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.
Ask the staff why they won't allow Dad any food. Is it because they think he may need emergency surgery. If that is the case what will have to happen for them to go ahead and what will they do? Ask them flat out if they think he is dying. You have a right to know. Does brother have POA? bug him till he tells you what is going on. You have a right to know. You have been very brave through all this.
Don't worry about dad's mouth, the nurses have heard it all before. you are not responsible for his behaviour. I can't explain why the blood was not coming out with the urine unless it is actually from something actually in his penis.
Now take a deep breath and hang onto something. The treatment may be to amputate his penis and redirect the urethra to his periniuem and let it out drain out of there. that is the area behind his testicles. He will have no control but they may put a catheter in or just drain it into his pamper. they may or may not remove his prostate at the same time as this may also be a source of the bleeding if he has prostate cancer. This is really going to be horrible to deal with as he will not accept this decision peacefully.
I don't know about any of your local spirits but it could be they are gathering to take dad to his next destination. they may be mad at him becuse he has caused so much suffering in other peoples lives. The near death spirits I have heard about have usually been peacefull comforting the dying. They may have followed nephew home for some reason. Perhaps eldest sis can have a word with them and ask them to be less aparent. Try and rest Book this is going to take a little while and you need to remain strong. Blessings
dm - you did your best for your father these past 10 years. At least now you know that you did your best for him. Until he pushed you too far from your set boundaries. I don't blame you for putting him in NH - especially with the safety (physical, mental and emotional) of your daughter. You did good.
MsDaizy! I soooo miss you! I tried hard not to post in your Wall. I wanted you to come back to AC when you were ready to do so. I just came from the hospital. He said that every time they change his pamper, he's bleeding down there. He wanted me to sneak his bottle of pills to the hospital. He's complaining that they're not feeding him. He pointed to the IV and said that they said that is his replacement for food. He wants me to sneak his nutritional drink to him. SIL didn't know,and gave him a cup of water. The nurse said that we're not suppose to give him anything - at all. I'm surprised. I guess they're trying to isolate the problem by taking out any outside food/drink intake. He told to me to find the telephone. That they're hiding it from him. He sometimes forget he's in the hospital and thinks he's at home - hence the phone being hidden.
He had to go to the inpatient unit at hospice for a week this past week after he took a fall while home alone ( he wouldn't let anyone come in and see him besides the hospice nurse, me and my daughter). He is 86 and doesn't have too much longer to live. When they transported him home today, he was fine at first but then became vulgar, abusive and downright combative with the caregiver and the hospice nurse. They had to call in a nurse that deals with combative patients.
I was trying to keep my father at home rather than place him in a nursing home because it hurt my heart to think about doing that. He saiid some vile things to me and tried to hit his own granddaughter. He was lucid and knew perfectly well what he was doing and to whom he was talking. The remark he made to me is unforgivable. Today completely changed the way I feel about my father. I feel so displaced and out of my body. I feel like my whole life as far as Dad is concerned was a complete lie. I'm placing him in a nursing home Monday. There is a hospice nurse with him now ( and a caregiver) that will keep him pretty much sedated until the move Monday. I do not EVER want to see him again unless he is medicated and there is a buffer between us. He is 86 and has been angry his whole life.
10 years of my life I can never get back. I hope and pray that I will have a chance to enjoy life again. Thank you all for listening.
Only recently, one of them's MIL is needing 24hr help. Only now she understands my viewpoint. When she told me this, she had tears in her eyes. I guess, she finally can see what I must have been facing while everyone was going on with their lives and not understanding my view. So sorry.
I have noticed when I do attend our monthly caregiver's support group, that a lot of them before were strangers. And now I can see how close they have become. Because I'm not regular, I still feel like a newcomer and they also respond to me as one. If you can find a caregiver's support group, and just try to be regularly like once a week or bi-weekly or monthly, you will find new friends who understand your new stage in life as a caregiver.
After talking to nephew, I went to oldest sis and asked her if this is true. You see, dad kept telling me of these people watching him. I just thought it was dementia. Lately, he's been telling me that they're trying to hurt him. that they like me and don't like him. I just never believed him. Senile. So, I confronted sis (who talks to them). She looked at me as if I should know that this! She said that they are gathering around dad, waiting for him to die. Eeewwww!!!! I sleep in the livingroom to keep him company at nights!
So you say your friends have moved on.... well, in many ways so did you... you are at a depth of understanding and compassion, and strength, they have no clue about... so ya, they had some freedom you didn't have... but you are some place on a spiritual plane that would never make sense to them if you tried to share it with them..... so you find new friends..... find some hobbies that keep you busy with something besides caregiving... I know how demanding it is.... but find something, anything that gives some type of creative outlet..... you might be amazed at what you can do.... hang in there...... you are worth some ME time..... hugs and chocolate
confused because last week we were in the ER and my mother was incapable of communicating and the doctor was telling me that I would have to find her a NH...and this weekend, she's up sorting through her stuff, talking about what she wants to embroider, acting like nothing has ever been wrong with her.
I mean..WTF?
Can you believe lastnight, oldest sis clears off dad's side table with all his 5 plastic cups, and only washed 3???? I stood at the sink this morning to make breakfast and just stared at the 2 cups in the sink. ??????? She already washed 3, what's 2 more???? Is she punishing me because in HER MIND she's doing all the hard work? And I get off scott free by going to work, leaving her to face dad's terrible mouth? I still pay sis "babysitting" money from my own limited income, and I give her also from dad's $$$. I don't pay myself from dad's money. Why should I? I have a job. I don't need his money. I change his pampers, I bear the hitting and kicking because I refuse to jump when he tells me to. My brother keeps telling me that she's ... not all there in the head... that I need to be patient with her.
This is the brother who lives next door. Who, since mom died, has cleared out our land, and is now planting Japanese grass - making a lawn...every weekend...They weed every weekend. Who keeps asking me if Dad has a Will. Last night, he asked me again if there really is a Will. He doesn't believe me. He told me that there is a POA that will still apply after his death. I said no. The POA ends at death. That when dad dies, the Executor of dad's Will takes over. And that He is the Executor - Dad has told us this repeatedly. Oldest bro insists that there is no Will. He Insisted that there IS a POA that is still valid after death. His wife has that kind of POA for her aunty. That when her aunty dies, SIL still has control. I said that then SIL has Executive of Will power. Oldest bro said No. It's POA.
I think... oldest bro... thinking that Dad doesn't have a Will, is going to try to get the doctor or Dad sign a POA that will still be valid after death. Oldest bro, Executor of dad's Will is now going to try to make a Legal move for POA that is Valid even after death. Ohhhh, what a mess when dad dies!!!!
Everyone (EMS, hospital staff) seems to be lecturing me about having no POA or medical authority for father. I'm so tired of explaining over and over how old fashion he is. Only male have the brains, and us females know nothing. I'm tired.... I still have to do more laundry, cook rice and take a nap.
LadeeM - Oh please an inspiration. Give me a break. But thank you for the compliment. Now my head is going to be bigger. Yes, bro is a controlling, self righteous idiot. He has to go up in the attic tomorrow. It will be 90 degrees here. It will be hotter up there. Well, it is his fault. Mom has been gone since January. He could have it any time. But you know he needs his day OFF!! Boy, is he going to complain about it. Yes, he will bitch and moan. I have ear plugs. LOL Take care of ya'll.
I was nervous about it too but every drug has side attacks, they just haven't made it on TV!!
I found out that the nurse R came this morning to change his catheter (monthly.) And dad wanted to go on the wheelchair. So, nurse R got him on the wheelchair..... In response to dad's call to come change his prostate tube, nurse P came this afternoon, he examined dad. His stomach was hurting, his p*nis was hurting. The nurse saw that No Fluid had drained since the change this morning. So, he changed the tubing from his p*nis. Sigh.. I was helping the nurse. I saw the blood spurt out and I deserted him. The blood did spurt out..literally. Sorry.. I don't do blood. When he was done, he left dad's pamper open. I looked at it. and said, "He's still bleeding. Will it eventually stop?" He reassured me that it would. He left.
About 5 minutes after he left, dad started shaking so hard. His whole body was shaking. I thought he was going to the next stage of senility - Parkinson disease. I asked him why he's shaking so hard. He just kept saying that he doesn't know. Are you hurting? Yes, his weak left arm was tightly clenched to his chest, and his speech was blurry. He was struggling to speak. I thought he was having a seizure. I called oldest sis to come and check dad. Is it seizure? She stood far away from the bed, looked at him, then me, and said she doesn't know.
In frustration, I went to my brother's home next door, hoping he would be home. Not. So, I asked my nephew to come and check grandpa. He called his older brother. Both of them tried to talk to my dad, asking questions. Dad refused the ambulance. So, I called the nurse's 24hr number. In the middle of talking to him, my nephews told me to call 911. I said that I cannot call 911 if grandpa doesn't want the ambulance people in. I can hear the nurse on the phone, "What ambulance? What's going on? Hello????" So, I explained the situation. the nurse said he was coming back.
Nurse came. Dad's still bleeding down there. But his pee was also going down the bag - no longer clogged up. It's weird how his blood is coming out from the p*nis but his pee in the bag is not bloody. I would have thought it would have dark blood also coming out with his urine. Nurse took his temperature. Dad had a 103 temperature. He immediately started trying to bring down his fever. Gave dad 2 500mg Tylenol and his fever was still high.
So he said that we need to take dad to the ER. He then told dad very calmly and firmly that he needs to go to the ER. Dad agreed so meekly. I told the nurse that we need to put a lifter blanket under him. The nurse said that there's no need. The EMS will just pick him up from the mattress bedcover. I said no. The last time we called the ambulance for mom, the EMS said that we need to put a lifter under mom. So, they stood there watching me and oldest sis (who you all know doesn't help with pampers so... she just stood there opposite me and watching me struggling to put the lifter under mom. I snapped at sis to don't just stand there but help me.) Anyway, the nurse was surprised. I said yes. They expect us to have the lifter already under them. As we were putting the lifter under dad, when they turned him, I saw all that blood on the bedding. A lot of blood. Even my nephews gasped. Veronica, I have you know that I was able to pull the very very bloody bedding and not flee from it. I ain't washing that! It went directly into the trash.
Ambulance ride was too fast, down the curvy hill, up the curvy hill, around the statue, sharp right turn. This was the first time I wanted to throw up from the back of the ambulance. I have ridden enough on it when mom had to go to the ER. But I never felt nausea. Just as we reached the entrance to the ER, dad threw up - a lot from his mouth to his shirt. The EMS didn't notice it. I said, "Uhm.... he's throwing up."
They gave his IV antibiotics but... the nurse said that they have to admit him. I said, "Admit him? I thought that we just give him antibiotics and then send him home." He said that he has too much bacteria and they don't know where it's coming from. Dad was admitted in the hospital at 11pm. SIL said that I don't need to stay in the hospital. I said that with his senility, it's best that I stay. She told me that her son would come and be with dad. So, I left with them to come home. When we got here, she decided that dad doesn't need anyone. So her son is not going. I just stared at her. But, I'm too tired. Whatever..... I definitely don't want to stay and watch him. He has this nasty habit of verbally treating me badly in public. Even the nurses would tell him that that's not nice to say to his daughter. He don't care. And that is the current status.....
Your brother is a jack*ss....... sorry you are stuck with him, but you have done the majority of all this by yourself.... let him b*tch and moan..... and do some work for a change... do you have an ipod??? Turn the volume up and dance your way to happiness by not having to hear him.... it's almost done.... and then your new life begins...... lots of hugs to you Lav.... you are an inspiration to us all.
Thanks, Lav.
Smeltzer - I am sorry your Mom is acting out. The way you described what she was doing I would have thought that she had a UTI too. Is there anything she can do inside that would keep her busy. My mom did daily exercising that I think kept her busy so she could rest when she needed too. I think she liked the routine she had to do every day. I hope things get better for you. Take care of YOU!!!
LadeeM - I looked at zentangle and looks like something I would like to try. Thanks!! Take care of YOU!!!!
Hi there - well, I have stinky garbage in the house. I could not bring it outside for the trash people because we have raccoons. I did not know we had any until the garbage can outside was turned over and the trash was all over the place. Well, I was going to bring them outside this morning but they came early. Damn!! What makes it worse is that it has uneaten cans of wet cat food that stinks to high heaven. lol Brother is coming tomorrow. He is bringing someone to go up in the attic and bring everything down. He took a look up there and there were boxes and boxes of stuff. He was mad. He said why did they (parents0 keep all that stuff. He found a strobe light that went back to 1959 up there and a box of my baby clothes. If I was my brother and he was me. He would ask why did I wait so long. I will ask him that same thing when he gets here. Mom has been gone since January. The appraiser is coming Tuesday. He is very good at giving orders but not good at looking at his own behavior. sigh!!!! You all take care of YOU!!!
Smeltzer...Have your ruled out any other physical problems... such as a possible toothache, or pain that she can not tell you about, constipation.... ???? And then sometimes they just get restless.... L had a meltdown Wed. night..... thought something on TV was real.... how does she do if you ignore her, or just let it run it's course... does she get worse?? Is she on any meds for the anxiety?? I know first hand what this is like, so hope you come back and give us a few more details so others may have suggestions too.... hugs.