This seems to be a question that is not asked enough or we think what we are feeling is not as important as what our loved one is going through. This job we have taken on is a tough one and there are days when I think my "stress rope" cannot be pulled any tighter. Then there are other times that make those bad days just a memory. Do you feel like banging your head against a wall one day? And then the next day your loved one is attentive and loving and comprehends whatever you say? There are some who keep those feelings bottled up within themselves; others take the time for outside resources and others who look at sites such as this for some understanding. I do better when I have someone else to bounce my feelings off of. Let's face it....we aren't superhuman and besides ourselves and perhaps a family to take care of we now have taken on the responsibility of another human who is incapable of taking care of themselves. Do you breeze through the care giving without a problem? If so, I would like to know how you do it, maybe you can offer some new ideas; do you have feelings of frustration and need to talk about those? Come and talk and know that you can speak freely and without judgement and without finger pointing.
I am caring for my mother-in-law and have been for about 1 1/2 years. She has moderate dementia and incontinence. Other than that she is very healthy. Sometimes that short amount of time feels like 10 years and I wonder how long I will be able to do this job. I get so very tired of hearing the same thing day in and day out, but I have to remind myself that to her, each time she sees me, she is offering new information. At times I have no problems communicating with her, but it seems like more and more she cannot retain a thought longer than 5 minutes. We have had to make signs for her so she will know what she can and cannot do. So far it's working, but for how long? Maybe I will have to end up making her a "Book of Do Nots". She is on memory drugs, which don't seem to make a difference. So why do I continue to dole them out to her? I guess I'm afraid of what might happen or how she might act without them. I might have to rent a boat or buy a helmet! Sometimes I see something in her that leads me to believe that she could get aggressive and what would be my reaction to that? At the end of each and every day, after she is tucked into bed, I breathe such a sigh of relief. The "inner beast" is quiet at last, or at least for a few hours.
Pull up a chair and visit........I would like to know how you are coping everyday..be it good or with handfuls of stress.
Earlier this week I had really bad flu. Part of it was a terrible sore throat. My mother was telling me something. I couldn't shout with my sore throat. But she kept telling me to speak up.
Then tonight, the house phone rang in the kitchen. We were in the den. So the ringtone doesn't have any obstructions blocking it. I could hear the phone clearly, but my mother didn't hear it all.
She has told me that her hearing aids have popped out on occasion.
In addition to her hearing. She will make something in the kitchen, then go back upstairs to her bedroom to watch tv. Which results in her forgetting about the food/drink. Either for several hours, or the entire night.
Mom's hearing may need another visit to the ear Dr. Is she remembering to change the batteries. That can make all the difference!
As for my mother's hearing aid, getting the battery replaced, is useless. She keeps losing the hearing aids. Either they fall out of her ears, or she puts them somewhere and forgets where she puts it.
I have short-term memory problems due to brain surgery I needed when I was a baby n' infant.
My short-term memory has definitely improved. While my mother's has degraded.
I think they should go back to the old style where the patient wore head phones and had a battery pack clipped to their clothes. Not pretty but difficult to loose and the wearer would at least be able to hear when needed.
TiredReader, congrats on the sweepstakes and the job. I always viewed my job as my sanity from caregiving. Both are stressful but at least I get paid and get compliments from my job compared to caregiving.
Chris, my dad just absolutely refuses to get a hearing aid. When we raise our voice so he can hear, he gets mad and tells us that there's no need to yell at him. Disrespectful child! {darn if you do, darn if you don't}.
Cwillie, your Troll avatar spray was so funny... after seeing A poster's one track mind all over this website. 👍
Been hunkering down fighting the blues. Monday Blues are the worst. Actually had to pray {not much into praying} this morning to help me get out of bed. Was miserable until I finally bought a bottle of Pepsi {$1.50} after lunch. That just hit the right spot.
Hope everyone is coping as well as possible. I agree about Mondays. It's cloudy and depressing where I am. Strong thunderstorms are supposed to come in later today.
I've been battling severe body aches and a fever the past few days. Still getting things done but it's not fun. A friend offered to take me to Costco today but I had to decline. That's so not like me.
Yesterday was really rough with my mom. She is falling apart before my eyes but stills insists on going out for lunch. Hubs and I go along with it, but it is exhausting. Her arm function is so poor, like a rag doll but inflexible, it is very difficult to get her heavy winter coat on. (when it's 60 degrees!)
Loading her in and out of the vehicle is becoming next to impossible. She is totally non weight bearing. Hubby lifts her up then I lift under her bottom and get her legs in the Jeep. Unfortunately, she puts her hand on the back of my head for support when I'm lifting her. No wonder my neck hurts. That has to stop. Multiply that three times for the places we visited and you get the picture.
Dining out is no longer an enjoyable experience with her. We have the coat issues and then agonizing over the menu. I always look online before we go anywhere to make sure there are acceptable choices. I try to steer her towards those items. The kicker is she doesn't eat anyway. I carefully cut up her food per her request and then she moves it around on the plate. I feel bad for her, I really do, because her arms are so weak and coordination is so bad it's hard for her to lift a fork. It's like a sad charade we keep playing. She with it enough mentally that she would be mortified if I tried to feed her.
I realize going out to lunch is important for her. It's become more about the social construct and feeling part of the world than about the food, obviously. Seeing her this way often brings me to tears when I get back home.
She also has a new request. She wants a bib as when she falls asleep in her recliner, she drools all over her shirt and chair. Off we go to Target as she thought they'd have a baby bib that would work. Oh mama! We humored her, but oh my gosh, they are for tiny babies! It was painful to let her examine each and every of their offerings, all totally unsuitable.
Now I'm on an online search for adult bibs. There are so many. I think the terry cloth ones with a waterproof liner would be the best. It has to have velcro as she cannot manage snaps. Anyone have any experience with these products? It's frustrating as anything I find for her is never 'right'. With her declining capability I don't know what to do. I'll put in a call to hospice as well and see if they have any recommendations.
bookluvr-That is sort of how I feel. By my mother losing hearing aids. It is almost like your dad refusing to use one.
AL dropped the ball. Hospice nurse called me at noon to tell me what was going on when she got there. Mom was in a lot of pain (duh!) and she got it changed.
Also said mom has a UTI. Last time the antibiotics made her nauseous and unable to eat for a week. They are going to try a different type this time around in hopes it won't cause gut problems.
She was sooo wacky on the phone, angry and disoriented. I can't imagine what she'll be like tomorrow when I visit. Poor mom. This is torment.
Catheter. Be careful of it when transferring her. The home care nurse transferred dad to the wheelchair. Then left. My dad can't sit too long on it before he becomes uncomfortable. So teenage niece and her boyfriend - both with NO experience in transferring a bedridden person from wheelchair to bed - transferred him. I received a frantic call at work. Grandpa is bleeding and it's very bloody and he refuses to go to the hospital. I called the attending nurse, angrily told him what happened. My niece and the boyfriend accidentally did something to the catheter during transferring. By the way, my dad, too, can no longer pee. It gets all clogged up inside and the pain is bad.
If the urine is at all thick naturally a UTI should be suspected but the catheter should be irrigated a couple of times a day to flush out the gunk. Changing a catheter is in itself a minor procedure and should be done on a regular basis per Dr's orders. As a nurse after flushing failed that would be the first thing I did.
As far as calling you is concerned if those are your instructions they should be followed however anything like that should be immediately reported to the hospice nurse if the staff can't solve the problem at once. There is a solution of ascetic acid (vinegar) that the pharmacy can make up to flush catheters which helps keep them clear.
WARNING DON'T REACH FOR THE VIGEGAR BOTTLE IT HAS TO BE MADE UP IN THE PROPER STRENGTH STERILE SOLUTION.
Book the ascetic acid solution may help keep Dad's catheter running smoothly too. I know you hate dealing with anything below the belt but it's really no more than draining the bag which I assume you do.
You just disconect the bag and squirt a 20ml syring full of liquid into the catheter and reatach the bag. You don't have to look at or touch any of his "stuff".
You are both angels! I mean that to the depths of my heart. ((Hugs))
So much good advice. This is all so new to me. This urinary stuff.
Mom is okay for now. No more pain, thank God and lots of good people! I am grateful for all of you. It means a lot to me.
Mom's UTI was worse than hospice knew. Pus was blocking her catheter line. Thankfully it is flowing around the catheter into her Always underwear. Not quite enough for the chair pads, etc. But they are keeping up on it.
24 hours tomorrow on antibiotics. Mom and I met with our dear hospice nurse and hopefully the catheter will work tomorrow morning.
I can't say enough about how much I love Elizabeth, our hospice nurse. It's allowed me to step away from day to day care. I admit I didn't know what I was doing. It was scary for a non medical me. I hate that stuff.
Book, I love you. Do what you need to do. You know I will always support you.
This is so frustrating. Anyone had a similar experience?
My mom drank four glasses of water prior to her bladder ultrasound. During the first ultrasound, with a supposedly full bladder an hour later, she measured at 93 milliliters.
After a two person transfer to use the toilet (mom is 76 pounds now!) that took 20 minutes we didn't have good results.
She was 171 milliliters post void. Gah! A catheter just won't work. Mom said the nurse said something about surgery to help. I wish they wouldn't talk to her about the options without me there. Mom was pretty freaked out.
A supbra (?) catheter was what I think she talked to her about. I am confused.
They have to be able to get the urine out, and a suprapubic cath is safer than urethra for an elder person who needs help monitoring their urine output, infections, catheter blockages and such, in my non-med-pro opinion. You can monitor it better and there's less chance of causing infection because the abdomen wall has fewer bacteria than the nether region.
I hope your mom can be reassured soon that this isn't a big deal if they want to put in a sp cath. Retaining urine is bad, sp cath is not so bad... given the options. Thinking of you and your mom, windy. (((hugs)))
Have a urologist appt. Wed. morning. Hospice approved amazingly. Some urine is being passed though not through catheter. Now her bowels are loose.
I was finally approved to access her medical records through her current visiting physician. Cachexia was long something I suspected and there it is on their hospice DX. Oh boy! Hard to see it, though I knew it from my observations as a non-med person through talks with my good RN friend.
I hate this. It's hard to see your parent go down, no matter the age. After years of this stuff, one thinks they are prepared. I honestly don't know how I will feel. It's been a crazy ride and it's not over yet.
Got a good break tonight with our son who is home over spring break from college. It is so fun to be with him and laugh. I needed that!
She lost 3.2 more pounds in a month, now down to 76. Must be burning liquid calories for fuel. *sigh*
Hang in there everyone. It's said old age isn't for sissies. It's hard on the caregivers too.
It sounds as though Mom's kidneys have completely shut down which means that other vital systems will follow leading to her passing.
Her large weight loss means she has been living off whatever small reserves she has and possibly pure willpower.
Do you have hospice?
Now is the time to tell her the last things you wish her to know and tell her that it is alright for her to go and that you will be sad but OK. It sounds as though she is very close to the end. Blessings
Seriously, it had to be several people here on agingcare that told me mom was very close to the end. Mom had stopped peeing, too. So many signs that I didn't see or acknowledged.
We all told mom that it's okay to go. I whispered to her that she can go now. That dad cannot hurt me anymore because he's bedridden. She doesn't need to protect me anymore, etc..
I'm glad that your son came home to visit. It helps balance you and strengthens you. Take care.
When the time comes, I agree with Book's recommendation - make sure you tell Mom it's ok to go. Tell her you'll be ok and you know she'll be watching out for you, but that you'll be ok and it's ok for her to go. The staff will be able to tell you when that time is coming - they know the signs better than we do.
Big hugs to you...we all know what you're going through. Please know we're here for you if you need to vent.
She survived the urologist today. I understand mistakes can happen (I make enough myself!), but I'm a little miffed. Mom's catheter missed the bladder and was vaginally placed by hospice. Grrrr. It's been that way for days. Thankfully she was able to pass enough urine on her own to not be in a lot of pain. The bag filled up really quickly though after proper placement.
The urologist suggested we secure an appointment with him a month from now. We are to ask hospice to replace the catheter the day before. If it works, cancel the appointment. If not, back she goes to see him. Smart guy as it's hard to get in to see him last minute. We only got in today because someone had cancelled.
With the shape she's in, it is hard to look that far ahead. She is certainly one stubborn and determined woman. She's quit saying she wants to die quite so often. When she said it with every visit, I told her I could understand with the condition she's in and being so miserable. I more or less gave her permission a few times. Her response to me is always, "But I'm not dying!". **sigh**
My brother had a long talk with her and she insisted she is not afraid to die. Who knows what goes on in her mind. It's sad.
I have the full blown flu. The first time I tried to take nap after work, I couldn't sleep with dad constantly calling sis or my name every few minutes. I kept jerking awake. I've learned that if I turn on the radio, even when I take a nap, when dad calls out, my conscious mind jerks awake but hears the soothing music despite dad's voice. I had a better nap this way.
Yesterday was really bad. Body aches, severe headaches, etc... even with the fever. I was ultra miserable. I left work early. I asked nephew if he can still stay and watch grandpa. I'm going into my bedroom to sleep. Food is bland. Water makes me want to throw up. I was dehydrating but I just couldn't get myself to eat/drink.
And d*rn it, every single time I have to blow my nose, I got this very excruciating headache. I've had the flu before. I never ever had it where I blew my nose and it caused this sudden severe headache pain. And yes, I blow my nose without blocking the other nostril. Last night, at 10pm, I blew my nose, severe headache pain, and ... my vision became wavy. Ohhhh. that's Not Good!!! Yikes! Something is wrong inside my head. I decided hot soup (cup-o-noodles) will help release my head pressure. I dug up the green tea bag to drink hot green tea after the noodle. Well, since then, whenever I blew my nose, no more sudden excruciating pain. I will make green tea later on today. I'm just soooo glad that I did Not react to this brand of green tea like I did with the other brand, which I broke out with rashes along the lips. Today, I'm starting to cough.. a lot ..... sigh... time to do the laundry, feed dad lunch, and maybe sneak a nap in.