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Twin I am shocked.... me? snarky? as if!!!! Why not very sweetly tell them (sweet is always best when you are about to deliver a killer blow I find) something like this.

Why thank you I do try my best always have done always will. I will pass on your comments to xyz next time I see her but that is rarely - she only visits twice a year so not expecting her anytime soon.

Then expound on how much she does while she is there.

I love seeing her and would like to see her more but she just pops in long enough for me to get some things I left unattended done - it's not easy when you are care-giving 24/7 as I know you appreciate. Just now and then I HAVE to go to physically see people. But truly thank you for understanding how much I (note I not we) do - it means a lot to me.

Then excuse yourself and walk away - time to unclench your fists or you will have nail marks in your palms for ages!!!!
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I have been trying in my short, spare moments these last days to clean closets, drawers, and my cluttered mind! I end up staring at the things, thinking that I may need them someday, and close the drawer. Maybe I should not do this job right now as I really can't concentrate for long. Maybe one drawer or closet at a time! I have so much going on in my life right now sometimes I try to do too much.

Jeanette, I agree with CountryMouse that your brother most likely has copies of those photos.
Sharadale, I didn't know about the Solara dashboards as I traded mine in a few years ago. The weather up here really limited my use of the convertable top too, and when it did get nice there was all the road construction dust! Someday I dream of moving to a better weather place! I am glad to hear your Mom is doing better!
Hope, I am so glad you are enjoying that respite!!! It gives me energy just hearing about it!! Have fun...you deserve it !!!
I hope everyone else will have a good day and wish strength for everyone in all that we may encounter.
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Sheradale, so glad to hear your Mom is doing better! I hate car trouble, always inconvenient and pricy!
Katie, I am thinking about you sweetie!
Jude, you too!
LOVE to you all, it's 4:29am, and I can't sleep! Grr, really a problem for me with my fibromyalgia, headed to the kitchen for a Cuppa now, then to watch some mindless TV, that will help me nod off,
Good day everybody!
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Just have to whine this morning as it made me sick to my stomach about it all night. Took mom from the care home last week to go to ER and they convinced us that it is time for mom to end this 7 year stretch of chemo and go on hospice, which we've known but mom wanted to keep fighting. But… she will not make it as the pain mgmt meds are going to have to be so high she won't be able to eat or drink. She was only being given 1mg of didulad and they had to reduce it to .2 but she still can't eat or drink. Or doesnt want to. Giving her days. Anyway… bottom line the care home said they need 30 days notice and will be keeping the $2500 deposit. What ???!!! The contract says if I move her elsewhere, but this was not a choice that we had any control. Anyway. Angry, tired, confused, and just plain overwhelmed from all of this so quickly and needed to vent. On the good note, Yesterday was mom's 87th birthday. She did manage a bite of her ice cream cake which she had requested last week before ER visit.
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???!!!

So… Is the care home prepared to accept her back AND provide adequate support for hospice? Otherwise, you're not moving her: they're constructively evicting her.

Good for you for finding the ray of sunshine in all this. Even a small thing can make an important memory. Hugs to you, keep posting.
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BurnedOutAnnie, I am so sorry to hear that you are going through this! How mercenary of the hospital to inflict the added stress of a $2500 deposit, just so callous and cruel.

If your mom does not want to eat or drink, she may be preparing herself to die. As much as part of her wants to fight the cancer and live, her body is worn out. The only silver lining behind this black cloud is that she will finally be at peace after so many years of suffering.

My thoughts and prayers are with you during this most painful and difficult time.
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I feel like the shi**iest child ever. My mom is 88 and lives alone by choice in Florida. Her health is pretty good for her age although you'd never know it listening to her. She lived in a retirement home where we live for a year and hated it. In a nutshell, she's driving my crazy. She is here now visiting us, and all she does is bitch, moan, criticize and complain about everything. She came up so she could go with us to visit cousins and her brother in SC. Her brother is 92 and very, very unwell so it is probably the last time she'd get to see him so I couldn't say no. She drove everybody nuts. I feel guilty going on like this, but older she gets, the more difficult she becomes. I try to be patient and understanding but its a challenge. Its my perception that she does OK in her current living situation. I need to talk to her primary case physician but don't know if I'll be allowed to. I work FT and my husband's job may be gone in a year or less so I don't have the freedom to go down there very often. I know this is probably the last trip she'll make up here, because it is very hard for her. Thanks for listening. I know many of y'all have it really bad so I appreciate it.
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If you are your mom's medical POA, you should not have any problems.
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Ups and downs....every day brings something new, it seems.

Yesterday, Mom surprised me by being up, cheerful, happy and chatty. She'd had a good night's sleep - she smiled at everyone and said "good morning!" as she passed people in the hall, she joked with the PT people, and ate well. This morning - completely different story. She apparently had a bad night and didn't sleep well and was almost completely non-communicative this morning, but when she did talk, she just kept saying, "I want to lay down. I need to lay down soon. No, I don't want to do therapy, I want to lay down." (sigh) I wish they could get that regulated, but after about 35 years of a screwed-up sleep cycle, I'm not sure there's much they can do, short of drugging her out of her mind to make her sleep at night. The Zoloft is helping, but apparently not enough.

Had to talk to the charge nurse this morning - a CNA from another floor was helping out last night when I arrived to visit Mom, and apparently being from another floor means she doesn't know how to operate a portable oxygen tank. She put the canula on Mom's face, turned the flow gauge on (after asking me how many liters she was on - duh, look at the room concentrator - she's on 3), and asked Mom if she was getting enough air. Mom looked confused and said, "I guess so...." - so the CNA says, "Well I'll just turn it up on SIX...." I stopped her right away and said, "NO, you don't put it on six! She's on THREE!" - so the CNA says, "Well, I guess she's ok" and walks out the door. I pulled the canula off Mom's face and put it to my cheek - no air flow at all. Checked the tank - it wasn't even turned on. So putting it on 3 or 6 was not the issue - she didn't even bother to check to see if it was on! Drives me nuts. There are a few very good CNAs there, but quite often they are very young girls who are not there to care for people - they are just there to get a paycheck, and it shows. GRRRR.
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Susan I feel your pain hun - It does drive me nuts when I have to explain that I am coming in to see Mum at 11 tomorrow is that OK and BTW can she have a shower tomorrow gets translated to your daughter is coming in to give you a shower???WTF???? They said they don't have time ....well she has been in 10 days and as yet I am the only one who has given her a thorough wash and she has had no shower - my point? either get enough staff or close the damned ward
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Jude, that's just terrible! Isn't being clean a basic human right while in hospital? Especially in hospital where infections run rampant? And the wages they are paid, to do the utmost minimum of care, it is all so unfair that she has been treated this way! God, if it hadn't been for you, who knows what would have happened to her thus far, UTI, Sepsis? I dont understand it!
SUSAN, God Love, I'm so sorry nothing is easy for you or your sweet Mom. Tell me you reported that CNA, as she needs to be reprimanded at the least, and to be retrained at minimum. Unfortunately her sleep patterns will dictate how she feels on any given day, just like the rest of us, but to medicate her to a comfortable level of sleep, could well be fatal to one so frail, it's just such a fine line.
My thoughts are with you both caring so lovingly for your Mums!
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BurnedoutAnnie, You are in my thoughts and prayers. I hope that things get better for you.

Susan, I would let the administrator know what happened. Bad nurses aides in a NH my Mom went to for rehab over a year ago are what caused my Mom to get the pressure wound in her back that just won't heal.
Jude, I agree they need more staff! What about patients that don't have a family member to come in and give them a wash? This should be part of the staff's duty.
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Hope, dear girl, WHAT THE HECK ARE YOU DOING CLEANING CUPBOARDS AND DRAWERS FOR YOU SILLY BILLY? NOW get out there and have some Fun, ya you remember what that was, right? But really I do understand that you feel a little lost without her, and the cleaning out may help to settle your mind and help you to feel productive, then go ahead. You have my permission, lol! I can't wait to hear about your makeover, and hope it feels luxurious! Toodles
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Guestshop, you are so right. There truly is nothing that will make him happy since mom died. I have scheduled a chat with the social worker this afternoon to get suggestions on how we might make this easier for him to deal with. But it IS happening, whether he likes it or not.

Besides, I feel we are about to repeat family history. His older sister went from okay living alone with a little help to severe advanced dementia in 6 months. At the same age he is now. I can track the decline in his mental function week by week, deja vu all over again.....
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HHandbasket, your mom has made her choices. It's not your job to "fix" them. You need to take care of yourself and your husband.

When the time comes that you feel your mom may not be okay, Florida has a network of 15 state-sponsored "memory clinics" that are a good resource for getting evaluation & services. If she's not agreeable, which sounds like it will be the case, call the county sheriff's non-emergency line and ask to speak to an officer on their senior protection detail. My neighbor is such a deputy, that's how I know about this. She has taken many seniors to the memory clinic for evaluation--some voluntarily, some by getting a court order. She has said that she often can get cooperation from people who refuse the same to family, because of the authority that comes with the uniform. So don't think that going down and doing it yourself is necessarily better.....
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I reported the CNA to the charge nurse, who was VERY unhappy about what happened. She was making notes furiously as I was talking and wanted to know specifically which CNA it was.

Just learned why mom is "down" today. Her kidneys are trying to fail, and her CO2 level was way too high. That accounts for the fatigue and confusion this morning. First step is to remove the diuretics (she's on 2) and see if her levels normalize, and to monitor her weight closely to see if she builds up fluid in her lungs/heart without the diuretics on board. Then - and get this - they tell me she was actually in renal failure when she came into the nursing home - a fact that somehow, no one told me. WTH!?!? So frustrated.

So we take another ride on the roller coaster. Not sure how this week will play out - if Mom's levels don't normalize in 48-72 hours, they'll be sending her to the hospital. They have to wait for all the diuretics to be out of her system for 24 hours to see if the kidney levels will normalize on their own, or if she's headed for dialysis. :-( This is like a repeat of the months leading to my Dad's passing all over again.
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Susan your whole experience with your Mom sounds so much like mine with my Mom including the nurses not recognizing signs they should etc.

When I hear all these stories from you and Jude etc. it just makes me that more cautious. I have an appt. on Friday with my doctor. I want a full bloodwork done cause I've been feeling run down. But I find its hard to get doctors to send you for tests these days cause they have to feel its necessary and if they don't your out of luck it seems.

Jude, any ideas on how I can persuade my doctor. You are good with words. Maybe I should get a note from you. :)
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Jude should go into politics as she is getting a good start as a speech writer! Thanks for your advice.
Bought dad some garden flowers for his room this morning. I really have to start talking slower as he was in a confused state. Less talk more smiling......
I have noticed a deterioration in his speech. He doesn't talk a lot to begin with I think he doesn't want to embarrass himself. He was looking out his window and wanted me to see something but couldn't think of the words which he does admit to at times or maybe hoping I was a mind reader. Sometimes he does talk in longer sentences but usually short phrases. I usually talk with him so he can give me yes or no answers. Lots of times though I will ask him a question where he has to choose an answer and his usual response is it doesn't matter.
I ask him what he had for breakfast I know the menu pretty well he doesn't know what he ate (for any meal) I suggest something like cereal then he says that is what he had. Was bummed out most of today after seeing him this morning.
Not as bad as what some of you all are dealing with but in the end a decline in our parents is hard to accept.
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57twin don't ever feel like you have to apologize cause you think what you are going through isn't as bad as someone else on here. If it upsets you and it obviously does then it matters.

I know what its like and everyone else on here does too. Its a tough go.

((((hugs))) to you.
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Well, I did get my hair done in a relaxing manner, and I did get my AC fixed on my truck. That is where it began and ended. Mama is on her way home as we speak. As it turns out, she was not being fed. I have so many raw emotions right now and am more wore out than when all this began. This is why I never do respite. I do not trust other people with Mama's care...and for good reason...Let's see....She has had 7 meal periods not counting tonight...Normally she would have drank at least 14 ensures..usually bumped up with a fruit, some juice, peanut butter, etc...she had only used FOUR of them and one of those was when I fed her Monday night. After the smoke cleared and the dust settled, I let them know I wanted Mama home, NOW....There is no rest for me in worrying that she is not even being fed. Of course, once you come down on them they are all, "what can we do to make it right" "give us another chance" they were blaming the hospice team, hospice is blaming them. I find BOTH of them to be responsible...I entrusted her care to them and I flat out told them I was exhausted from dealing with all of them and this is exactly why I don't entrust Mama to anyone because I can't count on anyone to do their da*n job....

So anywho...no more respite for me. I'll have to be happy with the hair appointment, which turned out great..the rest of today I spent waiting on my truck to be fixed..again...but finally got it nice and cold and no extra charge to me..yay for that. I missed Mama anyway...there are reasons this happened...Mama drank those three ensures fast and furious..she was so hungry/ thirsty.. I asked her if she would just come home with me...I was lonely..she said "yes, I' ll do that"..... so back to the real world...
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You could tell by the looks on their faces they knew they hadn't done their da*n job....
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Thanks stacey...I did at least get to enjoy the makeover...and it is a makeover...even waxed my brows and lip...haha....I had really let myself go...My hair is kind of in shock right now, but the cut is really cute and I love the color...so that went well. And I was very happy that I got my AC nice and cold at long last. There was some part that was worn out and they replaced all that at no charge because I had been having to deal with it so much...so that was a good thing too. Another good thing..great thing..will be having Mama home.....I was surely relieved when she smiled at me as I came in and drank her ensure the way she normally does...I'm pretty sure they didn't try very hard...I told the head nurse, I KNOW that Mama is not the only person yall have ever had who can only drink ensure for nourishment. I am so disappointed in this place because the last time we were here yall did an excellent job with her shakes and fruits . She told me..why didn't you say something? I informed her in a not too pleasant tone by now..I did say something to yall, to our nurse, to our hospice provider to the lady at the desk on Monday night..I said...how many times am I supposed to have to tell you? She told me, if you want to just let us try again we will see if we can get it right. I told her NO, you don't get a second chance at Mama..She is frail and it doesn't take much to send her health spiraling...I made dang sure they knew they had ruined my respite ....I made sure our hospice provider knew it too....
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Sad thing is, tomorrow, since I had finally gotten my truck fixed, I was going to plan my all day adventure...so plan B...I will plan another adventure..right here within the confines of these four walls...at least Mama will be here with me..
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Hope, how awful! It's painful to think of her lying there hungry, thirsty and lonely. Now you know definitively what respite care can be like. Everyone's experiences are different but what counts is yours and your mother's experience! You are a saint!
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Oh Hope I'm so sorry. I was imagining you having a nice break. (really imagining since I've never met you)

All this incompetence out there in the health care industry is really worrisome. It seems no one is getting proper healthcare.

Ah well.
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omG hope! omG! Now that I am learning more of how other's are taking care of business for their elders (the person I am caring for is under 65), I just now understand the secret hopes of many who are caregiving. And would that be, if our parents could have had better care or come home? Even when we ourselves cannot take care of them, (for so many good reasons) don't we wish good care for them?
The reason I am so emotional about your post is our neighbor needs more care and may be moving to a place that is not well thought out for his health. It can almost be predicted that within two months they will put him away in a NH.
You are right Hope, you are right to be the one caregiving.
No one understands why I don't leave (the person) without supervision, and I am not going to explain. It all seems so difficult, but you, Hope, are a good example !
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Hope, you have reinforced my intention to care for mom at home until the end. As impatient and contrary as I am with her, I don't want to abandon her, and I don't want to put her through that trauma. It was bad enough seeing dad go through it, but he was lucky in the fact that the staff were really good. However, I think part of that was our family visited him often and were always in communication with the nurses and we had family meetings to discuss his progress/issues. We even got him off most of the drugs he was on; one in particular made him a zombie.

I feel so guilty about all the things I do wrong, but I guess deep down, I do love that cantankerous, controlling and negative mother of mine (lol).
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There are others on AC too, who just have what it takes and others who are trying really hard to protect their loved ones.
You should all be named on the newer thread:
AND THE CAREGIVER OF THE DAY IS....started by Gladimhere.
Susan, Hope, Jude, and others.
Does anyone remember 'queen for a day' program on T.V., you were chosen, given a crown, a robe, money, gifts, and recognition? Early 1960's, I could be wrong.
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I do remember that show...now I am feeling old for sure..

I am realizing I may be a bad influence on encouraging others to not take respite...And to the contrary I don't mean to do that. I think respite is essential..but for me, and this week, mine is O V E R. No way was I going to leave her in a place where she has had a total of !,400 calories over the course of the past 2 1/2 days....I try to keep her caloric count around that for a day..

When I called the place, I told them who I was and that I understood Mama was not eating. The nurse said, let me check. She came back shortly and said..nope, not eating much. No explanation, no plan of action, just very cold and nope, not eating much. I said, have you even tried. She said, I'm sure we have...By then I was fuming. I flew home and whipped up two ensures with some chocolate in them and headed that way. On the way I called our hospice manager and she was very terse as well...all she said was...well, do you want to bring her home then? I don't know if she thought I would say oh no....but I said you dang right I want her home...and then I told her..yall have been on me for over three months to take respite, take respite, and this is exactly the reason I don't do it....because I can't trust anyone else to take care of her...

She said, did she tell them she was hungry? I told her, are you kidding me? You know Mama has alzheimers she can't tell them anything...I told her, if you ask her is she hungry she will say, no..when she means yes...I said you have to offer it anyway..and she is not going to drink hot ensure period..who else would?? I reminded her again that last time they blended fruits, syrups, peanut butter, etc. in them ffor added calories plus a variety in flavor and I did not understand why they were not doing it this time..she said. huh..I don't know..

Well, you know, I do know..they did n't do it because YALL didn't tell them they needed to do it..And when she wasn't eating the home should have been calling yall or me so I could have gotten on it...It is too late now..thanks for nothing... I am still so angry.

I am just thankful she is home..she looks happy...I know she drank THREE ensures within ten mintues of my getting there...they just were not paying any attention to her...

I guess I got sidetracked again..What i mean to say is...while it is their responsibillty to get the orders right WE have to be their advocates. Mama is no stronger than a newborn puppy these days. She is at the total mercy of all these yahoos...I will figure out how to work around this and I will grab my naps where and when I can. I will tell my brother I have got to have a day off and tell him prepare to take a day of vacation..because he is honestly the ONLY one I can trust to make sure she eats...

I think I am going to have a cup of coffee and try to settle down......I just am so thankful she is home now...The weird thing is I have been having the oddest dreams about Mama that were waking me up in the middle of the night and I would wake up and think...Mama needs me...I know Mama needs me...and turns out..she did....
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Hope your respite experience sounds as successful as mine. I talk to others who sing the praises of their loved ones nursing homes, are they in denial or just lucky? I was seriously considering whether my Mom would be better off in a long term care home, but even a week is was too long to have to endure sub standard care, how could I entrust them to care for the long term?
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