I know how you feel. It is like everything we did was for nothing and my FIL knew or remembered nothing... He never remembered we visited.. Sometimes I think we just worry about his comfort care and physical well being. Well, the doctor will worry about his health and we just do the best to provide secure comfort care... What is the point? That is why my husband does not really call his Dad anymore. Nothing his Dad says means anything. It is the same: When will you come? Glad to hear you? I am working and etc... Nonsense and small stuff that is not worth a lot... Even the comfort we gave him is only for the moments. At least he remembers his son's name.
Yes, we live for their moments. We do these things for his comfort at the moments. For him, he lives in the moment, not the past or the future...
I also like to think that this is a good research case trying to understand Alzheimer's!!! I feel that he is providing good jobs for the caregivers in the home!! Really, it is his contribution - provide other people jobs! It is like what he said - he can provide his elder son the job at the home (this is not true of course.)
I know your frustration. This frankly is not a good quality of life for them anymore as they are more and more dependent and lost the right way in life... If they knew... My FIL would not want to live if he knows he is like a clown. He now gets agitated in the bathroom because he lost his walking ability and etc...
I do ask that kind of question... No, I don't want him to die, but it is a hard question... What is the quality of life? What is the point? I guess we can only do what we can do...
You could also try to find another sitter to help you. A paid caregiver or someone else is more neutral and has no emotional burden, so the new people can do it without feeling very bad and they are happy to do it as they are making money as well.
Hope you will find more help,
Last edited by ninamarc; 09-01-2011 at 02:04 PM.
The Following User Says Thank You to ninamarc For This Useful Post: travelgrl (09-01-2011)
Did she enjoy the activity in the moment? Did you enjoy the activity in the moment? It is not about remembering, it is about the moment. Why do you do these things?... to give her pleasure in the moment. You do them to keep her engaged, socialized, active, and help her maintain what cognition she has. If she just sits with good food and a clean bottom she will deteriorate more quickly.
You are expecting her to react as if she is normal and she is not. If you get a simple smile while the activity is taking place then that has to be enough because that is all she has to give you. Even if she doesn't remember those fun moments... you will! Don't expect her to come back later in the day and say think you for something she doesn't remember. Take that smile while it is happening as a thank you.
Just go with the flow and don't expect Mom to react as she did pre dementia.
The Following User Says Thank You to Gabriel For This Useful Post: travelgrl (09-02-2011)
I had a full blown meltdown yesterday, I knew it was coming. It was ugly. Fighting this situation, my living arrangements, her husband just got to me.
She exploded when my husband decided to eat his sub in our room while he read the news. Remember, there is no TV here, so he unwinds via computer.
Mother blew a gasket, it is her house, her rules, no one can eat anywhere but the dining table yet they eat in the living room, blah blah. I did lose it and told her that was ridiculous, I clean up and wash the dishes. My husband feeling so horrible to have upset her didn't eat, she went on for hours about it. I just lost it and cried and cried.
Thank you for allowing all the vents I have needed coupled with the wise words which eventually will sink in.
I am so sorry that your Mom did that. I am still puzzled with her behaviors. It seems she is not completely off with dementia. It is like stage 5... So she just walked in and saw it?
It is interesting that she still cares to eat at the dining table. My FIL didn't do that because he didn't want to eat alone and he ate in his recliner watching TV all day. I am glad he now eats at the dining table in the residential home - but I am not sure how long it will be since he has trouble walking now.
I am sure your Mom's overreaction or emotional outburst has to do with her brain damage. Don't take it personal. I know it is hard.... Is there any way you and your husband can get a place on your own and you can come back to help her at times?
This way it may help your mentality.
Annie, Mom gave you exactly what should be expected. She gave you demented behavior. I truly believe it was not just this episode but the build up of the day, week, month, year that boiled over. If you are going to stay there and do what you need to do for your Mom then you need to work on your thinking. We are what we think and right now you don't think you are doing very well.
"I had a full blown meltdown yesterday. I knew it was coming"...... You didn't know Mom was going to flip out over something simple? Wait we know that Mom does that. We know that Mom will lose her cognitive balance over something simple. So you anticipated the meltdown, knew it was coming, and Mom gave you the excuse you needed to have it when you knew she would before the day was out. Your thinking set you up.
As I said, Mom is going to display demented behavior and that is exactly what she did. She did what should be expected of her. Hubby did what he needed to do... took his sub to the bedroom. He didn't know that Mom was going to pick that specific situation to sundown over (and that is what you saw). Why should he feel guilty because Mom reacted irrationally to an innocent attempt to enjoy his supper? Were you defending him and protecting him from dementia? Is that a good use of your time or energy? Were you just venting all your frustration in Mom's direction when she was doing exactly what should be expected.
What happened was that your reaction did nothing to help the situation or make it better. You and hubby are hauling around a dose of guilt that is only going to fuel the next blow up. Your Mom was sent into further anxiety by the reaction she received.... but today it's as if it didn't happen to her. Only you and your hubby are left with the emotional baggage. Primed and ready for next time.... see the cycle.
Mom can't do any different so it is up to you to change. What would have happened if instead of expecting a blow up you said to yourself... Mom is going to show us the unexpected dementia behavior and I will deal with it as it comes my way. They you are confident that you can handle it.. rather than assured you will blow up. Then you can use the techniques you know will work better to make the situation better. What if you had just said to Mom... "I know that upsets you. Sorry it happened. It won't happen again." This is validating and taking her anger away. It may take a few minutes but Mom is much more likely to calm down than if she is confronted with challenges. That leads to more confidence in your ability to do what needs to be done Yep the cycle can change.
Venting is great, just don't let your thinking stay there. Tell yourself that even though you can not prevent Mom's demented behavior... you have the tools to handle Mom's demented outburst.
If you are still very emotional about it, there is nothing wrong. Every caregiver does it differently. If you find yourself too emotional to deal with it using the tools, keeping a distance can help. It is not so simple because you felt hurt. It is normal to be hurt by her reactions even though it was not rational for her. You need to get rid of the hurt first so you can deal with it.
When I felt bad dealing with my FIL, I walked away. It is my husband's Dad and he deals with him calmly. If my husband cannot do that, he walks away for a while.
What Deb mentioned is true but it is hard because you felt hurt. Also don't protect your husband. Let him help out and get involved.
Never said it was not hard but we can change our thought process and therefore change the way we react to a situation. We tend to think in black and white... all or nothing. We can't take this, it is horrible, we are going to blow up, life is terrible.... and on and on. By changing our thought process it does make life easier.
Yes, demented behavior can be hurtful. It is not appropriate in our normal world. But that is what happens with demented behavior. When Mom would blow up in my direction (and it was at least daily or more often) I used to think "Wow, how could she do that to me?" That is what caused the distress. Her actions or normal and expected for her condition. She couldn't do any different. As I learned to change my thoughts to "Well, there she goes again!" I started seeing a way out rather than become hurt and angry at her. There were times that the "hurt" was still there but I also gain a confidence that I could handle the behavior to minimize it rather than to make it worse.
All the emotions we feel are legitimate. Our loved ones are in a sad situation and take us there with us. They do hurtful things. They are frustrating. Recognizing those feelings is a good thing but don't let that lead your reactions. By giving validity to the feelings but knowing that we are capable of handling whatever comes our way... we spiral upward not downward. We need to do things that are helpful to the situation not spiral us downward into those black and white emotions. We control what we can and the one thing we can control is our thought process
Mom is going deteriorating. Help from my family is scarce at best. I am dealing with an incompetent unit coordinator. I have lost my favorite Hospice nurse to corporate wrangling. Two of my good friends have lost their Mom's to this disease in the last few months. I can go on I could dwell on all of this negative and send myself into a depression. I could use the things Mom and family says to fuel my frustration. I would let the situation at Mom's facility make me angry. Things that have been said were hurtful and I could grab hold of that. But I chose to think differently. I know what to expect from Mom. I have no doubt that she will deteriorate further and will displace behavior consistent with her condition. I have handled this for 5 years and I know I can do it. My family has their own choices to make and I can't change their thought process. But I can change mine so I see it as a hindrance but not as a huge set back. I can do what needs to be done. Rather than crumpling under the incompetence I have put in place safeguards for Mom's care and continue to work to make the situation better. Rather than being devastated by the loss of my favorite Hospice nurse (I truly adore her and miss her)... I am building a new relationship with the new nurse. As for the hurtful things that have been said... they are just opinions and I know better!!!
It is not what happens but the thought process that we put in place that determines our emotions. It's not all black and white... it is the colors that we add which determines our emotional well being Yep, my situation right now is a huge mess but just before I walked in here I was singing to an upbeat tune because I am taking steps in a positive direction and not spiraling down with the negative. I am in control.... not of what happens but what I make of it!
As for the hurtful things that have been said... they are just opinions and I know better!!!
Well said! Deb! We are all adults so we can choose what we think. You have helped me by accident about this thought process. (I have/had some issue with my sister(s).)
It is so true. Sometimes you can still see that the elders really mean it and it is true it is her house. But she didn't have to go like that for a long long time. You can choose to laugh about it and tell her sorry I won't do it next time.
The thing is it hurts because it has some truth - the elder is not totally wrong. If I am in my relative's house, I need to follow their rules too.
Part of the problem is the duration. The ridiculous length of time of this outburst.
Once my FIL had a new can of soup for lunch. It is great. A full bowl. Well, he wanted more. It so happened that he was not in a good mood about his sickness. But we ignored it thinking he was full. Well here is the trouble, he tried to threaten the caregiver with his cane on her shoulder suddenly after 20 minutes. He ran out from the patio without the winter jacket. Amazing that he still remembered the patio and unlocked it!! It was his old house. We called another caregiver to calm him down. It took a whole afternoon to deal with him. Later on, he went to the caregiver and said sorry or something like that hoping she will still like him. Well he just told her boss that he felt like beating her!!!
At this point, walking away and finding another caregiver to help is a solution.
Be creative. Maybe your husband could walk outside to eat since it is summer. Maybe you can walk out for a short time until she cools down...
The first thing you must realize is that this is not about you. It may affect you but it isn't about you. It is about her. This is not her fault and the more time it takes for you to figure it out the more time it will take for you to pull more of your hair out. There is no rhyme or reason in her mind. Yes, she eats in the living room...do you think she understands that while she is complaining about where your husband eats? Nope. And if you think she does understand it then you may as well stand on your head and fart wooden nickels because none of it will ever make sense again. Her days of clear thinking are gone. You have to grasp that. If she says up and you say down then you are setting yourself up ..if she says up, you agree and move on. If she says you CANNOT eat anywhere but in the kitchen then you must say...OMG you are so right..how did I ever let that happen..please forgive me it won't happen again. Then close the door to the bedroom and eat the darn sandwich out of her view. This is a game and we are the only ones who know the rules.
Rule number 1...agree with them.
Rule number 2..agree with them.
Repeat rules number 1 and 2.
It doesn't mean they are right...it means you are accepting their reality. To them it is real. You cannot fight it. You cannot change their minds. Their minds are diseased. It took me years to learn how to do it but learn I did and I have my masters, nope, doctorate in how to agree. Agree, pacify and change the subject...or if nothing else works, you must leave the room. Step away from the situation. Yelling , screaming, crying...do it if you must but out of their sight. They mirror you. If you yell and lose control they will join you in that journey. If you smile...if even through gritted teeth....it may keep them calmer.
As to what's the point to doing nice things with them or for them? It is not so they can remember it or appreciate it later...that ain't gonna happen. They are unable to do that...the point is that you did something kind for your mother. That's it. Nothing more. You got your mother from point A to point B in her day of dementia.
This is a day by day thing and sometimes it is a minute to minute ordeal. I have been through the wars as the others here have ...and finally for me and my mom , after years and years of this, it is over. I look back and know I did my best. I am now at peace...as is my mom.
Deb...I so remember the days of fighting..constantly fighting the establishment. It about made me crazy. You know because you helped me through it just by listening and validating my emotions and frustrations. It helps. Sometimes I think you spend so much time taking care of all of us you forget yourself and forget to update us on how you're doing...on how your mom is doing. And on top of it you lost electricity!? Sheesh..how much can one woman bear!
Meg, this woman can bear whatever she has to bear because it will change in a moment. Yep, my life has been crazy lately. Mom's constipation to the point of impaction started a series of ugly events at the facility which took over two weeks to work out. I have been on a rampage through the facility most of that time. Poor judgement by the unit coordinator didn't help. Ugly things were said about me but I know better and I fixed it! I am not paying for friendship... I am paying for my Mom to be cared for and my expectations will be met with a smile. As of today they now have a poop log! I can ask any time of any day when, how often, and how much Mom pooped and I can get a good answer. For the first time since I started this last June, I know for a fact that Mom is actually getting her Ensure, bottled water, prune juice, and chocolate ice cream. Yep, she actually has prescriptions now for bottled water and chocolate ice cream!!! Since they are doing what they should with hydration... no more constipation. But as you have said so often Meg... it was worth the fight for Mom. It was nice to go in today, know everything has been done that should be done, and I could enjoy Mom rather than sitting in the Facility Director's office.
Mom has been a little more lethargic lately and is sleeping more during the day. Yet she is up again at night and is having difficulties from time to time getting up from a seated position. She has started occasionally pocketing food as well. She tries to eat what she likes and other times she just plays with her food. I did find a caregiver actually feeding her today. Mom did surprise me today. She pointed to the bush and ask...."See the girl?" HUH? Delusions? I hope not but I know what it was. Been there with Dad. I also found her hiding around the corner and she mumbled something incoherent but appeared to be paranoid. Not upset just leery. Yep, something new every day. But I will say the falls in the evening seemed to have stopped since I convinced the second shift med tech that Melatonin was a sleep aid and to be given when she went to bed... not with the early evening meds!!! Yep, it's always something.
Sisters 3 and 4 will be here Monday so I will be at home! And yes... about 14 hours of power outage last night after yet another bad southern summer storm. I have lots of limbs to pick up tomorrow before I mow on Monday. Tuesday is my dental appointment. That should be a nice respite from my normal routine.
Yep, life has been crazy but for the most part I just plow through it knowing that it will not last forever, it could be worse, and there is positive to balance out the negative. An impromptu supper with friends Thursday night was uplifting. Finding new procedures in place at the facility today made the last two weeks worth while. Seeing Mom smile when I gave her a manicure today was priceless. There are some that are not happy with me right now and I might as well wear my witches hat... but I know I have done good things that not only benefited Mom but others in the facility. I have learned to pat myself on the back and that feels good. If I reach the proverbial limit I just remember those that have gone before me and survived.... if they can do it I can too!!! I don't intend to spend Mom's last days in distress. I want to enjoy what time she has left So everybody else better back up and let me enjoy my Mom!
Once again I find myself chuckling at your adventures. (Though I know none of it is funny!) But Poop log? (is that redundant?... Snicker).
If you are still up there on Halloween I want you to wear a witch's hat and go up there. Maybe even carry a broom.
And for treats you could bring Baby Ruth bars. (snort)
Remember what we say...if you haven't ticked someone off, then you aren't doing your job. You, my dear, are doing your job!!
Prescription for water (bwa hahahahaha) ...Not only are you doing what you need to do for your mom, but maybe, hopefully, for those who come behind you.
I am so so glad her falling has gotten better...that always worried me..and yes, the melatonin at bedtime...not near or kinda close to bedtime but AT bedtime. Who da thunk it?! Amazing what happens when you follow the instructions.
And yes, sleeping more..and lethargy. It's all part of the disease continuing its march. I will have to go back and check when mom started it...and the pocketing and early signs of choking. I had typed to "lil Deb" about it. I remembered when her dad was going through it and picked her brain a bit as to what to expect. You know me..always looking for answers.
Sisters 3 and 4...boy, you sure have come a long way baby! You have had more trials and tribulations!! But hey, you get a break..on Tuesday you get to go to the dentist. WooHOO!!!
And, coincidentally, so do I. I will be thinking of you. He was mom's dentist too so I will have to tell him of mom's death. I have done pretty well in dealing with that kind of stuff but you just never know when it will kick in. I was getting a pedicure today and my mind went to my last moments with mom before I left her for the final time. I choked up pretty good. The lady doing my pedicure also did mom's so she understood. Thank heavens for kind people.
You are right. This will not last forever but while it does you have to know how wonderful you are and what a great advocate you have been for your parents. And that is what will see you through after it is over. You will know you did all you could. It is what allows you to put yor head on your pillow at night and feel the peace.
And that you saw her smile today makes me happy. I know how much that means. It is what I hold dearest now. The memory of her smiles.
Seriously, there is a big printed title on the book... Poop Log! I almost lost it. I wanted to recommend an alternate title but the humor was too much. I love the Baby Ruth idea That one actually tripped me up a few times when I was a pool lifeguard. The kids would crack up when I cleared the pool for a Baby Ruth bar!!! I got them back by making them sit out an extended time while I took a swim
The prescription for water has been in place since the Cystitis. That was the doctor's suggestion but they have been slack about giving it so I had to impress upon them the importance. The prescription for chocolate ice cream is new
I don't think they will let her get constipated like that again. She has a history of chronic constipation and they know this. It is in her ISP. Yet they let it happen over and over. So this time... I got her a prescription for 8 oz of prune juice three times a day and make sure she got it. Talk about being loose as a goose! A shower was required each time!!! I left it that way for 10 days to give the new hemorrhoid time to begin healing. Then I reduced the prune juice so it wasn't as messy. I let them know if I found her even near constipation again... it was back to the 24 oz of prune juice a day! There is more than one way to impress people Talk about riding in on a broom hehe You gotta do what you gotta do....
I have seen a decline over the last few months and noticing the little changes. She's not choking yet but she is chewing and chewing and chewing with less swallowing. She has also started avoiding foods that are dry. The cake today was dusty dry and she wouldn't eat it until I mixed it with her ice cream. She enjoyed the double chocolate cake ice cream
The one thing I have learned in all this.... don't just keep running into the stone wall. Find a creative way to slide around it!
Man she was loose as a goose and it was a smart way to impress on them that keeping her on a "regular" basis meant less work for them in the end with less showeres and mess. Very good!!
I do remember when mom also was having trouble with dry foods. It got to the point where everything she ate was dipped in a liquid first...milk or soup or decaf coffee...whatever. It helped. It was last February when I saw mom starting her last and final decline that lead to her death. I saw it more than the facility staff. We know them better.
She may be chewing more because she is forgetting the sequence of eating...bite, chew, swallow. I know you know that .. but for others reading, it is what happens.
Exactly Meg... and each follows their own sequence. Each is similar but different at the same time. You are also right about us being the ones that seem to notice the changes. At least the staff has learned that I am not asking them if something is happening for them to investigate. I am telling them this is happening and they need to be on alert.
Deb, you have your hands full! Amazing that you can tell the home what to do. You are there often and you know what to tell them!
Sometimes some families don't seem to care about that and they just let the home do the work. I am sure the home likes to handle it on their own. Families always bring in some more work... But they should pay attention to the families...
Facilities get in a routine that is a reflection of those in charge. As I have told the Facility Director..... I pay a lot each month and expect a certain level of care. If that is not happening then something has to change. Sure it is easier to give a lesser level of care but I want what I am paying for.... and will accept no less.
Yes, I do know what to look for and what to say. Having been on both sides of this situation I understand their limitations but I also understand what is possible. I am not intimidated and very vocal. I can be an asset or a pain in the butt... his choice!
Some of the changes implemented recently will benefit not only Mom but others in the unit as well. That is what makes the struggle worth while. I don't want it to change just for Mom... but for everybody there