From SO scared, to super sad, back to my baseline (numb)

ButterflyWings

I hope everyone has some joy and relaxation today. The last couple of weeks at our house were so crisis-filled I felt almost guilty posting more bad news, plus had trouble even catching my breath to post about some of this, so did not. My challenges are not nearly as tough as what some of our forum mates have had to deal with recently, so my heart goes out to everyone else who is also scared, sad, numb, or just done.

Here is an update and also some questions interspersed (maybe unasked) -- so feel free to share any feedback or suggestions if you want. I have spent much of the nearly 4 years since diagnosis literally numb, with breakthrough periods of sharp emotions or just realizing and naming what I am feeling at any given time in response to this journey we are on. 

You all know the rollercoaster of experiences (crises) and corresponding emotional swings we caregivers go through. Two nights ago I almost posted that I was SO scared, terrified honestly at what felt in the moment like the 3rd or 4th recent near death experience with my DH. (Almost choking to death on food; acute asthma attack; unresponsive and seizure-like in the bathroom; and most recently another sudden vaso-episode of passing out with me trying to hold him upright or let him down to the floor gently without one or both of us breaking something). In those moments it is terrifying to see how close he is to being gone with me helplessly watching - trying to figure out how to keep him comfortable and pain free as possible, while dialing hospice emergency for coaching -- as each of these episodes has been a "1st" except the most recent one. 

I did not post the acute fear of watching what looked like his final minutes, yet again.  I paused as the adrenaline subsided after he stabilized, and a wave a deep sadness swept in. I know that one of these times, possibly soon, it really will be the last time. That extreme sadness emerged along with exhaustion so I just went to sleep alongside DH. And woke up numb again. Numb I know quite well. That's been my baseline for a long time now since right about the time I joined this forum. It protects somewhat from the trauma I guess. At least for now. Today I am just relaxing. He seems not to be in pain, and the swelling is down a bit. His asthma finally cleared up the first week with new hospice team due to their med changes and equipment support.

Here is a recap of our week and current status. Any experience or suggestions welcomed.  

• Progression to 6e. Using more gloves than ever before. Need a diaper-pail smell antidote.
• (added): Tremors increasing causing violent shaking of hands and splashing of food and beverages, but DH is so resistant to assistance we are wrestling things or he clams up. (and won't drink the liquid to take his meds, etc. Some can be crushed, others cannot.)
• Sudden swelling of his jaw and chin on one side yesterday alerting me to a dental emergency. Tried to look inside as told by his nurse but got bitten. Not on purpose I don't think - he doesn't understand my words and is generally not compliant especially with anything related to his body. It looked like he was pocketing food its so big, but there is no food there. So, I think it is related to the molar that broke off a few weeks back. His new hospice prescribed oral antibiotics and pain meds starting last night. (I saw an older post from Iris about abcesses and the meds may not help). Doc also said get hydrogen peroxide to rinse after eating (I'm housebound and can't leave him nor drag him to the car) so I tried it with Listerine, but he doesn't understand "swish and spit" into the bowl. Kept swallowing it. So no.
• And a 2nd fainting episode of DH passing out in the john - this time after standing, before I could get his briefs and pants up and back to bed.  We are really lucky neither of us has been injured. I'm truly very grateful for that. I was able to use the oxygen for the first time, and he stabilized. 

It is good that the 2nd hospice company enrolled him right after the original one discharged him. Otherwise I would not have had the rollator at the ready, fall mats on the floor, o2 machine and training, or 24/7 nurse on call to talk me through what the heck to do. 

M1

BW all of that sounds absolutely exhausting--and scary, as you said.  It frankly sounds like too much for any one person.  Is there, by any chance, an inpatient hospice near you that he might be eligible for?  Because it really sounds like he is physically too big for you to handle on your own.  I realize it might not be possible, I'm just trying to think with you.  I'm so sorry.

Battlebuddie

Butterfly Wings,

  What a crazy time you have had! And this is the patient Hospice thought was stable? Sounds anything but. 

   I’m so sorry for all you are going through . It’s so many different plates in the air, and when you get one spinning again another one starts wobbling. 

   That sounds like too much for one person. I’m so glad you have the new Hospice on speed dial.  

   I know what you mean when you say each near death experience triggers emotions. It’s like that when my husband has a seizure. It’s aweful.  I don’t have any other words of wisdom right now but I feel for you I really do. 

   You are doing an amazing job . You really are. Hang in there. 

ButterflyWings

M1 - Thank you always for sharing insightful and caring feedback. 

Yes it is a lot and I can surely see that a continuing of the 'blood pressure dropping and passing out' issue especially, will require a 2 person transfer to get him from point a to point b safely. And that is if nothing new emerges which is not a given. DH is not much larger than I and definitely not as strong as I am now (shocking me to even note that), but we have a formerly active member, McCott whose back was broken when she tried to buffer her DH's fall. I don't want that to happen for sure. 

His new hospice cannot send anyone to assist urgently and wants me to call them to advise and then rely on our firefighters/paramedics for a lift + transfer assist if needed. That's fine with me. They know us and are fast plus have assured me repeatedly that's what they are there for and they complimented me on the care he is getting, the last time he needed help off the floor (a month before our post-office drivers' seat standoff).

Current action plan: 

1. Since DH is now under VA healthcare and with a new hospice organization contracted as the VA liaison, we are trying generally to sort out what options are available to me.
2. I spoke with both the hospice after hours nurse and VA on call, and the latter said all they could offer for the ballooning jaw was ER (call 911 if I cannot transport). 
3. For the urgent health issue, we've requested a VA PCP consult (referral) to a traveling dentist so they can check his mouth to understand is this a potential abcess, sepsis, symptom-type issue they can treat for comfort and pain remediation to avoid being negligent. 
4. I am supposed to nag the SW to follow up on vetting new HHA agencies to fill the 15 hours VA has approved but its on us to find a reliable replacement since mis-fire in March

Remaining challenges: 

• I am less likely to nag someone to do as they are getting paid to do, and have promised. More likely to spend time this week making those calls myself. That way, I will have our new CNA vist 3x wkly, nurse 1x wkly (both are already occurring via hospice) and then an aide here 3 hours a day, every weekday. That would be huge. Solo is getting risky.
• Yesterday, I left for 3 hours to test the waters of resuming part-time teaching (a weekend class for summer, for now). A friend and son came to cover, and I fed DH and administered meds before leaving. DH slept the entire time.  It went great, and I was so relieved since they are committed to doing Saturdays all summer, and I know they won't be a no call, no show as the agency aides have been. I paid out of pocket (most of my earnings haha, but that's ok, it was a respite moment too.) ***Murphy's Law, guess who slipped and disclosed they are unvaccinated, as we were chatting about how well it went? 
• I respect peoples' right to choose for themselves but not for me! I don't want to be around unvaxxed folks, though I am starting to think I shouldn't worry so much if DH does get exposed since he is terminal and late stage anyway. I don' t want him to suffer unnecessarily and am definitely not inviting or encouraging it...just seems like if I want help, I will have to let that requirement go. But, I really don't want to get sick either. Both our lives go up in smoke if that happens.

Back to the comfort of my numb cocoon. We will see what next week brings. (And M1, I hope it brings you a return of the positive visit time with your DP. They need to move the yelling resident. That is an absolute trigger for a PWD.)

sandwichone123

Butterfly, that is too much! You've been holding up amazingly, but that is so much to bear.

Your hospice should be able to provide some mouth swabs (like oversized flat q-tips) that you can use to clean out his mouth and then dip one in Listerine to swab the area. You may also be able to ask them for an oral syringe to squirt the area, and then to vacuum out the drainage (make sure his head is turned to the side so he doesn't aspirate it).

A good-sized chunk of ripe watermelon might be enough liquid to swallow meds.

Olly_Bake

My LO has severe copd and often this year he has been unresponsive. So last time he was in the hospital, they took him off his Spiriva. He currently has to do prednisone (sorry albuterol) every 6 hours and stay on his oxygen. Of course at times, he fights me tooth and nail and refuse both. So the home health nurse suggested adding on Mucinex and Zyrtec. So he gets 600mg of the Mucinex and 5mg of Zyrtec (broke in half/instead of 10mg). I can’t tell you how his breathing has changed and the unresponsiveness has lessened. 

At least, last week was decent. They don't have him on any meds that can drastically drop his blood pressure do they?

The hospital suggested a sleep study to see if his oxygen level has changed and to see if he qualifies for a bi-pap machine. I am undecided because trying to keep him awake from five in the morning to almost eight in the evening will surely be a battle. Then they want me to stay with him for the test. Me, the girl who has undiagnosed insomnia.  Again, I know at times he refuses the other so have a week to decide if I'll follow through. His unresponsive always (according to hospital) was when carbon dioxide level got high. So that always gave him comfort but I just don't know. It's a darn if you do darn if you don't with oxygen.

My home health nurse said on the meds that said they can’t be crushed and doesn’t come in liquid form, we just had to take our chances and so far so good. His blood pressure med, I refuse to give twice a day and only give once early. 

I know you said the new hospice made changes, but we are just so very concerned about your DH and your safety. I know nurses always say, don't try to stop a fall, but that is very hard for me to do. I always try to intercept. Never forget one time dad was shaving and then all of a sudden I saw him going backwards falling toward the tub. I grabbed his hand and held on for dear life and the fall still happened but thankfully no injuries.

I’m using so much yogurt and puddings now to entice him and make sure he gets his meds. One good benefit to that is we don’t have to do stomach meds to make him go anymore lol and I remember reading your DH was having that problem as well. The speech therapist told me last week about rinsing dad’s mouth. I’m like ah ok. But on the day he doesn't remember to swish and spit as you say with your DH, I’ve been trying to find these big q-tip like things they were using in the hospital to clean his tongue and mouth.

I don’t know what to tell you about that broken molar. Toothaches are nothing to play with OMG. I’m hurting for your DH. Most pain meds don’t work for toothaches I believe unless it knock you out. So glad to hear hospice is working with you to get DH relief.

You say DH is not much larger than I. But when they can't help, I promise you 125 feels like much more. I too had to call the ambulance this year when attempting to get dad from his old recliner to the wheelchair. Down he slid. I felt horrible not being able to muscle up and place him where needed - back in the freaking wheelchair..

I agree, you are amazing. And, we will never judge. 

ButterflyWings

HelperHeart - the spinning plates, yes, that is the feeling exactly. As soon as we all get one thing figured out or stabilized, up pops something else we never saw coming. I feel for you with your DH's seizures. This is only 2x in the 20 years of our marriage and made me a nervous wreck to witness - I don't think it is something you can get used to as a caregiver. Our poor LOs suffering is just too much to watch without our own distress. I am sending you strength, too.

Sandwich - really good tips thank you. We do have the hospice dental swabs on hand. I wasn't sure if he would bite it and swallow when he's not processing well. It is worth a try earlier in the day maybe when he is usually most clear and cooperative. And we have a syringe already! Never thought of that - will try it today. And watermelon is a great idea! I am going to stock up on applesauce and puddings too. Wasn't prepared for the soft foods stage yet, and didn't think about it maybe being something we would need periodically for meds. even while still eating solids. Long ago, when he first started those teeny 25 mg Seroquel tabs, I'd hide one in a blueberry in his morning bowl of cereal and watch him eat the "loaded" berry before moving on. Thanks again for the ideas. Will add some melon to our grocery order now.

Olly - Excellent points and whew, I don't know how you have handled all that. Like the meme says, we really don't know how strong we are until we have no choice. I appreciate you sharing the experience you've had with different meds and I will review that info. Definitely will share with his new nurse who is also great. We have been fortunate in that regard. DH is not indicating tooth pain but I'm sure he has some. He just says he doesn't feel OK, but can't say why, where, or what. But once his face started puffing up we could put 2 and 2 together. 

Whenever he is most agitated and non-compliant it usually has been infection related (UTI in the past, but this is clearly in his mouth). Part of me thinks if we can get the dental infection under control then his shakiness (serious hand tremors) and fainting (wobbliness, lightheaded unresponsive episodes) may disappear. And the antibiotics typically give him the runs, which is bad timing as it was hospice Senna Plus decision that pushed the bowel incontinence forward suddenly. Meanwhile, I am keeping the rollator close by, and will get back to expanding the care team asap. I still plan to care for DH at home as long as possible, and never expected to do it solo. Help is just hard to find and keep, these days.

Thanks for the encouragement and for also being super caregivers yourselves. You all deserve certificates and medals for this tough, tough work.

jfkoc

The numb cocoon sounds good to me that and the acceptance that we do our very best but realize that nothing is going to change the path our loved one is on.

It is really hard...really hard!

Please do not short change yourself. You are doing a terrific job!

Quilting brings calm

BW- you have a lot going on.  I’m glad hospice is there, but it sure sounds like most everything is still on your shoulders.     Take care

mommyandme (m&m)

BW, you’re amazing.  Taking care of a demented partner/spouse is something I cannot even grasp.  Even though I’m caring for my mom, I get the numb, completely, and the rush of emotions of fear etc… 

Is it possible to transition to bed changes only instead of in the bathroom?  That’s what I’ve had to do.  My mother isn’t mobile except for transfers.  My mom also faints and loses blood pressure and O2 levels which was the initial reason I called hospice in a year and a half ago.  She actually had an episode just sitting in her chair about a week ago.  That was new, probably from a bowel movement or something.  

My husband is currently significantly sick with covid.  I’m trying not to get it of course, especially cause of mom.  We’ve all been vaccinated.  Yet, we joke, what if? That feels terrible and horrifying if mom were to succumb to the virus.  

I guess my point is I understand the range of emotions this ugly disease demands from us and I’m so so sorry! 

Mint

Butterfly don’t feel bad about posting bad news.  That is how it is for some of us.  From one bad thing to the next bad thing.

My friend on hospice near the end went into a nursing home facility under hospice.  Maybe something to consider.  Know all this has to be exhausting even if you are numb.

Olly if he is refusing albuterol and oxygen, highly unlikely he would tolerate cpap or bipap.

Hope things ease a bit for you guys

Iris L.

Even vaccinated and boosted people are getting infected with the new variants, B2+.  I think it is most important to avoid people who have been exposed to known Covid patients.  So if the friend and son who come to give you respite ever think they have been exposed, they should quarantine themselves.  At least, stay away from your home.  Also, continue handwashing and masking and social distancing, as much as possible and as much as you desire.  Of course, it depends upon the case rate in your area.  Where I live, the case rate is rapidly riding again even though it was very low just three months ago.  BTW, when you go to class, you will be exposed to a lot of people, whose Covid status you won't know anything about.

Iris

ButterflyWings

Jfkoc, QBC, M&M and Sayra - Thanks so much for the words of wisdom and support. Your encouragement means so much to me. Cautions and concerns as well. Yes, I am definitely seeking info and options to be aware of -- since we never know what will happen. I especially wanted DH to have his VA access in case something were to happen to me; he could be cared for in that system. Hoping that isn't how all this plays out!

Iris too - many thanks, and you make good points for me to consider about covid decision process. These 2 have been traveling internationally recently. I was shocked that apparently there was no vaxx requirement to re-enter the US, only a negative test prior to flying in. I was just assuming. She will be resuming work with little ones during weekdays so that is likely a high potential exposure setting. I have no idea about the son. If DH would only go with me and sit and watch something on you-tube or eat a meal or whatever. (Who is the delusional one now?!) But those days are very far in the past and despite his current physical challenges, he would find the strength and resolve to elope, most certainly. 

Anyway, the space is very large with multiple big windows that open for fresh air and ventilation if I want, and sufficient space to maintain > 6 feet distancing between people at all times. Many (not all) were masked (I am) and supposedly vaxxed but we can't require it. I may offer them masks, and some more might accept. We actually spent 1/3 of the time outside, it was such a lovely day. I was fortunate to be given the option of a hybrid class (all other days for this summer class are remote) and I can switch the in-person Saturdays to remote as well, if needed. Will watch the counts closely. If I get sick, bills will not get paid, no groceries ordered or delivered, and who knows what else would happen even if I just had a mild case...so...I have been super cautious not to risk it. Especially with a vulnerable 80yr old DH with asthma and Alz. BUT, it's the same risk with the aides. No idea if they are vaxxed, or exposed to the virus (sigh).

Joydean

Butterfly wings, good to hear from you. All you and your dh are going through has to be so hard on you both. Have no words of wisdom but sure sending you words of encouragement! Honestly don’t know how you do all that you are doing and have been doing. 

I was thinking of what you said about your dh not much bigger than you, but when they can’t help their self they become like dead weight and you could get hurt really bad. I know you are careful. I hope you can get aid’s that the VA promised. 

Thank you for letting us know how you are! Take care of yourself! You have been missed!

Jo C.

Dear Butterfly, I have responded to you on another Forum and you have had great input from so many here who all care.

One thing  I wanted to remind you of, all Hospices have "respite" care where they can admit your LO to a care facility for five days at no cost to the patient to give the caregiver a rest.  This is a federal law that this be available in all Hospices.  Just a little something to keep in mind for a possibility if necessary.  When a respite admission is made, Hospice continues to follow in the care facility.

I send you warmest thoughts and a big soft hug,

J.

May flowers

Wow, BW, I’m sorry all this is happening and you must be so overwhelmed with it all. Is respite an option? The hospice nurse or one of the CNAs may be able to bring some peroxide to you. In the meantime, coconut oil is purported to work against oral bacteria and is safe to swallow. Might not work, but sure can’t hurt to try.

(((hugs)))

ButterflyWings

Joydean, Jo C and May flowers - Thanks for the uplifting input! I recharged lots today, by cooking a bit (and enjoying eating it!) reading and posting lots in this priceless forum. You all are really the best medicine for fellow caregivers -- no one else in the world understands what we are going through. 

It's been a good day. DH slept a ton -- I got him up to eat a couple of times and he was right back to sleep. That was a respite break in and of itself!  I am about to turn in now too, just in case he wakes up ready to roll before sunrise after getting all this rest lol. Never a dull moment in dementia-land, that is for sure.

Respite care is one of the things the (new) SW was going to research last week since DH's hospice care is now billed to the VA. We need to know what is different now that Medicare is no longer in the mix for his services. (That reminds me, I need to actually cancel his Medicare insurance and supplement so they can stop deducting the premiums each month. He will not be going to the hospital again, or seeing other providers that would bill to Medicare. Meds and all else goes through the VA with lower or even zero copays for most things now).

Anyway, I do look forward to getting clarity on how VA respite compares to our prior Medicare hospice respite option. But at the moment I don't really want a getaway or anything like that. I feel more in need of getting the longer term day to day respite or regular aide help in place. Aka getting back on the horse to try another agency and aide as soon as possible. Ideally, I can make progress identifying a reliable HHA to help us out 5 days/week for a few hours. I don' t want to go anywhere. Except maybe the farmer's market and to plant a flower or late veggie (1-2 plants not a whole garden just yet) in my yard lol. Getting the basics in place will help me more than a 5 night respite stay for DH right now. I'd like to get to the bottom of this dental infection too.

We have been through so many changes just in the last few weeks  -- with new hospice team members and equipment in and out: (Nurse, SW, CNA, warehouse delivery, pharma delivery, plus different docs + paperwork + video visits), med changes. A whirlwind on top of, or maybe contributing to, all the other AD episodes I've shared with you all recently. Honestly, I don't have the energy to do the interviews or virtual visits, packing + labeling, etc for another respite visit just now And not ready at the moment to deal with getting DH re-acclimated upon his return from a different place and routine...especially since he is nowhere near stable at the moment. I think it would be asking for trouble, and I wouldn't get much r & r under those circumstances.

Anyway, we are doing much better the last 2 days and I am going to focus on getting help at home (repeating myself here) and getting clarity on what our VA options are for any and all next level help should it be needed sooner or later. 

Thanks so much for your thoughtfulness and support. It means so much. (And I will check out the coconut oil May!)

Fairyland

Just a note about vaccination, I am a clinical scientist, super-pro vaccine, have had 4 shots, one recent, and still got CoVID badly last week. At this point in time I feel that it is something we need to try to get over worrying about and live with as best we can, going forward. The unvaccinated have already caught the illness so have some immunity. The vaccinated don’t have full immunity, and vaccines are not 100% effective at the best of times.  Let it go IMHO and get on with life, we all have more than enough stress already.

May flowers

That makes total sense. I feel the same about the daily help vs. a week of respite. It’s hard to recharge when you know you’re coming back to the same issues and probably new ones from moving/disrupting his routine. 

The break, even for a few hours, is just enough for me (for now) to clear my head and recharge. An unanticipated benefit for us is someone else shares and understands what we’re going through daily, more than the visiting nurses. 

I hope you find someone soon.

One thought on the toilet fainting - raising his feet up while on the toilet (if you can get him to do it), using something like the squatty potty might make it easier for him to go without straining. Maybe? 

CatsWithHandsAreTrouble

BW I'm so sorry things have been so rough for you and DH! I hope you have as good of a day as you can. I've not much to offer other than a listening ear and some hugs for you. (((Hugs))) 

You've come this far and should be proud of that. You're doing your best, and your best can and is different from day to day. Remember to give yourself grace for the differences.

mommyandme (m&m)

Fairyland, thank you for your input on vaccines.  I’m not a scientist but have come to the same theory on living life and moving on.  Again, thank you. 

BW thanks so much for all you’ve shared, it’s very appreciated. And that goes to everyone here. 

jmlarue

I sincerely hope you have a better outcome getting help through the VA than I have. The SWs always tell me that DH is entitled to all these benefits, including in home care. They also say that I am entitled to that help as his primary caregiver. Here's the rub: The VA only has a single provider of in-home caregivers in our area and all they are able to offer is a whine about being short of staff. Months went by without a single referral. I received a grant for 32 hours of caregiving from the Elizabeth Dole Foundation - nothing came of that, either. Same whine - short on staff and NO ONE available within your immediate area. "Feel free to hire someone yourself and we'll try to work out a reimbursement." I tried for several months to hire someone on my own. Vetting anyone as a private individual is a difficult task. I finally took a chance on one woman. The day she was supposed to start, she was a "no show." VA says I'm entitled to 30 days of respite care per year, too. "Oops, sorry, there are no beds available." Round and round I go. I've given up. DH's behavior is so volatile now, I doubt any caregiver I hired would last a day, so why bother?

I kept DH on his Medicare Advantage plan. It's a safety net when a health issue is urgent and the VA is slow to act. In all things, it's good to remember that the VA is on par with the way elephants have sex - slow and laboriously.

​fesk

BW, you have certainly been going through a lot lately. I'm glad you got to recharge a bit today.

For the vasovagal events, I remember being told to let my mother sit for a little bit after going - not to get up immediately. Also, it's important not to have a lot of up and down. So, if your husband can't stand on the first or second try, better to let him rest a bit before trying to stand again. I also read that squeezing the hands will help with the blood pressure. Also, keeping hydrated is important.

Initially, I was looking for caregivers who were vaccinated, but that's getting more difficult. Plus, if they are vaccinated, they are not getting continually boosted, so I would consider them unvaccinated too. I agree we need to find a way to live with it. I am in favor of the caregivers wearing a mask around my mom.

abc123

Dear ButterflyWings, I hope things continue to improve for you and DH. I agree with you about getting the every day issues in line as opposed to a 5 day respite. You are a great caregiver to your husband! I could not handle all the things you deal with daily. You are always kind and encouraging to all of us here. I admire you and I’m grateful to you for the encouragement you share with me. 

The first few years after my mother’s diagnosis I was very angry about it. I was also extremely angry with my dad because he put his head in the sand, as if the disease would go away. These days I think I’m numb. I’d rather be numb than angry. I was so mad that this disease hit my life three times. 

In 2017 I had two major abscesses! Doing the swish and rinse with warm salt water several times a day gave me a lot of relief. I wish your DH could follow instructions. Please take good care of yourself! Also, take credit for being a great caregiver. We all know you earned it!

Sincerely,

abc.

SusanB-dil

Butterfly Wings - ((hugs))

Just putting in my 2 cents - just a minor thing, but that poo-pourri stuff does work in a diaper pail environment.

also - abc123 said: Doing the swish and rinse with warm salt water several times a day gave a lot of relief.   So - if he swallows the warm salt water, pretty sure that should at least help, other than the Listerine, and if it does help, that would be a good thing...

Also - Posting not-so-good news helps those of us who don't see it coming. There have been a few issues that have come up with both mom and MIL where this forum has lessened the shock for me.   A heads-up, so to speak. It is an "oh, yes... saw that in the forum".  Or checked out the 'archive' and have gotten some good advice (and commiseration).  So yeah, don't ever worry about posting questions and/or rants and frustrations. It may help someone else get ahead of an issue and also helps to know 'not alone'. I'm positive it also helps the post-er get it off their plate and get some needed advice.

Sometimes, good news is posted.  And that can give some hope that not every day is such a bummer.

It is frustrating.  it is hard.  It is horrendously hard at times...  I would wish that all of us would get some respite when needed. Maybe unrealistic, but, we can hope.  I hope you do get some relief.

ButterflyWings

I just want to thank you all so, so much for all the encouragement and helpful tips. It is still up and down here, but we both are doing much better. DH has been sleeping long hours the last few days (thank goodness), so I have joined him. Dustbunnies inside and uncut grass outside can wait another day or two.

Fairyland, your perspective and expertise re: vaccines and just adjusting to life with covid is appreciated. Jmlarue you made me laugh so hard, when I didn't think I could! Yes, also am nodding my head at the reality of slow-motion VA progress. That is proving to be my experience too. So I am being the squeaky wheel when I have the energy, and that seems to be helping somewhat. Though I haven't heard a peep yet regarding the emergency dentist consult (referral) request that hospice told me to request. You make a good point about not cancelling his Medicare backup just yet. May flowers, Cats, M&M and Fesk - your compassion and support are truly appreciated. I know you all are in the trenches as well so I am sending those priceless hugs right back to you. They go a long way toward getting us through the rough patches. And Abc & Susan, how could I possibly have forgotten the warm salt water technique after all the years of relying on that for sore throats, gum irritation, toothache, etc. My dear mom is looking down from heaven and shaking her head saying, "Really? You know I taught you better than that" lol. It helped DH a lot and the antibiotics did kick in. Finishing them up in 2-3 days and we will see how things go after that.

Wishing everyone well despite dementia challenges. Hang in there. Thank you again.