal loss to you.
I understand this loss and wish that the paid and sadnes could be taken away. You are such a loving, giving person that it hurts us all to hear of your pain.
I sincerely apologize if I have offended you in any way. I would never have intentionally added to you grief.
It's free. It can figure the calories in a total recipe for you. It has the calorie counts on just about every commercial brand of everything from flour to TV dinners. You can also get protein, carb, and fat counts on items. It lets you keep a daily log, too. And did I tell you it is FREE!
The trial Radio Frequency Ablation went well yesterday. Today I saw the nurse and we are scheduling the real ablation now. It was only temporary, but for the first time in 42 years, I could stand with no back pain.
If you have been getting good temporary results with nerve blocks every few months, you may be a good candidate for the RFA. Please read up all you can about it before you talk to your doctor.
Having your nerves destroyed by heat (until they grow back again) is not to be chosen without a lot of thought. But it is a way that is working for me--so far. I'll keep you posted. I have heard that this is available for other areas on the spine too--not just the low back.
Have a great (read low-fibromyalgia) day and weekend.
Linda R's post has got me going again. During her BIL's illness they went through all the doctors, hospitals, home care, and the whole mess that happens when someone has a terminal illness.
Hospice can help. Hospice is set up to cover the paliative (easing of pain, better quality of life) care for anyone who is not expected to live for another year. They bring in all the durable equipment you may need whether it is a hospital bed, a commode, a walker, a wheelchair, or any other aid for your loved one's care. They arrange for a visiting nurse, home visits by a doctor, home health aides, and any other necessary help you may need. They supply your sterile dressings, medications, IV supplies. In short, they give you anything you need for your loved one to stay in his own home.
If skilled nursing in a medical setting is needed, whether for respite or for longer term care, they supply it.
They work with your insurance. For most of us, their services are FREE.
Yet, all too often, hospice is called in only within the last few days or weeks. This is such a shame. Families are left to struggle alone with the difficult tasks surrounding 24/7 care.
Why does this have to happen. Sometimes it is a matter of communication. The doctor never tells the patient (or the patient decides--for whatever reason) that he is terminal. Sometimes it is a matter of a family seeking some miracle cure long after this is still an option. Sometimes it is simply denial.
But what if your family is faced with this dilemma, but the patient is still mobile? Hospice can work with you, increasing services as necessary. What if the illness lasts more than the one year you were originally given? Hospice can be extended.
When you talk to friends at their end, the biggest worry they have is the toll this illness is taking on their caregiver(s). When there is someone there to help with the daily bath, the changing of dressings, the I.V., or just being there so the caregiver can do some shopping or just get out for an afternoon it makes a difference for the patient's peace of mind.
We all feel the pain of Linda R.'s loss. Most of us have experienced something like this in our circle of family and friends. Anything that makes this horrible time a little less of a burden is a Godsend.
I know when my mother's multiple mylenoma was ending, we had hospice. But this was only during the last 4 days! What a blessing it would have been to have this extra help for the last 6 months--when I was doing the 600 mile round trip ever other week and cramming in 60-hour work weeks so I could manage those long weekends and my sister and sister-in-law were doing the same.
During my mother-in-law's bout with lung cancer, my husband, son, or I was with her at all times. But for the last 6 weeks, we had help from hospice. The home health aide came every morning to help with bathtime. The nurse came at least twice each week and daily at the end. She was the one who pronounced Mom dead. We never had to pay a penny for all of that loving care. Hospice helps.
When DH got up this morning it was -15 outside with a wind chill of -35. We have dry snow blowing all over the place, but our neck of the country is used to this. They delayed schools for 2 hours today. The HS and MS kids are usually picked up starting at 7 a.m. The buses come back and get the elementary students an hour later. By 9, when the buses were rolling this morning, it was up to -7. Even our (secondary) road had been plowed.
Tomorrow is the trial ablation on the left side. Please think of me around 11 or so. (I'm scheduled for 10:30, but we all know how that works!) I so hope that this works as well as the right side did and that I am soon able to have the real ablation. It's been 42 years since I could stand without pain. I think I'm due.
Please try to stay warm. Don't go on roads that aren't plowed. That's like these idiots who drive through standing water in a flood. Be safe, not sorry. (I have a theory--yes another of Bette's theories--that those of us with fibro are so used to planning our lives to conserve energy that we would automaticly judge the choice of doing something risky or not doing it. And we would always choose the saner path. It comes from the way we have to readjust everything to accomodate our pain and fatigue.)
Brrr. Our high temp today was 7 with a low of -7 and a wind chill of -32. It couldn't have happened at a worse time. Here in NY this is Regents Exams week. Many school districts closed BUT asked staff and Regents students to attend. What a joke. No buses equals no kids in school. The kids will just have to wait and take the exams in June--with 5 months of forgetting and all their normal exams to study for at the same time.
Tomorrow is the only day this week when we don't have any medical appts. Thursday is the trial RF Ablation on my left side. I can't wait to get this done and schedule the real RFA for the left L-2 through the L SI joint. It is weird how it feels to be standing for 2 minutes and having just the left side start to hurt. Hopefully, by this time next month neither side will hurt.
I just learned the other day that my pain doc has been begging the hospital for 3 years to get the equipment to do the ablations. We're back to the money angle again. I just bet that the hospital didn't want to lose all those nerve block patients who come back several times a year. We're a big part of the O P Surgery dept. at the hospital. In the meantime, the doc is killing himself with 3 and 4 days a week of nerve blocks. And, of course, we are still in pain. The RFA is much better (at least for me) at taming my low back pain. It will last until the nerves grow back, and no one knows how long that will be. As usual, we are all different.
I sincerely hope that all of you find the right mix of treatments that can calm your pain down to a level 2 or 3 most of the time. That would be a major help. Most of us can sleep through level 3 pain. It does not interfere with our daily tasks of job, family, or fun .
If you have a lot of low back pain that has been with you for a while, but you are not a candidate for spinal fusion, look into the radio frequency ablation. Burn off the nerves that are only causing you pain.
This has been a rotten time for you. Please believe that it does get better. Bear with your doctor and be willing to try whatever meds she prescribes. Be alert to any side effects. It is all too common for us to be super sensitive to medications. This may make it take a little longer to find a mix of treatments that works for you. Try to be patient. It is a process.
In time, you will get your sparkle back. In the meantime, try to make things a little easier on yourself. Don't worry about your messy house (except for food safety); get a simple routine for hair/makeup, etc.; cook extra on good days and freeze the rest for bad days; find comfortable clothes that look good on; buy yourself some shoes that do not hurt your feet; recognize that there will be bad days and prepare for them.
Your doctor should be able to help you plan for bad days. In addition to your regular medications, you should also have some that you only use during a flare. I have sleeping pills (Ambien) that I use that way. Some of your pain meds can be safely increased on a very bad day. Ask your doctor to help you plan for these days. (When I was younger, they often came with menstrual cramps and were hormone-driven. I could plan ahead with extra water, an extra hour of sleep, super simple dinners, and my extra flare-only medications.)
Part of the terror of fibro is knowing that it will act up and not knowing when that will happen. By having your "emergency kit " ready for those times, you can take away the terror and the feeling of helplessness. I liken it to having your suitcase all packed in your 8th month of pregnancy.
I know that things will get better. Just try to be patient.
Forgetful? Us? I don't remember this ever happening? Wait a minute. What were we talking about?
Nancy B is right on with her steno pad. I like a smaller one that will fit in my pants pocket. And ALL of my pants have pockets. Put up post-its around the house. Remind yourself what you are fixing for dinner and when you have do do what in order for it to reach the table more or less on time.
If you go grocery shopping, bring a list made out with the layout of your market in mind. Paperclip or staple or scotch tape all your coupons to the list. If you have to make a second stop (pharmacy, cleaners, etc.) list it in colored ink both at the top and the bottom of your list.
Once you have a system for remembering what HAS to be done each day, you will find that you had been spending a lot of your day worrying about what you forgot. This will make you more relaxed and better able to remember the odd thing that wasn't written down--for whatever reason.
The most organized woman I know (president of the PTA, her church's women's group, etc.) has a tablet by her bed. She takes time each evening to write down all she plans to accomplish the next day. Then she turns out the light and actually sleeps. First thing in the morning, she goes over her list. That night she crosses off the things she has finished. She carries over anything that needs to be done on the new day. She congratulates herself on all she has done. Then she adds the new tasks for the next day as above.
I find this works very well when I am not in a major flare. If I am in the middle of a really bad time, there are just too many items to carry over into the next day. So I have learned--finally--to prune out my list and only worry about the biggies. (Brush your teeth. Remove one of your prepared meals from the freezer for supper tonight. Call in sick. Warm up heat packs. Go back to bed.) Simple.
All kidding aside, a note bright pink post-it by the back door saying "PURSE" can remind you to bring it. Another post-it on the inside of your car door saying "KEYS" could keep you from locking yourself out. A full length mirror that you have to pass on your way out of the house can prevent you from going out with your pajama bottoms under your dress.
You get the picture. We need a lot of prompts. Furnish them. Use them. And stop worrying.
It seems that we've all been having bad times. Thank goodness we have this board to come to and get a little sympathy, a lot of love, and even more tips for better living--whether through chemistry (those of us remember the Dupont ads "better living through chemistry"), or heating pads, or pacing, or just watching something funny on the TV.
DS started a slightly different schedule. He was starting at 8:30 and now works from 10:30 till 7 A.M. I hope this is good for him. It should make the snow removal at the college more continuous. He'll be stopping just as the day crew comes in. The old way had a 2 hour gap with no groundskeepers. In bad weather, a lot of snow and ice can build up in 2 hrs.--especially at night.
I've been getting the voice mail at our younger son's group home for the past week. Tonight we actually got to talk. He's doing well, and has a full social calendar with something to do every evening after supper. (They all take turns cooking with the staff's help. If the menu calls for something you don't want to eat next Wednesday, you have the option of buying your own groceries and cooking your own meal--usually in the microwave.)
There was a segment on 60 Minutes tonight with the parents of mentally ill children. They talked about how their kids are released from the E.R. simply because insurance won't pay for more than so many hours there AND there are no beds available on any psych wards. So the kids are sent back home. Sometimes the wait to see a psychiatrist is as long as 3 months. In the meantime, the kid is untreated, the family is completely on their own, and the situation can only get worse. What we need is to accept that mental illness is really a physical problem in the brain. A child with diabetes or cancer is treated until he is medically ready to return home. So should a child with mental illness--a problem with brain chemistry is no different from a problem with pancreas chemistry. They are both life-threatening medical conditions that warrant hospital care until the patient's illness is under control, and it is safe to discharge him.
I think that those who have mental illness are a lot like us. They don't look sick. There are no blood tests to prove they are sick. They are misjudged by the outside world. They are called malingerers if they do not hold down a full time job. They often suffer in silence, thinking that there is no real help available.