Looking For The Positives

[shalady]

I know how being a caregiver can be very demanding and difficult. I would do it all over again if could. The suggestion of hospice is a good one. They helped us. They offer many services. I truly hope you are ok and also that Jerry has a better night. You are in my prayers.

Shalady

[LadyCarrie]

Dear Anne and Shalady,

I know without one doubt that God has given you, and others on this caring, compassionate forum, to me (to us). Truly, God answered my prayers, and gave me you. You have already made my life easier by just being here with me. I ask no more than what I have. Jerry and I agree that if we could only stay as we are, we would ask for no more.

Amberly usually makes our appointments, because she knows the best time for her. As nurse supervisor of a fast-paced clinic, she has to be there most of the time, especially if a provider is working still. She tells us to not fret, that if she knows ahead of time, she can put in for time off.

Like many others, I'm just learning that hospice is more than I knew, yet I know little about it still. I do know that one of Amberly's nursing instructors is now a hospice nurse. Amberly learned this one night when she was still working as charge nurse on the rehab unit, and her instructor came to see a patient as hospice nurse. Of course, there were a lot of happy hugs. I'm glad to know hospice might be an option, but I don't want to ask for this help unless we are in trouble. I don't want to take advantage, or take a hospice worker away from someone who has a greater need.

I believe tonight will be better than last night, Shalady. Jerry has been pain free all day. Because the OxyContin is addictive, he doesn't take it until he just can't tolerate the pain any longer. He was in pain all day yesterday, but he still worked on Quick Books in our office (home office). I think he waited too long to take the medicine, and the pain level got out of control. He shook (shuddered) throughout the night. I held him tightly, and downward toward the bed, in an effort to keep the shaking from being so hard. He couldn't control it.

Until Jerry went to the hospital, after we got our dump trailer filled with pine needles, he would haul the needles away to the slash place (where they use it, and sell it back to us as electricity). Since that time, we've hired someone to haul the needles away. We live in a forest of huge pine trees, so there are a lot of needles. It doesn't take long for them to become inches deep (if you start to slide on a slope, it's best to "ski" to the bottom). Now, I think we must hire the raking done on the lot, and the terraced areas. Part of my balking is my arm wrestling old age.

I have had a scare. I must not break myself and wind up in rehab, because Jerry depends on me. My days of working in my gardens appear to be coming to an end due to arthritis (!!!!!). The things you said a few days ago about your own back pain, Anne, is understood. I've been taking out roses, mahonia (Oregon Grape; Kay might know this plant, even though she doesn't garden ), and several other plants since Jerry got sick. I'm really hoping to keep the gardens on the lot that the house is on. Jerry loves the roses, and Amberly says that she will feed them twice a year (requires bending). I've promised him that for as long as I can, I'll see that the roses on this lot will stay. Ecclesiastes comes to mind--a time for everything.

Thank you both for your kind thoughts and prayers. God bless you both really well.

Warm hugs to both,

Carrie

[feralfae]

Dear Carrie,

I am so glad you are exploring hospice, yard help, and other ways to have less to worry about. Would it help to have someone come in one day a week to clean and do the laundry? Just having someone to help with cleaning, to give you and Jerry a respite to simply sit and be present with each other might be nice if you find you are getting busier. How wonderful that you have Amberly nearby. I know you are taking good care of you and Jerry, and relieved to know that hospice may be with you soon.

Although the pain medications are often addictive, they also help to relieve the body of the additional stress of flinching and being tense against the pain, letting more healing go on. There is good information on how to do responsible pain management, ever with potentially addictive drugs. It might be time to talk with the hospice people about Jerry's pain medication and how to manage his pain so that he does not end up trembling. I know that must have been hard for both of you. Bless your heart, Carrie.

I am so glad you are going to have help to clear away those pine needles! They can be so terribly slippery! (Your grace shows through your words, Carrie.)

Thinking of you and Jerry, and sending prayers and peaceful energy your way.

*<twinkles>*

fae

[shalady]

Carrie, I'm glad Jerry was feeling better. I know that feeling of relief when they feel better. I remember how focused I would be on Bob trying to make him as comfortable as possible, making sure he had his meds and shots on time, his favorite foods and was getting enough fluids. One other wonder of hospice are the people. They are unbelievable. Not only great at their job but very caring. Bob looked so forward to seeing them. It became a friendship with them. You'll be surprised what a difference it makes for both of you, you get a little much needed time for you. I know nothing replaces the need to take care of our loved one ourselves, but it is ok to ask for help. I will repay them by volunteering in some way. I have spoken to them and they asked I wait, I am still grieving and cry each day. I need to be more grounded and not so weepy, and I can certainly understand what they mean. I am glad you will keep the roses, something special you and Jerry can share. Sending you hugs. You are in my prayers.

Shalady

[MartyT]

Carrie, my dear, with all my bone and joint problems (along with aging!) I certainly can relate to your having difficulty keeping up with your love of gardening. I've had to switch to gardening in pots and window boxes, as doing so enables me to do my gardening while standing up. (It also fulfills my need to be able to dig in the dirt!) You might consider that as an alternative, at least at some point.

As for hospice, it sounds to me as if your Jerry would benefit more from a palliative care referral. He may not yet be eligible for hospice care, but he certainly does fit the criteria for palliative care. I encourage you to ask your daughter and your primary care physician about it. If you're not familiar with palliative care, here are some articles you may find helpful:

What You Should Know About Palliative Care

A Caregiver's Guide to Palliative Care

The Human Touch of Palliative Care

Palliative Care: It's About Easing Suffering

[enna]

When I first reached out for help for Jim I called our Hospice of the Valley. They sent a social worker out to do a preliminary assessment and said that Jim may not be ready for hospice but that they do offer palliative care and then when he is ready we are already in the system to begin with hospice. Well, that was on a Friday and on Monday he was in the loving hands of our Hospice Team. His primary care doctor signed whatever papers hospice needed and that was that. I am still so thankful I reached out.

So many excellent links, Marty. Thank you for them.

Anne

[kayc]

Carrie,

Yes, everyone in Oregon knows the Oregon Grape...still wondering why they chose that to represent our state though, because we have many more plants that are more common here. We have lots and lots of Douglas Fir and get the needles from that, and it can really pile up! Now that the county is cash-strapped, they aren't keeping up with clearing the roads and I've noticed it deeper on our road than we've ever had it before! Just yesterday I had to rake it away from the top of my driveway, where it entered from the road. It can be slippery when it's moisture laden and this week it's rain, rain, rain, so I didn't want it in walking areas. I can imagine having it deep on hillsides!

Thank you for explaining further to us about your situation, I understand better now, your reluctance to go to the doctor needlessly...l'm just not so sure this would fall into the needless category! You are fortunate to have such a caring and attentive daughter nearby. I don't have kids nearby and wish I did! It sounds like you're both having a time of it!

I hope you can find some help with your care...don't worry about taking away resources better needed elsewhere...you two are as valuable and important as any anywhere! I hope palliative care will be something you can use and it will be of help to you.

I don't suppose there's a Ridesource nearby? We have it here but only for the very lowest income. Hence, I must drive my sister when she needs it as her husband has a business to operate.

[LadyCarrie]

Dear Kay,

I was playing with you about the mahonia. I really like it, and ours is beginning to bloom too soon. I planted it all over the place here, because it gives us pretty yellow flowers, feeds the birds, and gives the birds shelter for their babies. The robins and western grosbeaks (orange and black, rather than red and black as they are in the Midwest, and I think, on the East Coast) share the mahonia beds. Mahonia also makes a good ground cover to keep our hills from becoming our neighbor's.

I am familiar with your Douglas Fir. We've made many trips through Oregon while Jerry and I were still traveling in our business. I've seen these trees in your beautiful state, and I have one small room that has a "Doug fir" floor. We like the wood.

Our county isn't keeping up with isn't keeping up with the care of our roads well either. We joke about CalTrans filling the potholes after they lose one of their workers in a hole. Perhaps they just can't do any better. No one asked me to manage their money (smile). I'm good at managing money actually. I've been told that I can squeeze a penny until Lincoln squeals (I'm Scottish and Scots-Irish, so I'm licensed to do that; I've also needed to do so).

Yes, we are indeed blessed to have Amberly nearby. Were it not for her, we would be moving right away, for there is no way we could live on this hill without her. We count her at the top of our many blessings. I'm sorry your children don't live near you, especially now that you are soon to become a grandmother. I'm sure your sister is very appreciative for your help.

Sometimes I'm tempted to drive regardless of my having Meniere's. It's usually not long in the day before something happens that reminds me that to do so is dangerous, not only for me, but for others. I will do it if I must (life-threatening situation), but it would be like someone driving intoxicated. Perhaps one way to explain what Meniere's feels like to me is to say that it's similar to walking in a small boat while it's moving on water. I've adjusted to it to a great degree here on our property, but I'm sometimes uncomfortable in unfamiliar places. I must look up, or around, slowly (not good for driving, huh?), or risk starting to topple. This is not always so. I just never know when it will happen. I sleep with a light on in order to tell which way is up, should I have an episode during the night. By the grace of God, I did well at the hospital. My doctor says that I did well due to my natural cortisol kicking in. God gave me my natural cortisol, so He gets the credit anyway.

As for an agency that provides rides, there are two (I think two), but we don't qualify. Amberly said that she has been trying very hard to get rides for two patients who do qualify (MediCal), but their doctors must agree, and do their parts. Doctors typically hate to do paperwork (imagine that). Amberly is an animated, tenacious advocate for the clinic's patients. She fights their battles for them to get prior auths for medications, surgeries at the universities, etc. She seems to take each one on as a personal challenge to get the patient what he or she needs. Many medications are now being changed or denied, and many surgeries are delayed or denied. She's worked in the medical field a lot of years, and has never seen it this way. It's frustrating for her. The new insurance rules are difficult to work with for everyone. I showed her your post regarding rides, and she said, "You don't qualify." Well, then, I'll take that as a positive, because at least now I know. Education is good. I got wound up on something I hear from Amberly almost daily. I hope I've said nothing offensive.

I will write regarding Hospice and Palliative care tomorrow. I'm going through a bit of another adjustment. Please understand, and bear with me. Because you, and so many others here, have gone through similar things, and are managing, I have hope. I thank you all for this hope. I've found such relief after finding all of you on this forum. It's just so difficult to think of Jerry and these wonderful, helpful, and much-needed agencies connected. I'll be fine again by tomorrow. I can do this. I must, and so I will.

Blessings and hugs,

Carrie

[kayc]

Last year I qualified for Medicaid and Ridesource but this year I do not and my income has not changed! The only difference is last year I signed up through Covered in Oregon and this year it's gone and I signed up at the Federal website. Oregon was more liberal with Medicaid but now that it's going through the federal exchange, it is all based on federal guidelines. So this year I'm paying...the one concern I have is that I don't know how I'm going to come up with money to pay taxes on the supplement the government gives me, when I was on Medicaid it wasn't reportable as income, but the federal supplement for insurance is. It can add up to quite a lot and when you don't have it, you don't have it. I'm already pretty barebones in my budget.

I don't know how you live with Menieres, it sounds horrible!

Well, I'd better get going, I work at the church today. Take care!

[feralfae]

Dear Carrie,

Your fortitude and determination, inspired by your love and faith, shine through your writing.

I lost my husband Doug three years ago on the 7th of February, so I am in the midst of honoring his memory and my grief during this time. Doug was diagnosed with advanced colon cancer in 2008, and although he was given only a few months, he held on, went through three rounds of chemo, many surgeries and several clinical trials, and managed to keep going until three years ago, so we had a lot of time together to prepare, say goodbye, share our love, and make sure that we were most secure in each other's hearts, even if Doug had to leave this Earth. I miss him every day, every hour, and long to hear his voice or see his sparking eyes one more time.

Our last year was a time of surgeries, chemo, clinical trials, and an unremitting series of medical procedures. But the saving grace during that last year was the kindness of our local hospice group, as well as loving friends who helped out. By that time, I was almost entirely debilitated, and had truly worn myself to a few threads barely hanging on. My big wish is that I had called in hospice and private nursing assistance sooner. I tried to do it all pretty much on my own for way too long, and healing myself from the stress and lace of self care has been and still is an issue. As it was, Doug's last week was spent here at home, with hospice on call, as Doug and I talked and snuggled and held hands, gently sharing those things we wanted to make sure we said enough, mostly "I love you." We simply spent the time speaking to each other's hearts.

So, take all the help you can get any time you can get it. Set yourself free of as much as you can so that you can spend more time with Jerry. If you do not have a social worker to help you figure out what resources are available, maybe it is time to get one through Hospice or the hospital.

I think G*d must have led you here among us. I imagine you have found all the wonderful resources Marty and Mary offer through their sites. And we are all angels to each other, helping each other, giving each other words we need to hear to help us on this journey, and comforting each other through the painful days.

Peace to your heart, and Blessings to you on this journey.

*<twinkles>*

fae

[LadyCarrie]

Dear Marty,

I’ve read what you’ve written regarding your bone and joint problems. I’m so sorry these things happened to you. You’ve been through much more than I. You surely do understand joint pain. I’m happy to learn we both like to play in the dirt still (smile). I’ve decided to cover some areas with California poppies, Chinese Forget-me-Not, and alyssum, because they’re pretty, re-seed themselves (bird and bee food), and are easy to care for. I’ve always had these, but I’ve planted them “all over” now. God is good. He gives us beautiful flowers that require little bending. Did you know Chinese Forget-me-Nots are edible?

You are right about container gardening. I’ve used pots (also kitchen pans into which I've drilled holes into the bottom), but I’ve never had a window box. I'll bet yours are lovely. I’ve found container gardening fun for a few decades, even before I needed to pare down (I like “pare” better than “slow”). We knew this time of our lives would come “someday,” so we planned for it somewhat. Jerry built some raised beds for me, and would have built more had I not said that he’d built enough (I wish I hadn’t done that).

Many years ago, I bought 30-40 silver, galvanized steel buckets, and painted them a light creamed-coffee brown. Jerry built shelves around the front deck for them, and added an automated watering and draining system (drains to another garden down below). We still use these buckets. We like velvety, deep-purple petunias, with white ones added for contrast, in them. We also like portulacca in them, especially when just the right petunias aren’t available. I also use half-wine barrels (love these!), but I learned the hard way to not put them on a redwood deck, even though they were set on stone blocks. We had to replace both the front and back decks, because I rotted the joists! Those were the most expensive flowers we ever had.

I thank you, Marty, and each of you who has been so caring as to suggest hospice or palliative care to me for Jerry. I've talked with Amberly and Jerry about these organizations. Amberly says that Jerry doesn't qualify for hospice, and she isn't sure about palliative care. We will talk with our primary physician. I believe we will be seeing him within a month. Although this is difficult to adjust to, as it is for others, we will accept whatever help is available to us, and with grateful hearts. Thus far, I've been able to do all that is necessary for us, except drive (danged Meniere's!). Because we had such a positive experience with visiting nurses, and a visiting doctor, during our required two-month stay in the motel in Modesto after Jerry was discharged from the hospital, I planned to have them come here, if we need help again. Amberly says that hospice is very small in our rural area.

Jerry has such a wonderful attitude. When we talked about hospice and palliative care, he smiled at me, and told me that he's going to live at least another ten or fifteen years, and he just might. No one expected him to make it this long. I could die before he does. I know he's trying to comfort me. My mother used to say that Jerry can fix anything. Amberly says that he can fix anything from broken dolls to broken hearts (without him, who would fix mine?). He is our "go to" person in our family. He always knows what to do about everything.

There are others to whom I wanted to write today, but could not. We learned today that a friend died. He was the manager of a local bank.

Blessings and hugs,

Carrie

[feralfae]

Dear Carrie,

I so enjoy your discussions of your flowers and yard. My gardens limped through several years of neglect, and I am only just now starting to put them back together, replacing dead Yucca, Russian Sage, Yarrow, and other dry upland flowering plants, although the Indian Blanket and Calgary Carpet seem to be holding on. Some of my bulbs are still around, I think some lilies and tulips, and I guess I will see in a couple of months. I have poppies and alyssum near the pond, and poppies down in the draw, too. It is all rough now, having had no attention for some time. But I know things will come back, and I am looking forward to spring to see what comes up once the ground thaws.

Your place sounds so very beautiful.

fae

[kayc]

Carrie,

I'd love to see a picture of your flowers when they're in bloom. I'm sorry to hear a friend of yours died, it seems we go through that more and more the older we get. I have hanging flower pots the length of my patio deck (30 1/2 feet long) and I enjoy them. I used to tend them when on the phone with my mom (she'd be on an hour) but now she's gone...

George and I loved the flowers, begonias and pansies are my favorites.

[LadyCarrie]

Dear Kay,

You are strong and persevering like the lovely pansy. People often misjudge the pansy, because it looks so fragile and delicate. Because we've planted pansies in our buckets, we've learned that although harsh weather comes and smacks the little pansies' faces into the snow, they pull their faces out, and stand tall again. The down time is temporary; like you, they come up smiling, and fighting back.

Blessings,

Carrie

[LadyCarrie]

Dear Fae,

Thank you very much for writing to me. I welcome you to my life as a new friend, and I look forward to getting to know you better. I have been getting to know you by reading your posts. I sense you are a kind, caring, deep, sensitive soul who possesses an inner strength that enables you to meet your challenges with strength and dignity and win. I find you both delicate and strong. I find much to admire in you; not only for your accomplishments, but for who you are as a person.

I have been reading your earliests posts for a couple of days. Although our backgrounds are quite different, there are close commonalities between us. As we are all the same at the feet of holy God, we all are one in grief and healing. Thank you for making me feel welcome here to your fire and to your Tribe.

Your flowers sound lovely also. I'm unfamiliar with Indian Blanket and Calgary Carpet, but I do have both red and yellow yarrow. My sage is Mexican, rather than Russian. I often wish the yarrow did more for the birds and bees. I'm unaware of anything they do, except to please the eye.

Thank you for telling me that our place sounds beautiful. I'm telling myself that it will be beautiful even if it must go back to its natural state and place in the forest. That is the way we found it, and loved it it as it was. I'm also telling myself that I'm being greedy to want it to be as we've made it to be. We turned one lot into what we call our "Jerry Hall Park," because he always wanted to make it look like a park (Amberly named it; he would never have been so prideful). I just feel a loss as I lose each of my much-loved plants. I will adjust. There are much bigger adjustments for me to make.

Blessings,

Carrie

[enna]

On this beautiful day in sunny Arizona, I have finally had a breakthrough with my physical therapy. It is working on my back pain and I will put off having a cortisone injection since the hip pain is dissipating also. I pray that this is a turn around for me to be able to focus on something else besides my health!

I so wish I could send the warmth of the sun to all those who are in the deep freeze right now. Please stay safe.

Anne

[MartyT]

That is the best news I've had all day, dear Anne, and I so hope your back pain continues to diminish. Yay!

[LadyCarrie]

Dear Anne,

I was just sitting here wondering how you are. I'm delighted that your physical therapy is helping you. I'm glad you didn't need to take the cortisone injection. There are more pleasant things than getting cortisone shots, but they do tend to make you feel as though you have a new body part for a while. My brother-in-law wrote to me this morning from SC that he had a cortisone shot in his knee, and feels like he has a new knee today. I'm glad to hear your hip pain is dissipating.

You always focus on so many positive things, and then share them with the rest of us. Thank you.

Like you, I wish I could send some of our warmth to those who are in such cold areas of our country. I'm in the office with the windows open while looking at flowering plum trees that are turning pink way too soon. I just heard from Jerry's cousin in Ohio. She was expecting a temperature of 7 degrees. Ouch! She is concerned about being able to get to her dialysis treatment, which she needs three times a week.

Blessings,

Carrie

[Queeniemary]

Anne, that is the best positive news I have heard!!! So glad the PT is working. Not too bad on the weather here today. Right now it is around 50, and sunny, but they say a slight chance of snow (flurries) tonight. My positive...no chips since a week ago this past Monday, and I am down 4.9 pounds. Doing my curves every day. Granddaughter MaCayla came home sick from school, her Mom is flying to Memphis this afternoon to work at the airport there for two days. MaCayla and I are just going to settle in and watch Netflix. Poking flu medicine down her! Going to make her tomato soup and toasted cheese when she is hungry.

Carrie, sounds like you have quite the green thumb....mine is definitely brown. I love flowers though. My Mike was the gardener in this family.

Wishing sunny days to all.

QMary

[kayc]

QMary,

4.9 lbs since Monday? Wow! I think I've only lost a couple pounds since my surgery, even though I've been on plan religiously. It does that though, hits a plateau, hopefully it'll break soon.

[kayc]

I got my taxes done today, took almost five hours because Taxbrain merged with Liberty so everything is different this year and I had to "chat" about a couple of things and they were super slow. Glad to have it done! I get a whopping $16 back, maybe in time for Arlie's birthday.

[Queeniemary]

Kay, I said the Monday wrong, it was the Monday before the just past Monday, Jan. 26th. Wish I was losing that fast!! However, slower is supposed to be better. I am really trying to make healthier choices, even more than just trying to lose weight. Slow and steady wins the race is what I hear.... You have done real well, and your plateau will break soon I am sure.

QMary

[Wifflesnook]

Dear Anne, that is good news. How much time does your therapy take? And what do you have to do? I'm so very very glad that you are seek g results. X

[HAP]

Dear friends,

Despite the negatives of the last two weeks reported elsewhere, there has been some positive energy out there as well.

Last weekend, I finally tackled the faucet on the kitchen sink. It went much more smoothly than the one in the bathroom did. I have to replace the faucets every ten years or so because the acidity of the local water supply corrodes their inner workings so badly. Lifetime does not mean lifetime here when it comes to plumbing.

I went to the funeral of Jane's Uncle yesterday. He was 98 and, as one of his sons said, 95 of them were great--and only the last few months could not be described as at least good. Jane's dad seems to have stabilized, though they've had to increase his pain meds a bit this week. I'd like him to see 90--that would be in mid-June--but only if he has something that looks like a decent quality of life. Uncle John was his best friend in many respects and he couldn't go to the funeral. So the funeral procession went to him on the way to the cemetery. He stood in the window and watched it drive by.

Gail had a tough time with the funeral. Every time she looked at the coffin she saw her father's near-term future. But there was a bit of a breakthrough yesterday--she was able to talk about that prospect in real terms for the first time. Hank served in the Marines on Guadalcanal, and everywhere else in the South Pacific during WWII. She said she wants him to have a military funeral when the time comes. I'll have to figure out how to get the Marines to send an honor guard.

Jane's cousin is a funeral director. He does all the family funerals. We usually sit together afterward. He is going to help us set up a golf tournament for the Marathon Walk team in Jane's memory.

My follow-up with the dental surgeon went well. I still need to avoid even alcohol containing mouthwashes for a bit longer, but I can safely eat solid food again. The next phase is in early June.

I started the Marathon Walk push yesterday on social media. That will mean several posts a week on NETs in a variety of venues. I need to get moving on the Relay for Life stuff shortly as well. I just have to keep moving forward.

I lost about eight pounds in January. That leaves me with about 20 to go between now and June. It's a start.

Kay, any time you don't have to pay in more is a plus. Anne, I keep rehabbing my knee. I'm glad to hear your PT is going well. I wish mine were going better than it is, but it all takes time. Mary--you'd tell me to be patient, so I'll return the favor. Marty, I didn't realize your joints were in that tough shape. What are you doing for them?

I have to get out and do some things before the snow flies this weekend. The good news is they are saying we may get a bit less than first predicted. That would be nice.

Peace,

Harry

[kayc]

Harry, I hope you don't get much snow...we are getting tons of rain and wind, knocking our electricity. So glad to have it back...hope it lasts. The worst storm yet is approaching this weekend. I filled 8 gal. jugs with fresh water this morning, I keep it on hand "in case".

I'm glad your progress with the dental work is going well. I have been trying to lose weight and being very strict with myself but didn't lose anywhere near 8 lbs. in January! My weight seems to fluctuate so much it's hard to tell what it is for sure, but it seems I've lost 25 lbs since I've started, 20 of it prior to surgery...I actually gained weight during surgery (their sugar water drip?) who knows, it shot up and then slowly down, but I can't seem to break this plateau. Will keep at it though, I have no choice!

I agree, any time we don't owe taxes is good!

I'm sorry for the loss of Jane's uncle. I had to look at it that way with my mom too, she lived to 92 and was able to live in her own house until 90, not too bad!