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.
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.
This is so frustrating. Anyone had a similar experience?
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.
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".
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.
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.
bookluvr-That is sort of how I feel. By my mother losing hearing aids. It is almost like your dad refusing to use one.
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.
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.
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.
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.
Mom's hearing may need another visit to the ear Dr. Is she remembering to change the batteries. That can make all the difference!
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.
My brother watched grandma for a few hours today after work so I could prepare for the part time job. Grandma wouldn't let him take off her compression stockings or let him help her into bed. She didn't even ask him for a glass of water that she wanted. Grandma waited for my return because she wanted me to get her the water. That's normal so I ain't even mad. It just is. And I accept the reality.
I start work tomorrow! I've been calling it my vacation from the real work. I'm a little nervous to be honest. I haven't had that much contact with others for years. Been cooped up like on an ivisible leash. Not straying outside past a certain point so I can still hear her. Don't want to make a fool of myself. What casual banter do I say? All I can talk about is caregiving!!!
Also, my back pain is an ongoing issue, so I'm worried if it can physically handle the strain. Speaking of that... ^_^ I just tripped on a downspout and fell 1 hour ago and now the right side of my lower back is feeling strange. Joy.
I won a sweepstakes today which feels awesome. 2 round trip tickets on greyhound. The realization that I don't have any time to use them, money to spend at the destination or someone to go with is a bit of a downer. Who know what will happen in the future. Knowing that I could potentially leave the state for free gives my fantasies some more mental clout.
All in all a mixed day. Mostly positive besides my insecurities.
Then, decades later, he went to their family doctor with gout and this particular doctor explained colchicine to him - right down to the chemistry of the thing - and there was a bit of a miracle: my dad, skipping round the kitchen, and saying how brilliant doctors were and that he felt like a spring lamb. Couldn't believe my eyes and ears.
Could you ask her doctor to have a grown-up conversation with your mother about pain management, and exactly how the drugs work, and how she owes it to herself to keep as active as possible? We children can beg and plead all we like, but in our parents' eyes what do we know? She might just listen to someone she respects, as long as s/he talks to her on the level and doesn't attempt to patronise her.
Folks that don't like taking meds are hard to convince otherwise
My mom has numerous compressed vertebrae and has broken her tailbone at least three times still balks at even taking a Tylenol
Can you try applying a heating pad for 10 minutes or so to give her a little relief ?
She's now incontinent both ways. Doctor thinks her spinal fractures affected the communication pathway to her bladder and bowels.
I'm with you. I would not choose pain. Bring on the meds! It's the last frontier of control for her. I'll let her choose as she sees fit. She's cognitively slipping and I know she's afraid of losing control through meds.
...distrust of medication... That's interesting to me. If I were in pain, and someone gave me something that made pain go away, I'd want it. Your mom sounds like a very strong and hardy lady.
AliBoBali, love typing your screen name, it's cute :). Mom's pain receptors aren't numb at all. That's my conundrum. She's in constant pain and wincing, yet refuses to increase the pain relief. Like I said, she's in charge of what she wants as far as the morphine. I respect that. She's always had a fear and distrust of medication. She prefers to tough it out. At some point her multiple bone fractures and the pain might cause her to change her mind. She seems in agony a lot of the time. I feel helpless.
She's got a ring cushion, has she? You know, the doughnut shaped ones?
Ibuprofen gel applied to the area might help a bit. It's a useful anti-inflammatory, and topical preparations don't cause the same bleeding problems as the tablets might. Oh - the pressure sore! Would it be possible to avoid it?
I'm jealous someone is bringing you falafel. I absolutely love falafel on pita with onions, tomatoes and tzatziki sauce. Sadly the nearest place that serves it is almost 35 miles away. :( A trip into the city might be in order this week. I've made them from the boxes of Near East mix but they are not the same.
We tried a new place for lunch today and my mom actually ate two medium-sized fried shrimp, one house made potato chip and a one inch square of ciabatta bread. The woman is calorie loading, I tell you. :(
She actually asked to go back to her AL early as she was in too much pain in her transport chair. That is a first. She insists her pressure sore on her tailbone is the problem. That is not so. I've seen it. The hospice nurse showed me the sore when she put salve on it. It is almost completely healed. She told mom that very emphatically. Mom dismisses the fact.
We're all on the same page that mom has a tailbone fracture, well, except for mom. Before she went on hospice, she had an xray that revealed multiple compression fractures to her spine due to severe osteoporosis. She is 79 pounds and her bones are extremely brittle.
My point of this long-winded story is mom is in pain now a great deal of the time. She is on the lowest dose of morphine possible. When I suggest that perhaps they can raise the dose a tiny bit, she flat out shuts me down. I realize she is in charge. It's just difficult to watch her wince in pain a good deal of the time knowing she hurts so much. Suggestions anyone?