Ethyl17

Ruth: been a long time for sure. I haven't been onsite for a long while - going through some issues here. But I was so glad to see you had posted. I was basically checking in to see how all our Texans were doing. I am sorry about William's decline and I do hope it is temporary. You do so much for him. Good to hear you are still getting off to your yoga and swimming. I know this is so important to you. And the little puppies are doing well. Please know I think of you and William often. You were so helpful to me in those early years. Be well, stay strong. And know that you are in my thoughts. Debbie

Your husband may qualify for yearly PT-OT, if you are on Medicare or through his insurance. I take Bruce to Outpatient every year for what I call his "tune up." The first few years, I sat in on every session. Now I sit and read, use their pool or just walk the grounds. I had caregivers in to help - we private paid as we did not qualify for paid assistance, but Bruce did better with me and I had gotten to the point where I could not work and take care of him, so I retired and therefore had to stop paid caregivers. I will treat myself from time to time with a dinner with friends or a movie. I ask friends to stay with him and every once in a while, I will pay for someone to stay with him. What I do want to share with you is that the routine that you and your husband are in now will not continue. Changes will occur and readjustment is needed. This is difficult for us caregivers. We have to totally rethink what we are doing and what is required to function daily. Fitting in time for ourselves changes as their needs change. I did look into "Respite" care for Bruce. I am trying to get away for an overnight with my sister. But the SNFs that will do Respite care, at least here, require a 4 day stay. Yes, Medicare will pay for it. As much as I would love 3 or 4 days off, I can't do that to Bruce and I would just dwell on that and not enjoy my time. But it may work for you and you have to check into your insurance and see what they allow. Also, if your husband now requires more help from you, his PCP can order PT-OT at home, due to "change in condition." For me, the biggest thing was getting enough sleep. In the early days, HostSue advised when Bruce slept, I had to sleep - regardless of what else had to get done and over the years, I have kept to it. Bruce no longer naps, but I make sure I get a good 6 hours overnight and then I can function. This is such a difficult time for you and your husband. A transition, for sure and so difficult to work through it. Go easy. Debbie

Ruth: so glad you are enjoying your retirement. But still busy as ever. Good holidays. Debbie

Nancy: thank you for the update. You know you are always in my thoughts and prayers. Good to know you are on the road to recovery. Debbie

Sarah: praying for you and the family. Debbie

You know you are in my thoughts and prayers. Beautiful tribute to your son. Take care. Debbie

Ruth: it might be time for a break. But defintely, it is OK for you to forgo what we call the "hooplah" here in SparksPalmer land and have your workout, enjoy your time. Get back on the horse after a short break. Be well. Debbie

Sarah - I am so sorry for your loss. Please know you and your entire family are in my thoughts and prayers. Debbie

Thanks Sarah for the update. I do hope you find a nice cool place to chill for a few days. Weather throughout most of the country is just horrid. Will be keeping a look out for your nephew. Let us know when he comes up - lots of MLB fans here. We can all cheer him on.

Thank you for updating, Julie. Happy Birthday to Larry and Congratulations on your Anniversary. Your weather is horrid, for sure. Keep the AC going and hydrate. Go Cards!

That Bob is looking sharp! Great finds Sandy! I know they are comfortable but he looks so good.

Congratulations Ruth! Been a haul for you, certainly. It is going to take a while to adjust to your new routine and season changes will bring about more. So glad you are able to spend time with new projects and fit in the therapies and routines that you like. William too will need time to adjust to your being home. Enjoy! And update when you can. Debbie

Congratulations Sarah and Gary. Beautiful blog Sarah. How many of us you have guided through this stroke journey with such grace. Debbie

Sarah - exactly what Bruce wants. A celebration of his life!

Been meaning to blog for a while now, just finding the time, as we all understand. But as Bruce enters his eighth year of stroke, an interesting change in his recovery. His cognitive status is so much improved. I waited months before I mentioned it to our Doctors because I thought I was misreading or seeing improvement where there was none. Then my sister mentioned it, so I knew Bruce was continuing to improve. My Psychologist did another Psych-Neuro and sure enough! He is reading novels. You all know how difficult it was for him in the early years. He couldn't remember what he read the day/hours before. But he had two newspapers a day, all kinds of magazines and so many of our dear caregivers here sending anything they thought he might enjoy. This is one advantage to all of us being scattered all over the globe. His short term memory is greatly improved. There are still times when he had trouble of course, but mostly I can read a short article, hours after Bruce does and then we can chat about it. That has been true for about a year now. Spring has been slow in coming to the Northeast. We had a frost warning just Tuesday night but here in CT we aren't supposed to plant much before Memorial Day anyway. Still enjoying this week where we finally did not need sweatshirts to go outside. Bruce will be starting his 2016 PT by end of Summer. I am hoping they toss him in the pool from the first day. It is on my list, certainly. It is hard getting him to move and after a long winter, he is certainly tight. I just continue to make him move himself in the WC which is better than nothing. Back in January, I was going through his office, trying to find something he hadn't read in a while - picture books mostly and I brought up The Road by Cormack McCarthy (one of Bruce's favorites). Next thing I know, he is reading it. So I continued to bring up his favorite authors and he continued to read them. But he had read all of these before and a lot of the classics he also taught - still he kept with it. So I brought up one he purchased right before he stroked: Oldest Living Confederate Widow Tells All by Allan Gurganus. Bruce may have started it, but I know he did not finish it. 718 pages. It took him three weeks to get through it. I also figured out that there were a lot of books on his shelves that he has not read - LOL. Book sales of course. So I bring up a couple every few days and he picks something he would like to try. He is more chatty. Starts conversations, asks questions, engages in discussion. Mostly it was listening before this past year. He understood everything but because it was so difficult finding his thoughts and then the words, he would hang back or just give a simple response - one or two words. His lady friends came for dinner a couple of weeks ago. They hadn't been over the winter and they were both amazed. I did want to share because even this long into stroke, it is so promising, hopeful, that recovery continues.

Ruth - good to hear from you and thank you for the update. I sure don't envy you the colonoscopy, certainly. Do let us know about the job. My best to William and the little puppies. Debbie

Happy Anniversary to both of you. Sarah, thank you for the picture. You were both so cute!! Love the golf cart idea. Celebrations all around!! Debbie

I remember finding this group when we were nine-months post stroke and the advice at the time was to calm down - the first year is the hardest. With a lot of hard work, endless conversations with both caregivers and our stroke victims, I made it through year one. Then came the realization that this was a very long haul. I had seen the improvements - still do at year seven - but also the slow, tedious progress. And there will be road blocks ahead. Stroke always reminds us it does not rest. Celebrate and take joy in survival and recovery through year one. A huge accomplishment for your whole family. A thought for year two? work on your marriage. All those things you enjoyed together-laughing, enjoying nature, reading, puzzles you do together, play cards. Have him with you when you prepare meals if that was something you used to do together. A small period of time, every day, where you are just friends and partners again. Debbie

Stroke speak! Always a fun and challenging time. Debbie

Ruth: I go to the message board and on the right is Chat Rooms. In blue ink is Chat Schedule, click on that and then when you get to the calendar, up about just click on Chat Rooms. There is a new window if you use Java - just check run or yes (I forget which one). So good to hear from you and thank you for the update on William, you and the little puppies - LOL. This is a hard decision for you, about work. I know you love what you do and enjoy having something for yourself. This is a turning point year for Bruce and I, as well. I may have to go back to work part time - LOL. You will weigh the options and I know, make the right decision for you and William. Do keep up updated. Always good to hear from you. Debbie

Sarah - Bruce's roommate and his wife, in NM, are motoring to Phoenix today for a long weekend visiting with their daughter and son-in-law and his main concern was your heat. They are hoping that they can get out and about without too much concern to the weather. Hoping that is true for them. I was thinking of you and Gary and your caregiving issues. Was hoping things had gone a bit more smoothly for you than in the past, but seems you are right back in the thick of things. So glad you can still call on Kelly for a bit of help and of course, you son being able to step up a bit. Nice visit with Gary's brother and sister-in-law. A nice break for a change. Good news on the ND trip in August. Exciting that you will be meeting up with your family and final arrangements for Mom. Will be thinking of all of you. Thank you for updating and best to you and Gary. Stay strong and hoping you can get a new caregiver on board, soonest. Debbie

My thoughts and prayers to you and your family. Bless all of you and yes, this baby is special. A blessing for sure. Debbie

Well said Sandy. Best to you and Bob. Debbie

Today is Bruce's 7th anniversary following stroke. Funny, we both have been mentioning this on and off, over the last few weeks. Our niece and God-daughter's birthday is tomorrow and seems we have been focussing on that and how to celebrate with her, so many miles away. We had a rather mixed up day and neither one of us remembered today - LOL. Thank you Steve for reminding me because it has been a while and I did want to check in. We have been busy here. Winter was not bad this year - a couple of big storms, but so many warm ups. We were out most days. Of course, yesterday, first day of Spring, we get hit with a Nor'easter. But snow doesn't last this time of year - sun direction and warmer days. Bruce loves the winter - always did. So, in a way, it was a celebration of sorts, of his anniversary. Of course, he sat at the front door with a coffee, watching me shovel the ramp and sweep off the truck - LOL. We were slammed with some issues about 5 weeks back, after a nice stretch of quiet, fewer appointments, visits with family - just a perfect holiday season. So, we are still working through those issues. I am very stressed but have been working with a Psychologist since last fall and that has helped immensely. Bruce is doing great. Cognitively, he has never been better. He initiates more conversation, does more here around the house. When we tell new caregivers it is a long haul to recovery, that is so true. I have been amazed at the progress he continues to make. He is now reading novels again and has truly taken over the daily lists of chores that need to be done. He, too, has been meeting up with my Psychologist, as she wants to make sure Bruce is comfortable in all this and I think that has made a huge difference - he is trying to be as independent as he can be with an eye to safety. The funniest thing is he is rearranging the post-it wall - LOL. Now you all know that is my lifeline, so to see things moved around, makes me nervous. He even had Mary Beth get him some rainbow colored post-it, so the wall would look more "festive." Gotta love him. Personally I think he wants to be able to identify his post-its vs my post-its. Physically, he had the best PT sessions last fall. He was approved to go into the pool, with flotation devices, of course; by himself. But as so many of us mention, not much continues at home without bribing, whining, threatening, etc - LOL. But he can still surprise me when I walk into the kitchen and he is standing at the sink, looking out at the birds. We are hoping for a few overnight trips over the summer. Nothing big, but just getting away.Bruce will hopefully start 2016 PT in early fall, as we like to do. So thank all of you for thinking of us and wishing us well. As my Grandfather Palmer used to say "seven years gone." Debbie