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Mary Jo, how difficult this sounds. I'm so glad you've taken the step to get help for bedtime. It's a small amount of time but just to off-load that task will provide a bit of respite. I hope you get rest too. For me, when significant lack of sleep becomes an issue, everything else goes south.

Lauren had sepsis once too. Very serious stuff. He was one step away from a ventilator with that episode.

Keep us posted. I wish I could help somehow but I can only care. So sorry for all you are facing. ~~Donna

My goodness. What an ordeal for both of you. That switching the anti-seizure med so suddenly doesn't make sense to me either. Sure hope he settles down before you bring him home. ~~Donna

Sue, I'm sorry your holiday was rainy and gloomy in more ways than one. Still, there was a connection with family and that had its moments of joy. I do wish you had been able to have that sit-down talk with your daughter. Perhaps that will still be available to you and her in the near future. My guess is you both would benefit from it. It sounds like she is working on overload and must be exhausted.

Time for Sue. Others might need to know you are needing a bit extra right now. Any friends you could call on to bring some chicken soup and a bit of love? I know--you'd rather not have to ask. But often others are waiting in the wings, willing to help but not knowing how or when. If that's not possible, well, you gotta go for it yourself. What would a "nurture Sue day" look like? Put something into tomorrow that's completely indulgent. Some days it really can be all about you. ~~Donna

Congratulations on moving forward in getting the house sold. It sounds like it will be a big relief when that part is completed. I wish you the best in getting it sold, as is.

It's always a bit hard for me to know what to say about stroke anniversaries. They are definite markers that need to be acknowledged. Also, we all know that making it to that anniversary means we have been on a long and often challenging journey. So I celebrate the effort and success of both of you and wish for continued recovery.

~~Donna

Lauren had a mask at first and didn't do well with that. Then he switched to a nasal cannula that goes into both nostrils and he is tolerating it better. He still doesn't like it and occasionally pulls it off but mostly he leaves it alone. This is not negotiable with me because his sleep apnea is severe and life-threatening so it is as important as any other thing we do.

I'm glad it's working out to do these tests in the hospital. I think you will find it much easier to do and I would guess that the technicians are a bit better trained for more complex medical situations like stroke.

Good to hear the update! ~~Donna

Before stroke, I was always the "go-to" babysitter for my two oldest grandkids (now almost 6 and 8). The youngest two are twins who are almost 3 and live about 2 hrs away. I spent a lot of time with my youngest daughter when the twins were born and expected to make frequent trips there to help out. Then stroke took that all away from me. It has been one of the most heartbreaking aspects of this stroke journey beyond the heartbreak of seeing my generous, active husband so severely impacted by his deficits. Thankfully, the twin family come and stay with us often so I do get to see them but the older two don't have the easy relationship with us they used to have. I still see them often but it isn't quite the same. Still, we make time to get together as family as often as we can and that keeps the relationships alive.

I'm so pleased you were able to pull off that week with Weston. It is a lot to take on and, yet, it is so special and I can tell it has brought you joy. You are doing an amazing job keeping up with all you do and maintaining family and social connections as well. ~~Donna

It sounds like you have a worthy guide for the journey. I am so confident you can do this. You have everything you need to stand at the crossroads and explore every possibility. And you will find JOY at the end (well, at the beginning and middle too!), except this time the word will have all its letters. Nothing left out. You can do it. You can do it. You can do it!! ~~Donna

Thanks for the update, Nancy. You have been on my mind. Isolation from medical services sure limits your options, doesn't it? It is kind of mind boggling to me that there is no nursing home at all in your area. I'm glad he's taking his meds again but I sure do agree with the surgical consult. Need to leave yourself with a way to get around the stubbornness. Day at a time for sure. ~~Donna

Sandy, my mom was in assisted living for a number of years. At that level of care there is a strict requirement that the residents can find their own way to safety in the event of a fire. I think that's the main reason for the walking requirement. But there was assistance. She took care of her own personal care but there was someone on duty 24 hours a day on her floor. They took care of all her meds and checked on her if there was reason to. Laundry was done and meals were taken in a dining room. She had a small kitchen for light meals but no stove or oven. They had transportation to grocery stores and other outings. Of course, there were activities of all sorts the residents could participate in if they wanted to. In my mom's case, if she began to require help with personal care or was unable to find her own way to safety, she would not qualify to live there any longer.

Henry, best wishes on meeting your goal!

We live in fear of falls, don't we? Or I do anyway. I'm so glad the x-ray was okay. I do recognize the terror that goes with not knowing what the future may be from "here". I'm sure he'll be sore for a while with a direct hit to the hip. Perhaps this experience will burn safety into his brain. I hope so. Well, you've had it checked out now so I hope you both sleep better tonight and you can celebrate Valentine's Day any darn day you choose! ~~Donna

You are definitely not an idiot. You are overstretched and overwhelmed by a completely unmanageable situation. Nancy, I just want to whisk you away right now. The only thing I have to suggest is to pick up that phone at the first moment of seizure and call 911. Get him into the hospital first of all and then regroup and develop a plan. There's no use to cry, beg, cajole, or manipulate. It won't do any good, as you've discovered now and before. My heart breaks for both of you.

Wise words as usual, Jamie. I've spent a fair amount of time teaching about the wisdom of accepting what is in front of us with curiosity and openness. Also, about self care. A big part of my life before Lauren's stroke consisted of that. It is not lost on me that I now have the opportunity to see if I really meant it. I do know it's a lot easier to talk about than it is to do when life is really tough. I love the quote by Maya Angelou. Helpful words that give us an extra push to see our way through. ~~Donna

Very helpful information. Thanks so much for sharing. I don't know why they have to make it so hard but it is nice to know that consistent effort can yield good results. ~~Donna

Nancy, you have been through so much over these last few weeks that I'm surprised you're not flat on your back. And yes, it does seem to go on and on. We have been to the ER so many times I've lost count. I am glad Dan doesn't have a clot. That's always so scary when the INR is low. I wonder if they will admit him to check out what's wrong. Take care of yourself the best you can and know we are all here pulling for you. All the best ~~Donna

Thinking of both of you and I will hold all those in the path of the storm in prayer this weekend. I think I'd be most worried about power loss as well. Other things you can prepare for--except for medical emergencies. Oh the fun of being the sole responsible party, eh? Stay safe everyone. ~~Donna

I am also an INFJ. From what I understand, there is a lower percentage of the general population who test as INFJ's. However, I seem to have a fair number of friends who have that result. We must instinctively band together! Interesting reading. Thanks!

~~Donna

Good for you! You did just what you needed to do for renewal. I took a trip like that last year with friends and then had some time alone. It made everything better for quite a while. Lauren also missed me quite a lot so he wasn't as likely to take me for granted once I came home. I hope your "glow" lasts for months, not just a few days. I know these trips are expensive with all the additional cost associated with providing care for our spouse but they are worth every penny in my book. Doesn't always have to be waterfront (although that's grand!)--just a time away to regroup and refresh.

~~Donna

When you finally find a therapist who HELPS it is wonderful! It sounds like she is looking for what works instead of just repeating a treatment plan she does with everyone. I hope you get more than those few sessions--we won't get me started on the limited therapy available to so many.

Your job must be a good fit for you. What a great way to start a day, thinking about working at something that has meaning and that you are good at. With your determination you will keep on doing good things for yourself and others.

~~Donna

I'm not sure I could make it to 50 but you have listed some of my favorites as well. Have you seen King's Speech? If not, you might enjoy it.

Yep. Sorry, Nancy, for all the losses. Builds up sometimes. Even though the move made good sense and has benefits for both of you, that doesn't make up for the love of the farm and the way you want to be available to your daughter. We reminisce as long as we need to, long for what cannot be, and then face into the new day with all the hope and joy we can muster.

Peace... ~~Donna

Sting, I'm with you on the dream of a doctor visit that doesn't require repeated follow-ups. We have 8 specialists we see (for Lauren only) so every month has several doctor visits in it. Crazy-making! That's wonderful that they can do the tests at home. I'm curious about the sleep apnea one, though. Is there someone there all night with him that monitors the test? For Lauren, they made adjustments through the night. Oh well, I think it will be much better in your situation with Ray to have it done at home.

It does sound like you have found a perfect way to spend a day on the second anniversary of Ray's stroke. A wonderful dinner with friends will be a joy! ~~Donna

I can relate. Coffee is one of the simple pleasures in my day. When coffeemaker goes out, Donna must find someone to watch Lauren TODAY so she can go get a replacement! So glad you have been saved by the UPS delivery. ~~Donna

In your situation I would have already blown a fuse big time. I don't have to deal with those type of behaviors so I can't give much in the way of suggestions. I just think that basic respect is required and when he doesn't give it to you, you have to call him on it.

I am curious about something you said. If you cut back on some of the "catering" how do you think it will set things back to the beginning? Just asking for clarification because whatever fears you harbor there might provide insight into the situation you are in with him now. Or, perhaps, it is just something for you to reflect on privately and not necessarily answer here.

People with the mental capacity of a toddler cannot be running households (although far too many actual toddlers do!). So I am right with you that some new guidelines need to be set. He can't be treated like a child because he is not a child even though the mental capacity issue is there. But toddlers having tantrums generally don't get attention in their tantrum and only get what they want when it is appropriate and when they learn to ask nicely (respectfully). They have to accept limitations. We all have to accept limitations. So you do what is necessary to keep him safe and try to withdraw attention when he is demanding. I like Sue's response. "One wife, one job, choose one..." So simple, so complete.

Deep breaths and best wishes...~~Donna

Love your stories! I'm a Nana too and those grands keep the joy flowing. We have twin grandkids (girl and boy) who are 2 1/2. The boy (Aiden) has taken to Lauren's quad cane and uses it as a microphone for his "performances." Totally love that. When he started stomping his right foot like a country singer I cracked up. I'll see if they decide to pick up "cane golf" at some point.

~~Donna

Lauren was diagnosed with dementia when he had an eval by a neuropsychiatrist. He wasn't able to do most of the testing so it was only minimally helpful but that word is in the conclusions. It didn't really tell me anything I didn't already know. I have downloaded the book to my Kindle. It might provide some helpful information.

Lauren also has severe sleep apnea. His is called complex central sleep apnea and is life-threatening because of the long pauses he has in his breathing. I think he had sleep apnea for quite some time prior to his stroke but it became much worse after. The sleep specialist we see for this condition came to a stroke support group we attend and he opened my eyes to how serious this condition can be. Sleep apnea is thought to be a cause of both heart attacks and strokes. Lauren had a heart attack 2 years before his stroke and the stroke was caused by a clot that formed in his heart. I just wonder if this condition contributed to the original heart attack. Lauren has a BiPap which provides a higher level of pressure that kicks in when he stops breathing and forces a breath. The doctor said it's almost like a ventilator but outside the body. We started with a mask that covered his nose and mouth. He kept pulling that thing off in the night causing me no sleep most of the night. We moved to a nasal piece that just goes inside his nostrils and is a soft pillow. He has tolerated that much better. The machines have become much quieter than they used to be. The nasal piece still gets dislodged sometimes and causes noise until it is repositioned. To me, it is a must that he wear it. He definitely sleeps better with it and the sleep is more restful. But, most importantly, he breathes. I have heard of many people who sleep so much better with it that they are happy to adjust to the initial discomfort because they feel so much better in the daytime. A good number never adjust. Still, I think if they are recommending it, it would be a good idea to go through the testing. That way you'd know what you are dealing with.

We had the sleep apnea test done in a hospital setting but it was in a unit separate from the main hospital. The bed was very much like a hotel bed and the room did have a TV. They set the test up for when you sleep, though, so once the actual testing was started the TV was off for bedtime. I could have stayed with him but chose not to do that. He was fine without me and I needed my sleep, which I was certain would not happen there.

I will be interested in hearing about the ongoing process too. Sounds quite involved.

Hope you are on the mend. That flu bug seems to be a bad one this year. ~~Donna