My "whine moment today." What's yours?

Well done guys keep up the good work and advocate for your loved one. If something looks wrong to you,
. It is until proved otherwise. Jeanette hospice may not treat UTIs but they have a responsibility to see she gets the treatment she needs. The RN can pick up the phone and request a script from the Dr and they ashould either call it in or fax it to the pharmacy. often with a small hospice the pharmacists will know the nurses and they can just call with the Dr permission and the pharmacist will give it to them there and then. Hope you had to learn the hard way but Jeanette you are forwarned so go ahead and jump up and down. (It's good exercise anyway) It is possible Jeanette that Mom is having having swallowing difficulties. Unfortunately this can just be part of the disease progression. keep her meals soft and eacy to chew and avoid spices tiny pieces. Rice can be a problem unless overcooked and mushy. Make sure she drinks with her food. Very tender chicken in gravy with mashed potatoe and cauliflower would be a good choice or fish or pasta. Add a little sugar to pasta sauce as it is sometimes too acid and that irritates the back of the throat. Hospice may have a dietition. Hospice nurses may be excellent but may know very little about dementia. They deal with a lot of anxiety and odd behaviour at the end of life and use the necessary drugs but dementia patients are rarely admitted on that diagnosis, they have to show physical decline to meet the criteria. So you may well know more about it than they do. This is not a criticisem of the nurses just that few nurses want to work in mental health or geriatric care so simply lack the knowlege
I have learn far more about dementia here than i did while actively working in hospice. Even the certification exam for hospice nurses had few questions directly associated with the subject. They might ask about the best drugs to be given foe end of life anxiety but that was as far as it went. the primary Drs were also not knowlegeable and would prescribe whatever the nurses asked for. it is a sad situation but another example of needing to educate ourselves and keep asking for what we want and check on any new drugs before starting them. it only takes a few minutes to google something and find out the side effects and whether it is safe to use with drugs the patient is already taking.

I agree Veronica! Google has been a great resource for me when researching meds and what interacts badly or is it ok to use this with that, etc. and then use that with the knowledge you have through what you know to be the case for your loved one...I have to say that I had been telling them for some time I thought Mama might have a UTI and they just kept telling me it was just "end of life" processes...but the more I thought and prayed on it, the more I thought, well why the heck would we not at least TRY the UTI meds...what if they are wrong and I am right this time...thank God!!!! Mama is smiling again, talking again, laughing again...I have had five days now of excellent quality time with her, NO fevers (hospice told me the fever was just something I was going to have to live with at this point) it is a different world...I know Mama is frail, but I KNEW Mama and I have seen the symptoms before, so if it takes it to get someone to move I no longer have a problem showing my hiney to get people moving.....

I'm not saying I know all there is to know by any means but going through this with Mama really makes me feel proactive in wanting to do something down the road with these issues....How many times people have written my Mama off...and yet, here she is ...happy and able to enjoy her life again....I've got a little fire lit under me now... :) and I like it....

While I am thinking of it, another thing that I discovered for Mama, those little padded foot things they usually give folks in the hospital to relieve pressure on their heels??? they are also excellent for placing their elbows in...Mama had started getting the ominous red patch on her bony places on her elbows and I started resting each elbow in one..they are soft and padded and kind of "float" her elbows..the red patches are gone and they also keep her arms from getting accidentally caught in the bed rails without having to cram all those pillows in there...those are also great to turn upside down to protect the tops of their toes, which will also eventually get little red patches if you don't watch out... just wanted to mention this helped us...in case anyone else is having that problem...

Jeanette - if you're worried about skin breakdown with your mom wearing depends, get some Boudreaux's Butt Paste. I know, sounds funny. It's a baby cream for diaper rash, but it's also an effective barrier cream and contains ingredients to heal the skin and protect it. Awesome stuff. It was used for my dad's legs to help keep the skin protected.

Also...if there are any small breaks in the skin, get some MediHoney. You can't get it at any pharmacy, has to be ordered online. I've found it on both Amazon and Ebay. It's NOT cheap...but it's awesome. Dad had ulcerated and dead tissue on both legs (shins) for decades. Nothing helped. Wound specialist kept putting him in Uno Boots, which only made it worse. They would debride the wound (incredibly painful), then re-bandage again. Raw, open wound under constant pressure from a bandage - how did they think this was going to be a good thing?? By chance, a new wound specialist saw him when he was in the hospital and started using MediHoney. Within 2 weeks, my dad had new, pink, healthy skin in areas that had been either ulcerated and raw, or black and dead - for years. It was the first time in decades his legs were looking healthy. I'm currently using MediHoney on my very badly cracked heels (a wintertime problem for me). I have tried all manner of remedies specifically for cracked heels - they work for a while, but if I stop using them, the heels crack all over again. This time, I had a small vertical crack coupled with a horrible horizontal one that went all the way across the back of my heel. Very, very painful - I could barely walk. Started putting the Medi-Honey on a large band-aid and putting it on my heel every morning and every night, and within 3 days, the cracks had healed. I'm still using the Medi-Honey on it every day, because there's a lot of tissue damage to be healed before it's completely better, but 3 days is a major accomplishment when it comes to healing cracks in your heels when you're walking on them all the time!

well today Mom, Aunt, Daughter and I went to the funeral home to finalize the cremation. All went well and the guy was very nice , helped with the obituary (only going in the paper where they lived, not here), etc. Was relatively pain free and I can pick Dad up tomorrow. Spent alot of the day on the phone but got almost everyone called/done with but social security. Everyone has been wonderful. Mom is very teary because "today is the last day",, thank God my aunt is here. I may live through this.. but I feel like the paperwork needed is so much you don't have time to grieve. I guess I will in a few days?

You and Mom are doing well Pam. Once the funeral is over you will be able to feel some closure and hopefully relax a little. hHgs and prayers

How do I block someone? Their profile pic is so gross that it makes me want to toss my cookies every time I see it.....ugh. (In their defense, I'm sure they don't mean it to be that way, but it's making my stomach flip every time I see it.)

Take your time Pamz. Make sure you get several certified copies of dads death certificate. I don't know if your dad had pensions but each one will require a certified copy. It's nice that your Aunt is there to help you out during this very sad time.

I made my brothers go with mom and I when we picked up dad. I don't think I could have drove home... so surreal.

Thanks for all the suggestions girls! Mom finally got and started her cipro. Her doc has been our for a week, they didn't know anything about the Urine sample, the hospice was supposed to call but I guess didn't... blah blah blah. Just a series of misfortune all at once. Bad timing? She was up all day yesterday and ate 3 nice size meals plus her nutrition shakes. Slept all night, got up early, peed in the toilet twice (also sometime during the night) had her shake and banana then out like a light for several hours in her recliner... woke up so awake and lucid it scared me? She could almost walk again? Said she had to pee and was hungry. Well YES MA'M!

Hope, I wander if those children floatie things will work on elbows? I will ask hospice about them. Also want a definite answer to WHO prescribes antibiotics as I will NEVER go through this again, neither will mom. Oh, I found a plastic shower liner that now is part of moms bed, all several pieces of it. Takes a bit of getting used and oh HELL YES, I do appreciate those who've traveled this road ahead of me and willingly give advice. That has been a lifesaver for me.

Susan, I have Butt salve on my list for tomorrows venture. I looked again today and the crease lines are gone. Also going to order the medibutter and some of those lovely gowns Hope gets for her mama.

I still have plans on sending her to respite on Wednesday but changed my plans. I'm not really comfortable going away and just leaving her for days without checking in on her physically. It will be heaven to sleep in or stay in bed if that's what I choose to do. Besides, I still have taxes to do and this way, I won't have other more important things taking up my time/thoughts.

Just so y'all know.... I truly appreciate each and every one of you!!

SusanA43, I think I know which screen name photo you are talking about. Makes me not want to read anything in that section :0

I don't, but you sure have me curious.

Maybe she means that bleeding lower lip picture?

If nothing else, this is a sure fired way to get everyone to browse through every comment :D Awesome! Spill it Susan I have no time for this ;)

yes, got my curiosity going now.....

Jeanette!!! Yay!!! Isn't it amazing at how quickly that begins helping in most instances..praise God! Yes, it is ridiculous what you go through and almost always because a doctor was out of town and no one knew a test was done or someone was waiting on results...blah, blah, blah...that's why I had to just start sitting on them til they moved. That is a good idea, the little childrens floatie things...only thing with those might be the plastic type material might cause an issue with the skin...on that note, which I know you do already, but when I used the vinyl tablecloth folded up as a draw sheet, I covered it with soft cotton towels so there was no vinyl to skin contact, which creates blisters...and eventually could and probably would lead to pressure sores....I've also used rolled up towles, little throw pillows, etc...but the little foot things work so well I think because of the very shape of them the elbow just fits gently in there...I'm sooo glad your precious Mom is feeling so much bettter!!!

I'm like you Jeanette, when Mama is frail I just can't send her to respite...I'm also such a control freak I suppose that i am afraid they will get sidetracked and forget to give her her Cipro on schedule . I 'm hoping Mama continues to improve and if so, I may be able to do a respite thing as spring nears...and the bugs and viruses that have been running rampant have subsided....Mama is so happy now...she has been laughing and even talking..granted most of it does not make a lot of sense, but still she is so happy and she tells me she loves me and hearing that again after so long has made my heart soar...even better than respite for me to hear that....

Last night, one funny, I was singing a bunch of those silly Hee Haw songs and she was laughing..I was making verses up as I went along based on our adventures and she was just laughing...at one point, I had accidentally "tooted" (sorry for tmi there) but shortly after, I thought I heard something and she started laughing and I said ..what are you laughing about???? she said..."I let one and we're all guilty"...than she started laughing ..she was so cute..I know we're silly, but it is so much fun....just as I was putting her to bed last night, she told me she loved me too.... and I think back to hospice telling me they thought all of her symptoms were just part of the end of life process. In my heart it was so confusing because she had been doing well just after getting the abcess tooth out..and then just took a nose dive...thank God they gave me the cipro..I kept telling them I felt absolutely certain she had a UTI.....and she did...thank God......

Got my new reading glasses yesterday so maybe i will be able to see some of the avatars more clearly. Even now i am sure Pams is not a 20 year old nurse!

dingdingdingding! Pam wins. The lip picture is killing me. No offense to the person that posted it, but it makes me want to gag and toss my cookies every time I see it. I've started avoiding any sections of the site but this one because I don't want to encounter it. Why even post something like that? I mean, really?

I don't guess I've seen that one..or if I did I didn't know what it was.....

Hope, you can find that screen name photo as one of the answers under the question where the mother panics if her daughter doesn't answer the telephone when she calls.

I know I didn't come on this website to see photos like that. If I want to see such a thing, I would volunteer in the ER.

If I remember right, the photo is of the wound inflicted on her when the person she cares for bit her.

And they bit her on the mouth???

You're kidding me. First, that sounds like a very odd caregiving situation. How did her lip get in a position to be bitten on the inside?? Second....why post it? Again, I mean no offense to the person posting it, but if I want to see raw, bloody tissue like that, I'll take a job in the local ER. Caregiving is rough enough as it is, for most of us.

When I first saw it I was a bit grossed. Then I figured that caregivers are all different people. What I find offensive might not bother others. Still, the picture gave me a negative impression of the person's caregiving "experience." If my mother lunged and bit me like that, she would be in a care center.

Thanks for the great tips!! It's like just when you get one thing down pat, things change and you have to rearrange it all again. The cipro is working... she didn't pee at all during the night. However, she did slip through the side rail... just her torso area. This was around 3:30 a.m., she doesn't call out for help, she just starts talking, so when she chatters I know something is wrong. Sheer willpower is how I was able to get her back into her bed. She was up for awhile, had her morning meds. The case nurse came by and I had her put mom back to bed and give her a thorough once over, head to toe. It's not a pressure sore but it could turn into one. There is a blister on her heel from keeping them elevated. Bummer. The nurse put one of those heel protectors on it.So, ... extra vigilance keeping her off her backside and hells floating for awhile.

I cancelled respite. I wouldn't feel right, I'd worry too much and imagine her scared, bewildered and upset, so... there will be time to rest one day.

I wonder if I will ever get my sense of humor back?

I did get a chuckle from Veronica's comment... hehe!

Hit her, I think. But it could have been bit. It was a while back. I remember thinking it certainly made a point at the time.

I have an uneasy feeling that mother's GP thinks we're on the same page only he's actually several pages ahead of me and I've missed something. He decided to stop mother's diuretic today and see how she gets on; I'm to call him on Friday to report in, and resume the diuretic if I get worried - he knows I know what oedema looks like, but even so I think he's got more confidence in my diagnostic skills than I have. I'm also not quite sure why we're doing this and didn't really like to ask. Getting rid of unnecessary meds, cool; but how is the diuretic unnecessary? I'm a little bit nervous about what he might be thinking.

Mother is as mad as a snake, and there are no infection markers at all. Bummer. Today, to my horror, she demanded to know "who's that awful man?" when the man in question was the very helpful technician from our medical equipment suppliers who was going to a great deal of trouble to sort out some glitches for us - and he was standing approximately three feet in front of her at the time. Fortunately he's very familiar with his customer base and is used to not taking things to heart; but it's so out of character for her to be so rude. I didn't know where to look.

She's taken against daffodils, too. Bit of a problem in rural England in early March, because in a week or so there will be hordes of them whichever way you turn. Besides, what have the daffodils done?

And the evening HHA turned up half an hour early. For goodness' sake. The whole point of changing to an evening visit is so's they can give mother her supper, and how's that going to work if they turn up early without warning? I'm not going to start leaving it to keep warm on the off chance that that might happen. Not the HHA's fault, but then later on she had to come and find me because mother had asked her where I was three times running and refused to hear the answer - this aide is new, so again it's not her fault that she doesn't know what answers mother will accept; but the fact is that this "help" is of very limited help right now.

And I have found out why the NHS is so broke. It's because they don't trust us to unzip a mattress cover and put it in the washing machine without doing something stupid and dangerous, so they instruct the OT's only to offer replacement mattresses for the air bed, they're not allowed to order spare covers full stop. The air mattress is £500, the cover is £100, as I found out when I rang the manufacturers direct because I couldn't believe this bureaucratic nonsense, and was told I wasn't allowed to buy a spare cover because they only supply official health professionals - I would have to request one from the OTs… groan, here we go round the mulberry bush....

Problem is, a hot wash takes an hour and a half, a cool tumble dry takes a further hour, then you've got to get the wretched thing zipped back on straight, and the bed remade, and mother is only supposed to sit up out of bed for an hour max at a time. Which is why she is now completely zonked, albeit very grateful to be back in her nice comfy (and now fragrant) bed. She spent the whole afternoon in her riser-recliner with me darting in and out of the room like a little firefly panicking that she might have listed too heavily to the right and toppled out of it.

Done whining! Now yawning, long day.

JeanettB, please don't cancel your respite. Read the article about FOG, Fear, Obligation, Guilt. You need time away, I learned this the hard way (depression, sadness) will hit you without warning. Take care of yourself!!

I am bummed out today from the constant gloomy weather and asking myself what the heck happened to life? I will never take a free moment for granted again, ever!
Mom seems kind of crabby too today. At least this day is almost done...maybe if I get Mom her dinner and quickly wash my hair I will feel better....I am finding little things are so important right now...the entire World has shrunken to my home, the grocery, and drug store. Thank God for the library, though I am finding I get books out and then either don't have time to read or just have no more interest.

fk daffodils , verily !!
lol

After spending 1/2 of yesterday and all morning I think I have all the phone calls made.. even had to call courthouse and get a copy of thier marriage lic for the SS visit in April. Unbelievably every call went very well.. now to wait for various forms and such to arrive in the mail, and be filled out and returned. I am sure things will pop up.. but Mom is not as stressed now. Nor am I. Didn;t get to pick dad up today, so I guess they will call tomorrow. we are going to have a memorial service in his hometown in the spring/early summer. And I can't believe they are calling for 8 inches of snow AGAIN .
Jeanette, take some respite time. If you don;t go away you can still visit, but you can also reclaim some of "you". Mom is planning to go visit Aunt in a few weeks.. it will be about the third time in 2 years hubs and I will have alone time.. and I surely plan to spend some of it in my PJs in front of crap TV !

Eating homemade (low carb, sugar free) blueberry snow cream. No whines for me at the moment. :-)

Susan, you should be whining about "SNOW" cream.

daffodils are everywhere here.... verily. Tree's are pink n yellow with blooms. Oregon skipped winter and sent it apparently everywhere else. Sorry ;)