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.
I'm glad you are there for your sister, it is too bad she can't also be there for you, but at least her presence allows you to get out, even if it is just for work.
Dead cockroaches? I thankfully have never had to deal with them, but from what I know the only good roach is a dead roach, count it as a good omen!
On the other hand, living with us is bad for her mentally. You see, I not only have dad to worry about, I have to keep track of sis' mental welfare. Tonight, I heard her getting mad at someone in her room.
Is it a bad sign if I found 3 dead 'teenage' cockroaches: bathroom, scary bedroom and my bedroom? I haven't sprayed any of the rooms with roach spray. They're not old roaches. I don't know why they're dead.....
Dad became bedridden from stroke and refused rehab. I now had 2 bedridden parents, with mom on trache tube, 24/7 oxygen, stomach tube, vegetative state (bedridden over 13years) and needed constant suctioning of the trache almost every 10-15 minutes. I have a full time job and we are not independently wealthy. None of my 7 siblings (whom 6 of them earns much more than me because I needed a low paying job that allowed me to call in last minute for family emergencies) offered to help me. I was stuck with 2 bedridden parents, bills to pay, MY bills to pay, and I refused to give up my job.
I asked sis to come Monday-Friday to babysit the parents for measly $120/month . Older brother in Texas felt bad, and decided to pay me $100 month. I asked him if it's ok if I gave this to oldest sis. Now sis was getting $220 month. I eventually asked dad if he can pay sis $200 month. Sis was only a babysitter. She didn't do pampers. She would see me struggling with deadweight mom changing her pamper, and sis would just walk by without offering help.
I need oldest sis. I refuse, even now, to give up my job. One day, the stress of everything will kill me. I'm soooooo looking forward to it. I'm no longer seriously suicidal but the longing is still there.... please understand that I've had this longing since childhood. It's My Normal. The one time I became seriously suicidal, I came here for help. I sought counseling.....I just am so tired of this. It's been over 23 years. Yes. I Know what I can do to get out....
He keeps telling me all day to feed the 'lady'. I tried to go with the flow but he has suspicion in his eyes that I'm just 'humoring' him. He's cussing a lot now. Yelling a lot, too.
I'm not sure if he has UTI since he doesn't want to drink water. Or it's a new stage. I asked if my older brother can be his POA. He refused. Every time I try to tell myself I can do it, I get a pounding headache.
I'm watching Villalobos. He said, "Look at the cat." I looked and saw no cat. Then he asked,"Is that a cat?"
Thought: Every time I clean the kitchen sink, it just looks soooo nice. I wonder how sis can stay home all day, 24/7, and not mind that the sink is awful, turning black with mold, etc... We have poor lightings. I only see how truly the sink is disgusting during the weekends when I'm home in the daytime. The sunlight brightens the kitchen and I see how awful it looks. This morning I scrubbed the sink, threw sis' strewn used Ziploc bags in the left side of the sink, etc... I don't understand how difficult it is to throw away an empty container? She Has To Pass the Trash can in order to reach the sink!!!! Why dump her empty container in the sink, and leave it for days/weeks until it gets moldy? {{slap on my forehead}} oh yeah... She's waiting for me to throw it in the trashcan. Ugh!!! Like someone wise once told me, here on AC, sis is being passive-aggressive.
Okay. Almost 10pm. I've vented. Time to change his pamper, give him a drink, etc ...
I was driving home after work one night. I had the radio on to NPR Terry Gross show. She was interviewing a man. I missed the beginning. The man was talking about how while growing up, his grandmother treated men like ... She would have all these men chasing her, and she would just dangle them. How they would call constantly, leave messages, even crying and begging for her attention. Years later (as in recently), he told his grandmother he always thought she treated those men like that as punishment for what grandpa did to her. Anyway, she became age 90, and needed more hands-on care. So, they put her in an AL (or NH?) Anyway, he said that after putting her in, every time they visited, she begged them to take her home, etc... Then one day, he was shocked. She found a boyfriend. They're in love. And just recently, they got married. The family is still so shocked that she 'fell in love' after decades of treating men badly.
This interview kind of touched me because I felt sooooo bad that they put her in an AL/NH. And that for weeks, she kept begging them to take her home. Reading it here is sad. But to hear it from someone, it's even more heart-wrenching. Ugh!!! It made me realize how terrible this must be for those of you who have done this, and to feel the guilt every time you visit, and they want to go home. Kudos to you all. That's all I can say. Kudos!
These fractures are just awful
Too beat to even write much. My parents are roommates now at the
Rehab because mom broke her pelvis at Memory Care on Christmas day.
Finally getting some medical info on my mom. Turns out they had our old landline number on mom's records so didn't get a call on her spinal xray. We haven't had that number in almost a year and my paperwork from them has current my cell number on it. WTH?
So the info arrived in the mail yesterday from the xray done 12/23. My mom has multiple spinal compression fractures, demineralization of the spine and multiple bone spurs. Um. No wonder she has horrible back pain!!
I made an appointment for 10:30 this morning as mom still claims she hasn't had a bowel movement and we need more pain meds. Had the same doctor and she said she was glad to see us as she had been frantic about being unable to contact us by phone. She said she finally decided to mail the papers and hoped I would call. She was totally apologetic which was nice as most doctors are not so quick to take blame for anything. She said she caused mom's constipation with the codeine and she takes full blame for that.
Beyond that, she said the clinic is not equipped to do enemas so she directed us back to ER with a referral so we got in quick. Also got a referral to a pain med clinic that specializes in medication for mom's situation with spinal fractures. She prescribed 600 mg. ibuprofen in the meantime for a stopgap. No more codeine.
So onto the ER. Doc there was concerned that mom hasn't been able to pass urine in 24 hours. He did an ultrasound and mom's bladder was huge. They did a catheter on her and got out over a liter of urine! That from a now 80 lb. woman. Next they xrayed her bladder and colon. After that point I was able to see her again and she was so confused from the narcotic (dilaudid) they had to sedate her with to do these procedures. It was just so achingly sad. The xray didn't show much in the colon. Next was the enema. I left the room again. They said there were no blockages and what little stool there was came out easily and was soft.
I know mom hasn't eaten anything but tiny amounts for days but she denies that. This confirms it.
Doc says the bladder is the problem, not the colon. Referral to a urologist. Could be related to compression fractures or possibly cancer, but only the specialist can tell for sure.
She is now on the catheter and bag until we can see a urologist on the 18th. That's going to be a looooong wait. When we got mom back to her AL I had a talk with the nurses to make them aware of the changes in her care. They assured all will be fine.
I hated to leave mom there as she was still somewhat disoriented from the narcotic and a little nauseous. She kept looking down her pants to see where the catheter was hooked up. I tried explaining it in rational terms and she wasn't understanding me. I finally told her it was up her cootchie (!) and she quit looking. *sigh* After a seven hour day, my husband had pretty much reached his limits and I admit, I had too. This is so very stressful for everyone. Mom looked ready to nod off soon so we went home.
Now I'm off to look up female urine retention with spinal compression fractures. I'm afraid the catheter might be permanent. The same thing happened to her older sister who passed many years ago.
Thanks for reading my long post. Off to collapse! :(
Mom has had a lifelong need to be "better than" and has always seem the "hidden meaning" in the actions of others. I think I must have learned how to ignore this stuff in therapy. Have you ever been in therapy? It really worked for me in getting a handle on the craziness of my family and how not to let myself get sucked in.
OMG! I feel stuck between a rock and a hard place today. I am now aware that it really is my codependent behavior trying to rear its ugly head (taking on the feelings of others), but GOODNESS!!!
I try to call Dad a couple of times throughout the day when he doesn't go to the Adult Day Center, but I may need to cut back on it. He's just one of those type of people you can rarely ask "How's your day going?"
Today it's been negativity ALL DAY LONG. Some of it I attribute to dementia, other times, I am convinced he's just a miserable old grump.
1) He complains about other residents / attendees.
-The ones in wheelchairs are too slow (Not everyone can afford a motorized scooter like him).
-"So-and-so" can't hear (Neither can you. I only give you the silly earwax drops so you'll SHUT UP about it being a buildup! I can hear your TV when I get off the elevator)
- "That guy" is "NUTS" he can't remember anything (DAD... NEITHER CAN YOU!)
- All of the nurses apparently want him as a boyfriend which leads to MASSIVELY inappropriate comments and avoidance (at 86? Really? That's DISGUSTING)
2) The technology woes - AAARGH!!! He is wearing me out with the silly remote!
I think some of the staff may watch TV in his room and change the channel. Since Dad can't see the remote (legally blind), I glued a textured clothing button to the channel up button on a remote control for the visually impaired and instructed him to just use that button. The problem is, the AL offers about 100 channels on their cable network and Dad doesn't have the patience to surf through all of those channels. The result -- complain to me about it rather than ask for help from the staff!!!!
3) He's self conscious about his constant sleeping and is convinced everyone is talking about him and ruining his reputation (NEWSFLASH... NO ONE CARES!!! YOU'RE WORRYING FOR NOTHING!!!!)
4) His lunch table was full today, so the staff member placed him at a new table. One of the ladies at the table left when Dad sat down. I don't know what to say except that some people are still just "like that", and we are in the South -- other residents immediately invited him over but he's hung up on it.
I hate to sound so whiny, but I get so frustrated sometimes. Sometimes I wish there was someone else that could pick up the phone and call him to relieve me.
Once he went into AL, it became clear who really cared and who didn't. My stomach is in knots right now. I don't want to talk to him anymore today, but I still feel guilty if I don't call him...
UGH!!!!!!!!! MY BIG WHINE MOMENT: GOD WHY DID YOU PUT ME IN THIS HORRIBLE DYSFUNCTIONAL FAMILY AND WHEN WILL I BE FREE?!?!?!
I went through the "It's not dementia" blues as well. I even had a cargiver to say to me verbatim "He doesn't have dementia, but I'll keep taking your money to help out since you obviously can't take care of him yourself..."
I'm not a doc, but I feel like just because a "test" doesn't confirm that someone has a certain ailment doesn't mean they don't have it. I'm sure anyone would agree that some of your Dad's behavior fall outside of "normal" behavior even for a senior.
...they don't call it PRACTICING medicine for nothing.
As we say in my neck of the woods, "Keep on keeping on..." The road is long and hard and you really are doing the best you can with what you have to work with.
We're here to vent to all you need...
When my mom was in the hospital post stroke, the discharge SWs and RNs sat with us and went over what mom's ability to pay was. they recommended facilities that would accept her as a Medicaid patient after a certain number of years of private pay. Ultimately, we got her into a better place by being upfront about her financial situation.
My experience with mom is that any extension beyond the 20 days has to be approved by Medicare and is dependent upon progress made in rehab - her injuries were very specific with fractures so I suspect were a bit easier to get extensions but it was only for an additional 2weeks
I hope you learn something useful tomorrow and can at least get an idea of what plans you need to make