I am at my daughter and completely exhausted. I arrived to find Dad very aggitated on Monday. Monday night I got no sleep. He was hallucinating all night and talking constantly. He was aggitated, getting up frequently and wandering. His anti anxiety pill only made him lose his words but he never stopped the incessant talking. He continued to get up but was not more unstable on his feet. Tuesday morning he shut down. He was almost inpossible to rouse and very weak. This went on until late Tuesday night at which time he seemed to "wake up". He ask for ice cream, read the paper, and slept Tuesday night, only getting up a couple of times to go to the bathroom. I found out from Sister 3 that Sunday night was much like monday night, he slept most of the day Monday, and "woke up" before I got there Monday. We had hoped it was a UTI.... but evidently not.
I did talk to the doctor today and she feels he is having manic episodes. She wants to treat it as bipolar but has to find a suitable medication since he has limited liver function and most medications are cleaned through the liver. I left last this afternoon, he was in a good mood and all seemed fine.
Sister 4 called tonight about 10 PM. Dad has once again escaped out the side door. His wander bracelet alerted the staff and they got him back in immediately. He was combative (he didn't do that with me). They called Sister 4 who went over and eventually got him into bed.
Then his care manager (who seemed to avoid me while I was there) told Sister 4 that it was probably time to move him to the locked unit. I had told Sister 4 of my dicussion with his doctor day so she ask the care manger to give the doctor a call tomorrow. Sister 4 called me tonight in tears because she didn't see any way to keep it from happening. I told her short of one of us staying there 24/7 that this was the best for his safety because Mom is incapable of taking care of him.
I'm probably mot making much sense but that's because I need sleep. The doctor doesn't think the UTI was sever enough to cause the problems we have seen in the last two weeks..... and consistently repeat themselves in a cycle pattern. IBake, I think you were absoluely right when you said it is a slide down that slipper slope. I hate it, but I am ok with whatever it takes to keep Dad safe. I will probably stay here a couple of days and then head back to see what I can do to settle Mom and Dad.
Love, deb
The Following User Says Thank You to Gabriel For This Useful Post: 2rose17 (08-14-2012)
oh deb, i am so sorry. it does sound like a form of mania, if i remember correctly your Dad has never had any sleep issues nor has he been combative? So this is a relatively new turn of events? I'm hoping that maybe a stubborn UTI could be the culprit. How is your mom handling this? I fear that moving him will have a profound effect on her. Deb, you have helped me and others on this board so much, i wish i were able to say something comforting to ease your pain, but, alas i can't. you are right, he must be kept safe, whatever that takes. My heart is with you. now try to get that good night's sleep if you can. you need it.....Lori
can't say much because I don't know what is ahead for us in nursing homes. Just know that we all have the towel ends and will wrap it around you in friendship.
Take care of yourself. Isn't it funny that as soon as things got really rough Sister 4 called you in tears????? And you just treat her as you always do -- with love and care.
Realize that your daughter feels for you and sees your pain. Let her love you and help you through the feelings as well.
Sorry your dad is doing all this ... but I wonder if a locked Alzheimer unit may be the best thng for all of you. He will get used to it, and your Mom will get used to doing withut him. I am praying for you that everything works ot in the best possible way.
My sister- I was afraid that was what we would hear from you. I am saddened for you and your dad. I know how hard this is for you-putting your parent in a locked unit is difficult, even when you know that it is the best thing for them. Your heart hurts at the need for it. For many reasons it hurts. Your hurt for the realization that he has to have it, that that stage has been reached, that his abilities have diminished, that you can't provide for his needs. The pain is deep and personal.
I know that this will be difficult on your mother also. She can't provide the support that your father needs, but she doesn't need the level of care that he so deparately needs at this moment. They have never been separated and this will prove to be difficult for them. She may deteriorate also without him nearby. I hope that the facility will put a watch on her for the first few weeks to monitor her and make sure she is coping alright.
Sleep my dear friend. Your note made perfect sense because we can read what you meant. Let your daughter care for you. We are here arapping you tight in the towel of comfort and care. We're not going to let you go no matter what. You and your faddy and Mom are in my prayers.....
With 6 hours of sleep under my belt I am better. That's more than I had the two previous nights combined. I had to get up and take my daughter to school this morning!!
Having been there, seen the documentation, and talked to the staff I am convinced this is not a UTI. I talked to Dad's doctor and she agreed with me. I said "He seems to be having manic episodes that come and go at a flip of a switch". Her comment back was that she had expected the manic tendencies but didn't have the documentation to prove it that I finally gave to her yesterday. She is searching for appropriate medication but has to be careful which medications we try because of his limited liver function.
As for moving him into the locked unit..... I made my peace with that months ago when it first came up. It will absolutely be another adjustment period for both him and Mom but as I told Sister 4 last night, we have known for a while that this was coming. No, it's not what we would wish for but it is what it is and we have to do what is in their best interest, not necessary what we wish or what they wish for.
You are right caring, as much as Sister 4 bashes on me, when she is overwhelmed she known I am there to grab hold of. I was kind and supportive of her last night. I expect her to be back to bashing me in a day or two . She truly doesn't get my thought processes....
I can't worry about where we have been. That is the past and it cannot be changed. I don't worry about tomorrow. That is yet to be. I can be prepared and confident that I will handle whatever happens but that's about all I can do. There is only today. I need all my energies to deal with what is and don't have any to waste on stressing about yesterday or tomorrow. Sister 4 is the opposite. She is consumed with yesterday and stressed with worry about tomorrow to the point that she has nothing left for today. Then she falls apart from being overwhelmed and wonders why I don't.
This turn does sadden me because I have lost another piece of my father. I am definitely Dad's girl. The entire time I was there he never once because combative or aggressive. He came close but my whisper in his ear... "Trust me Dad?" still worked. He told me to be careful and he loved me before I left. That is what I hang on to.
So we will see what today bring. Perhaps the doctor can find a medication that will work to lesson his aggitation. Perhaps he will be moved temporarily or just at night as was suggested. Perhaps it is time for a complete move downstairs. I don't know at this point but I do know whatever happens I will deal with it and my sister..
Love, deb
I will find me a quiet corner to cry in when it's all over...
Dear deb,
I'm so sorry your Dad is slipping. As close as your parents are its going to be very hard on all of you if you have to move him. Your in for another hard time.
Try to rest and enjoy your time with your daughter. I'm thinking of you as always. My thoughts are with everyone going through this hell........Keep in touch. I'll worry about you.
Chris... I am ok. No, it's not going to be easy but it is also something I knew was a possibility and I was prepared to deal with. I gave up living in denial a long time ago and I know I can accomplish whatever I set my mind to as long as my goals are realistic. Dad's safety is my priority and wondering around in the snow when it is 20 degrees is not safe. So when weighing the options.... I will deal with the move to the locked unit! This may also be a step that mom needs to help her detach from her "caregiver" mentality. Perhaps it is a step that Mom needs before Dad leaves us.....
Dad's health is not good either. His doctor and I discovered yesterday that he is having a major drop in his O2 levels when he exerts himself, even slow paced walking. This could explain the confusion at the end of his wandering adventure. Yet as we experienced with the walker and wheel chair, he nor mom adjust to new equimentment well. I also noticed much worse edema of the lower legs, more instability, lack of energy, and windedness.... which is all more than likely an indication of an even more ineffective heart function. And the heart function is tied to the vascular dementia....
We will see what today brings
Thank you all for your love and support. It absolutely means the world to me. I'm sure people wondered why I had the hand towel hanging out of my back pocket. It did a wonderful job of holding me together and for that I thank you all...
you and your sisters should get your mother out of the room and involved in the activities of the center. Get her to truly meet with other woman there, etc. and force this.
She'll need to be diverted in her attention when your father's not around.
I don't think it would be good for them to visit one another. First off your Dad won't know she's there and second, she will be at a point of acceptance and then seeing him again will pull her right back into the "I can't leave him" mode and be depressing for her.
Once the break is made, I feel for her health and wellness it needs to be a clean break but again I'm not an expert. I just know how I felt each time I got to see my husband and had to leave the hospital and go home.
Deb...I know you knew this was going to happen...but it sure doesn't make it easier, does it? I'm glad you've armed yourself with information you'll need...unfortunately, this is another stage beginning.
I would like to say a few things in defense of a "locked unit"! The Alzheimer's facility Mom was put into after a few month stay in a NH brought the relief to me and my siblings that we needed. We were very much at ease with her placement. Her safety and well being were well taken care of...she WAS aware of her surroundings...and MAD, MAD, MAD...but those challenges lasted only a couple months before she accepted this as where she always had been. Hard? You bet! The peace of mind to all of us made us realize it was the right decision!
I have a friend who placed both parents in the same facility as Mom about 6 months ago because of my recommendation. The time came a month ago for their seperation. She was much more worried than she needed to be...her parents were in different stages...and the change was not as difficult as she thought.
It's so difficult with several siblings too! There are 6 of us...all at different "stages" ourselves in the beginning! It will work, Deb...the farther into this disease your parents get, the more your siblings have to accept what they cannot change. Stay the strong person you are, my friend!......Pam
Thank you Diane and Pam. As far as Mom and Dad's visiting... I will leave that to the experts at first and seen what happens. Mom is so geared into that caregiver mentality, that is where she stuck when the dementia struck, that it's hard to tell which is the best. I am taking it day to day and will make decisions as they become necessary.
Diane, we have made every attempt to get mom involved in something other than Dad's care. We had two things going against us. She still had Dad which kept her stuck in that caregiver mode, and she has also lost her ability to socialize. On rare occassions she has participated but was, thinking of the right terminology here, very much alone in the crowd. With her hearing loss, paranoia, and being uncomfortable in her ability she doesn't interact well. We have even hired somebody to stay with Dad, encourage her socialization, or go with them both to activities. Most times Mom refuses but if she does go she immediately wants to go back to her room. It is her safe haven. We have not given up but know it is not going to be esily accomplished if at all.
Pam, I truly do not have a problem with the locked unit and short of a miracle I do believe it is where he needs to be. Mom is incapable of dealing with him now and it is for both their best interest. It is difficult to see another piece of my Dad slip away. But it is also inevitable with his disease. I tend to be proactive, consider the options that are to come, find out all that I can, and be ready to make the decision when it comes time. I don't waste time worrying about what could have, might have, should have, or will be. So I am good with the decision.
Your point about the siblings being at different stages as well is so very true. I have learned more about my sisters in the last couple of years than I did in the previous 50. I am getting very good at predicting their responses as well and that has prepared me for what I need to do in that arena. I find it interesting but not unexpected that today, Sister 4 is clinging to me like a lift raft and sisters 2 and 3 are nowhere to be seen.
I did call sister 4 this morning to make sure she was ok. I attempted to contact sister 2 and have heard nothing. Sister 3 is recovering from 48 hours in facility during our recent 7 inches of snow. Sister 4 had not heard anything from the facility when I talked to her. She is the wait and see type. They did have to contact the doctor, then decide the best course of action. I will update when I hear something. Until then I am going to pick up my daughter and take her to lunch
Enjoy your motherly duties-spending money on your daughter! You need the touch of reality. It is a pleasant break from the paranoia of the planet.
Your Mom will suffer without your dad. For serveral reasons. First because that is stuck stage she is in with him. That is all she knows how to do. Unfortunately that is where the grove in her brain record got caught. And as you have said so often, they feed off of each other. They have a symbiotic relationship, and one winds the other up. Not that there is anything one can do about it, it just is. And the other thing is, THEY ARE MARRIED TO EACH OTHER. I know how difficult it was for my father to have Mom in the locked unit and he would visit her daily. His said his heart hurt not having his wife by him. It was especially difficult at night. He was the happiest the last three weeks of his life when he and mom were back together.
So I know it will be hard on them-dementia or not. When two have spent their life together as long as your folks have, it is hard for them to separate.
I'm sure you'll need to let your mom see your dad so she will know that he is OK.
And just as you have taken care of your parents, you're taking care of your sister. you are Florence Nightengale. I only hope that she appreciates all that you have and are doing..but I know that she won't. In another week she will rear her ugly head again and snarl at you.
Make aure that you rest and enjoy your daughter and relax before the next wave hits...Know that we still have that towel stretched tight my dear. We won't let go for love or money. Oh debb- I ache for you....hang tight it's going to be a bumpy ride....we'll keep that towel snug.
hi deb, i feel so bad hearing this. this is where we put my mother with dementia. she is in a locked down unit. i hate it so much, but this is the safest for her. you seem to be such a strong person and you know what has to be done. when do we stop crying?
I think our parents that have been married for all the years that your mom and dad have been married like my mom and dad 59 years in March. They really believe in the vow they took many years ago "TILL DEATH DO US PART"
Some days it seems clear that they may just kill one another living in the same space BUT I also have witnessed how when mom is not here in the hospital my dad feels so lost without her. It is one of those things Can't live together anymore but cannot live without each other!!
It is the only way they know it to be. Dad taking care of mom all these years is his life. It is as if they have to breath the same air to exist in this world!!
Hugs to you Deb during this new level of the journey you are now approaching!! It is very hard !!
I am totally scratching my head but here goes..... Wednesday the facility staff thought it was the best for Dad to move him into the locked unit. Sister 4 called me in tears. I was supportive and said I would go back if needed. Sister 4 said they just needed to call the doctor for approval.
I get a call on Thursday about lunch time. The ground work I laid with the doctor on Wednesday leads her to believe it is manic episodes that she can treat with medication. She just needed to find one that is not dissipated through the liver because of his low liver function. When the facility called the doctor on Thursday she decided that she wanted to try a new medication first because they moved him. I don't know what Med the doctor decided to try but sister 4 promised to find out and let me know. But she is the one that is never proactive and waits until something blows up to do anything. I figured when I didn't hear back from her quickly... she was just sitting and waiting and dreading.
I had not heard anything as of today about lunch time so I called Sister 4 back. According to her... The facility has not called her and she hasn't called them. She didn't have a clue if Dad had his new meds, if there were any further problems, or what was going on Sister 4 said she might stop by this afternoon and check on them. It is supper time and I have still heard nothing...
In the mean time Sister 2 is supposed to drive 2.5 hours to be there Saturday, and planning on taking two grand kids and 3 great grand kids with you. Sister 4 was supposed to find out if that was ok.... and I finally washed my hands of that this afternoon and told Sister 2 to talk to Sister 4. Sister 3 has escaped!!... and I don't blame her.
I am going out to lunch with my daughter........
Love, deb
For now I am just marveling at the absurdity of the entire situation.
Deb you are handling this well, even showing a sense of humor. "Too many cooks" is my feeling: too many people in charge, no one having an overview of the whole thing except probably YOU.
I think you need the placque that I have on my desk. It says..and I quote;"Impossible? Nothing is impossible when you work for the circus!" Have you checked to see if the sign on the door to the home doesn't say Barnum & Bailey. Home of the Big Top? Because it certainly does sound like a 3 ring. Do you want my whip? I think you already have the boots. You just need the fishnet hose and the little black skirt to go with it and you've got it made. I have a black dog...doesn't do too many tricks, but she'll bark on command. Maybe we can get Lil' Deb's fat dog.... i do declare we have the makings of a whole act here. We could make some serioud coin!
What I want to know is who is going to straighten this out? I really don't have enough time for this...I have a baby quilt to quilt and I need to concentrate to get the lines straight and this will drive me batty! Can't #4 just make one decision for just once in her life and be proactive!
And where did #3 go to for heavens sake? She could have at least taken you with her...that is the polite thing to do, but no:she leaves and leaves no forwarding addy no phone amen! Perhaps she was the smartest of the group...
have a drink or two. you need it!
Yes, my life is a three ring circus on crack!!! I keep looking for the "this is all a joke" sign to pop up in the air. This is just one ring of the chaos... you should see the others hehe No... Sister 4 is incapable of being proactive. She just waits for it to all melt down and then cries. I sit on my hands until I see my opportunity and then I do what I can to fix whatever it is. Sister 3 has gone to visit her inlaws which is not on her list of top 10 fun things to do but needed a break from work (snowed in at the hospital for 48 hours) and our parents (who she dealt with for 2 days before that).
I had not even read your post IBake and took your advice. I decided if the ones that are there are no concerned enough to make a phone call then why was I stressing. A deep tissue message (I am so very sore today), supper out with my daughter and some of her friends, and two glasses of Sangria later, I was dead to the world in the best sleep I have had in weeks.
Today Sister 2, two grand daughters, and three great grand kids, are with Mom and Dad. We will see how that goes and I should get some feedback from Sister 2 on Dad's condition when they leave this afternoon.
Yes, Dad has slipped quickly and it is probably due to the AFib episode and/or heart med changes. His is a vascular dementia and that would make sense. By hanging around and "chatting" with the staff I found out that he has been wondering for a while... as far back as the AFib episode for sure. Until the Saturday he slipped past the staff and was picked up by the police it was "not an issue". More of that not being proactive stuff. Only when it gets sever enough for "family" to be called does Sister 4 know what is happening. She's not the nosey snoop that I am. You are right Martha, those that are there avoid and see bits and piecs. The doctor needs all the information possible to do her work the best and she was not getting it. I did what I could while I was there.... but I am not there now...... I have done what I can to inform, discover, process, and suggest. Anybody want pancakes!!! That's my next mission
Yep, I am doing just fine. It is what it is, I do the best I can with my crazy world, and keep my sanity in tact.
Thank you all, you are the best and the sanity I hold onto in this crazy world of mine. Did I mention that we just through daughter's car was fixed? It has another appointment Monday so I am "stuck" here. Sometimes being stuck is a marvelous thing!!!!!! hehe
. In another week she will rear her ugly head again and snarl at you.
It didn't take a week... it was only 5 days before I got the ugly snarling e-mail from Sister 4 I just looked at it and shook my head!! At least she is predictable lol
Dad is doing better. He still has episodes of aggitation but they seem to be further apart and of less intensity.
One of the things that the doctor did while I was there was to measure his oxygen levels when he was at rest and walking. It showed a significant drop in O2 levels when he just walked down the hall a short distance. We even discussed the possibility of oxygen therapy for him. So.... Sister 3 and 4 decide to take Mom out, and "because Dad wanted to go" they took him to the mall and then to Target!!!!
And I am the bad guy because Sister 4 doesn't remember that I told her that Sister 2 threw out the shredded sheets. There is no disagreement that they needed throwing out or that Sister 2 did it... but somehow I got thrown under the bus!!!
. She truly doesn't get my thought processes....
It is supper time and I have still heard nothing...
:she leaves and leaves no forwarding addy no phone amen! Perhaps she was the smartest of the group
