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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!
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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.
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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.
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And they bit her on the mouth???
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If I remember right, the photo is of the wound inflicted on her when the person she cares for bit her.
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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.
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I don't guess I've seen that one..or if I did I didn't know what it was.....
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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?
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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!
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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......
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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 ;)
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Maybe she means that bleeding lower lip picture?
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I don't, but you sure have me curious.
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SusanA43, I think I know which screen name photo you are talking about. Makes me not want to read anything in that section :0
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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!!
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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.)
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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
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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?
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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!
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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...
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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....
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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.
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Katie....it really has made a difference for Mama...after I researched so much information on all kinds of stuff and knowing the probiotic capsules are to replace good bacteria...I thought why not at least try it...and it helped not only the diarrhea that often occurs during and after a round of antibiotics, but it also has made an amazing difference in the loose watery stool that her constant diet of ensure and juices causes....I can tell Mama is much more comfortable too...and mercy knows it is helpful for us as caregivers...I would think it would also help reduce at least to some extent , issues with skin breakdown...anything that can help, right??
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Hope, thanks for the information about the probiotic...it makes great sense because the antibiotics can take out the good bacteria too!!
I finally got a call from the home medical professionals and I am resting a little bit better that that will be underway. I still feel like everything is so precarious though, a scary rollercoaster ride with no safety bar!
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one kind of funny sidenote..our nurse ..after I had my last meltdown over the abcessed tooth issue, told me she didn't blame me one bit...she would feel the same way..I knew she was trying because I had heard her on the phone talking to the office...who was always forgetting this or that...anyway..the nurse told me..."Wow, who knew you had that much fire in you??" :)
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You know, it is sad, but looking back at issues that truly were things that needed attention, the bad tooth turned abcess, the UTI's that were causing delirium, all of it...they acted quickly once I threw a fit if I felt like they weren't moving on it...I know how busy they are, I know how hard they work...but for me...that is what we are on hospice for in the first place...and after seeing Mama lie here in pain while I heard all about the red tape, oops I forgot or I thought so and so called ..sorry....I had to have a literal melt down and let them know if they couldn't do it, I would be happy to find someone who would...and it got done...I am all Mama has and if people want to call me a "b" for being proactive..then they may call me one and get over themselves.... in all honesty I get along great with the HHA and the nurses..I know it's not them...it's the blessed red tape and just flat out person dropping the ball somewhere in the office....I have had to show my arse so many times in the past three and a half years it is ridiculous..but I am still here...and better than that..so is Mama.... :)
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Jeanette, yes, they will get the crease marks in their skin and at first it can look like a tear, but my words regarding a bedfast person are BARRIER CREAM......I slather that stuff on each time I change her and I'm telling you it is one of the best defenses to them getting tears or sores....

I agree with Cat...I would push them for a script....I know you are sick of me saying that, but our hospice ALWAYS handles the UTI issue....Mama does not even have a doctor outside of the hospice one anymore, but just like the other day before the snow...the nurse was able to get the script pushed through at my request..they did not even do a culture...because I know her behavior when she has one...and I promise I don't take giving antibiotics lightly..they can be detrimental to give them so much that they destroy all the good bacteria in the colon, etc. but I have also learned that mixing a probiotic in one of her ensure shakes each day counteracts the huge amount of loose poo during a course of antibiotics...also helps with that issue period....I buy the pharmacy brand and make sure I pick one that has the same formulation as the name brand ones...open the capsule and mix it in with their shake, some juice, whatever...the doctor confirmed it was fine to do this..it has helped immensely with the loose poo issue....
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oh shoot CM... I agree... Aaaaaaaaaaaaaarghhhhhh

We looked at moms bottom closely this afternoon.... looks more like crease marks than what my worst nightmare imagined. Whew.

Veronica, hospice does not treat UTI's. ... not here anyways. This is our first dealing with hospice and a UTI. Mom's 3rd in the past 2 plus years. She's had a strange cough today... like her saliva wasn't swallowing so well. Not gurgling.... just a cough like it went down the wrong pipe.

sigh

Mom is in bed snoring... which is my clue
Cm, this is properly scaring me.
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Feel like a full-blown whinge but too tired. How can someone who eats so little produce so much poo? Is a mystery.

Lovely Nephews 1 and 2 called their Granny today. Which was great except that for overhearing her say "I've been in bed for a few days, I expect you heard, but I'm better now." I wonder if nephews realise quite how nuts she is? LN1 said to me "but I wanted to know how you are…" but since I'd just spent five minutes describing the bedlam round here I thought that pretty much covered it. HHA definitely has flu; she called and I told her not to come in. Second HHA agency then called to ask could they come an hour and a half early? - that would be, no. I'd just got her back to bed and did not want her woken straight up again. I have been tearing around like a blue-arsed fly mopping up poo and changing sheets for a straight eighteen hours now and she hasn't even got diarrhoea. And if she was properly incontinent she wouldn't be able to hold on to urine in the faint hope that there will be, somehow, if she waits long enough, a fourth option better than commode, bed pan or weeing in her pad, and then she wouldn't pee an entire bucket load, overwhelm the pad and soak her fresh clean pyjamas and her carefully made bed. Aaaaaaaaaaarrrrrgggggggghhhhhh…!

I need to be careful of what I wish for, right?
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Jeanette hospice should treat UTIs it is part of comfort care. Sometimes at the very especially if the patient is having trouble swallowing they will ask if you want to treat but no they should be on the stick. they can start something immediately and change after the cultures come back. Happens all the time.
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