I am at my daughters and finally had a few minutes while she was doing homework to check in.
My visit with Mom and Dad went as well as could be expected. Mom was in relatively good humor. I could tell that she was not as "aware" as she has been on previous visits. Dad's bizzare behavior was less but it's obvious that he has slipped as well. I do know that he was out of bed wandering the Thursday night. I put him to bed with his blue bed socks on and put his shoes beside his chair in the den. When I arrived back at the facility the next morning he was sleeping but he had on his brown regular socks and his shoes were beside his bed. So the wondering continues.......
I did find out that Mom had another mini mental done recently. Her score was an 18 out of 30. A year ago she scored a 25.
When I left them they both had haircuts, showers, been out of the room for walks, and were in good humor. The next day mom was on the phone wanting the van so they could go home before nobody every came to see them. Sister 2 has the van so she got the first call. Sister 3 admitted that she didn't know how to talk to Mom. (the three of us were together at Mom and Dad's cleaning out closets). Sister 4 was at a birthday party just minutes away from mom and Dad. So I called Mom back and calmed her down with my normal blah blah blah. Sister 4 indicated that she would only go over "If she was called by the facility".
I called Mom on Sunday and she was in a very good mood. Sister 4 had stopped by for a few minutes earlier in the day. A moment of calm before today. Today mom had tried to leave the building "going home" on two separate occassions. The facility finally called Sister 4 tonight because Mom and Dad were both in wellness insisting that they were going home. Sister 4 did get them back to the room and into bed. Now it is BOTh of them that is wondering.... Even sister 4 agrees that a locked unit is necessary. Now it is just a matter of where. The facility close to where they are now with a locked unit will not be completed until the end of April. The facility I found close to me is checking into what rooms are avilaible there now. It's going to be a matter of time I am sure.
Cleaning out the house went as well as could be expected. Sister 3 continues to talk about equital distribution and didn't want to make decisions with sister 4 not there. So I picked up the phone and called sister 4. I would ask if she had any interest in a particular item, determine if either of the other two sisters that were there wanted it, then make a decision as to what was going to happen. We actually made some progress. I have an extensive inventory to send out. I have told sister 3 that she needs to talk to her kids (that are not dealing with this well) and tell them to make a prioritized list or do without. Then the four sisters will come to some decisions. We are further along than we have been. I did pack up a few things that sister 4 wanted and sent them to her. Somewhere along the way I broke the ice and actually got an update on the parents tonight. Not sure how long it will last but......
I have just decided that it is time to make some decisions. Mom is on massive doses of anti depressants, anti anxiety, and anti psycotics. The last med added was Depakote. According to the doctor she should be a zombie but instead she is still head strong determined to escape from the building and go home. I am returning an e-mail tonight requesting that they once again consider stopping at least the namenda if not both the namenda and aricept. She has been on both for 2.5 years, and that entire time she has been in mental melt down. It's time to determine if that is the cause. We were told "she will have to get worse to get better"... so why is she on meds! It just doesn't make sense to me. I am pushing for another clear out the house date next month and to have Mom and dad placed in a locked unit as well.
I'm doing well. I am tired but enjoyed my chilly, windy, hour on the beach this afternoon. It renews my soul.
I have noticed how quiet it has been here since I left. I do hope all are in a good place at the moment. How about some updates on everybody else.
I didn't know whether to start a new thread or reply to your's. It has been quiet, i agree. Thanks for your update. I envy your hour on the wind swept beach. I've been up to edinburgh this last week. We have been sorting out our mother's stuff. We gave all her lovely clothes to charity. We joked that if she returned to normal thro' some miracle, she'd go ape if she checked into her closets. She is now totally bedridden and needs everthing done for her. She can only eat liquidy foods in small amounts being fed by us. I noticed that her breathing is becoming laboured, and she misses several breaths. Could this be a "shutting down" of the autonomic system? I still will be glad when this is over. I know that it will be a new set of emotional turmoil, but it guts me to watch her. It is like dealing with a six-and-a-half stone baby. Take care deb.
I was talking to my friend, whose sister is a in late stage of Alzheimers, about just this sort of thing. Getting worse before you get better is a phrase the caregivers use. It means that once her ability to think ahead and plan (for an escape, to call her daughters and be taken "home," to make loud protests and complaints about something) is gone, she will be 'better' -- that is, easier to handle.
This happened to my SIL's mother who also died of Alzheimers a few years back. She had been a bitter, angry person, but after reaching the later stages she became docile and calm. Many people remarked on the difference. It was like visitng a different person. "Better" to take care of, but worse in perception, thinking and planning. That's probably what they meant. Meanwhile they keep her medicated in the hopes that it makes her easier to handle when actually, many drugs CAUSE odd or even violent behavior. It is a paradox.
We were gone for a few days opening the lake house and working on things that needed repaired. Husband works outside and I work on the inside getting things back to normal. He painted my ceilings, I say MY ceilings, because he thought they were just fine, I didn't. LOL He teases me by telling me "Just don't look up and they won't bother you"! He is replacing the retaining wall by the lake, hard job but he enjoys it. We're enjoying his retirement and spending time together. Long walks in the evening are so nice at the lake.
When we returned I also noticed things were quiet here. Good to hear from you deb. I've been hoping that things were going well with the clearing out of your parents home and hoping also that your Mom was doing better. Sorry to see that she is not doing very well.
I wish I could say that Mom is better but she isn't at all. I couldn't tell you how many calls were on my machine when I returned home. There were too many to count. I called her everyday from the lake but that doesn't matter, she still calls here thinking that I'm home. Her short term memory is about 2 minutes long these days. She can't answer any questions because she doesn't remember what has gone on during her day. She just wants to know how long she has to stay where she is and why she can't remember anything?? She is totally confused most of the time now and very childish. I know she will get worse and it sounds terrible but I pray this stage passes soon until she knows nothing. I also pray that she remembers her daughters when this happens. Grandma knew that we were someone she loved because she always hugged us and held our hands when we were with her even though she didn't remember our name. If I think about Mom too much and her rapid decline it leaves me weak in the knees and I think my heart is going to explode from the sadness. I love her so much and there is nothing I can do to make her what she was before..................Sis and I are taking her to the hospital on Thursday to have the foley put in place then we will bring Mom here and take care of her for 24 hrs. to collect her urine. Then back to the hospital to have it removed. She is not going to understand this I know and its going to make her confusion worse when we take her back to her place. Oh well, we do what we have to do and hope for the best. This is not going to be easy on any of us and I have a feeling Mom isn't going to understand any of it.
Anyway ladies thats whats happening here at the moment. More of the same just a different day.
Oh Chris, My heart hurts for you. I know how much it hurts. I know that the hardest thing was hoping every time that Mom would know me, knowing that she wouldn't. Sigh. It torn my heart into little pieces that bled painfully and finally knit itself back together when we flew home. Only to start over again at the next trip.
Deb, I'm sorry to heara that both Mom and Dad are wandering. This is only getting worse isn't it? You Mom is not taking this well, no matter what anyone says. It's almost too bad that we can't find a memory eraser drug at this point in her life, isn't it? Something that would calm her down and remove that home memory so she could rest comfortably. It certainly it time for a locked unit..that alone will cause issues, but it will be so much better for all concerned, especially your parents. I cannot believe it has taken #4 this long to realise that your parents safety is at stake.<<<shaking head>>>
Hi Deb, just returned the other day. When I read your update, it makes me so sad that your parents still want to return home. Do you think they know their house is being cleaned out and up for sale? Do you think that is why your mom was trying to escape?
I understand how hard it must be for you and for your parents as well.
I remember a few years ago when my mom was at her meanest and people would say it would pass and I didn't believe them...well pass it did and now I have a sweet docile mom who can't remember minutes after she showered if she did it or not but at least the awful stuff has passed....FOR NOW.
I can only hope that soon for your mom too. Sometimes it is a blessing to forget...we just wish they could forget the bad stuff and remember the good. But unfortunately we don't get to choose.
And that you got as much done in the house this time around is amazing..to use one of my mom's favorite words.
Chris, I am glad you got away for a while. You truly needed it and despite all the messages Mom survived your absence. I truly do hope your mom finds peace soon. I so understand how opressive it is when Mom is distraught.
Martha, I understand getting worse to get better. I truly believe this is the case with Mom. I don't wish her any ill will, only peace. The same peace I wish for Chris' mother.
IBake, I think we finally reached the point that there is no option other than a locked unit. It is just a matter now of which one. There is a spacious two bedroom unit in the locked ALZ unit of the facility I found that will be available as of Monday. Mom has been leaving the facility daily to "find the van" so she can take Dad home. Yesterday, Mom went out the front door to find the van and was brought back in the building. Later she went out the front again while Dad went down two flights of steps and out the back door looking for Mom. His bracelet alerted the staff and they found him outside the door trying to use his room key to get back in the building. They had to bring Mom in kicking and complaining. Later in the day she took Dad to wellness and demanded that they take her to the van which she was sure was just outside so she could take him home. Needless to say Sister 4 was told, they HAVE to move to a locked unit. They do not have the necessary room for both of them to be together so they have to move to another facility. Sister 4 is checking out an option, but I have one in my pocket. We will see what happens.
On another front. I finally convinced Sister 4 to ask the doctor about taking Mom off the Aricept and Namenda. She assured me it would never happen but... the doctor agreed. She said it was obviously, from her recent MMSE, that it was not doing what it was supposed to be doing and it could be contributing to her aggitation and confusion... so she thought it was a good idea to stop the meds. She is also stopping her calcium and prilosec to see if that might help. YES!!!!!!!! So as of today she is off all four meds. Now we see what happens. At least it is trying something different. I don't know if we will get worse to get better or just get better or stay the same but we are doing something......
Thank you meg..... your words do give me hope that this will pass.
Dorri... Mom had NO idea we were even at the house. She actually called sister 2 about the van. Gotta love cell phones. Mom wanted to talk to me so I waited a while and called her back. She said she told sister 2 not to call me. Little did she know that sister 2 was standing right beside me while I talked to her just like I was right beside sister 2 when she talked to Mom. There is absolutely no way we would let Mom know we were at the house let alone cleaning out her stuff!!!
Sister 4 is absoutely resisting me bringing Mom and Dad here. She has not said as much but she's finding every reason in the book not to let them come here and it did get her off her duff to find new placement there.
I do think she will be surprised when Mom and Dad move. Where they are now calls for family assistance at the drop of a hat. The last time, Mom and Dad were in wellness and didn't want to go back to their room. !!!HUH!!! Why should they call the family to walk them back to their rooms? Mom's crying and they call the family. Mom's upset because the dryer doesn't work and they call the family. This is a facility that is advertised as an "Alzheimer Care Facility". When talking to the facility I found, I ask specific questions about how they deal with upset, when they call the family, and have actually seen what I was told in practice. There was a lady upset when I was there today and I was pleased with what I saw. I was also pleased with the answers I got. I also talked to family members. They don't call family to do their work!!!!!
I have missed all of you while I was gone but it has been a productive time. We got a lot done in the house, the decision to move Mom and Dad is done, Mom is off four medications, I enjoyed my visit with my daughter, and I have the right room for Mom and Dad available.
Your trip sounds tiring but productive. Rest up friend it sounds like its going to get worse before it gets better, if thats possible. I'm so glad they took the meds away from your Mom. Maybe she will calm down a little bit now? I feel so bad for all of you because she sounds just miserable and home sick. Thats what Mom says now, constantly, "I'm home sick". So sad when she says that. I ask her what she feels when she is home sick and she said "I miss my kids being here with me when you were all little girls". Now things make more sense to me when she gets upset. She misses her old life when she was raising us girls. I miss my kids sometimes when they were little and I loved being a Mom. Easy to understand why she is sad so much of the time.
Anyway today is the big day for us. Mom is going to get the foley placed and then we'll come here for 24 hrs. then back to the hospital to remove it, along with 24 hrs. of pee we collected!!!!! This should be interesting........
I want to wish you a belated HAPPY BIRTHDAY friend. Sorry I forgot the date. I pray for you that everything works out and your parents will be calmer and happier very soon deb. Maybe things will get better when they are moved and she can forget that dang VAN! She's a tough cookie isn't she?
Wow, sister #4 agreed with something? I sure hope that keeps up. It will make your life easier. I'll keep my fingers crossed.
glad that you're back. you were missed. You did good with the house and dealing with all the sisters.
So Sister 4 agreed to do something, she's probably tired of the phone calls! after all she just sits by the phone and waits for them huh?
Well, the other thing that was written also disturb me. You found a place near you and Sister #4 won't allow the change, preferring instead to find a place for them by her (I guess?)
This is so she can continue to play the martyr. If there is more emotional support around if they got moved to the one you found, I'd rally the troops and force the move. Sister 4 wants to be the end all to claim all the glory. If that's the case, let her have all the pain of the phone calls, and dealing with the crisis of the moment.
that's my side and I'm stickin to it!
love you all
Chris, I do hope the hospital visit, home stay, and results of the test are all positive. Yes, you are going to have your hands full but glad you had a weekend at the lake before. Take care of yourself!! You have to do that to be able to take care of Mom. How's the knee doing?
Sister 4 didn't have a choice. She was called into the hall by the care manager and told that they needed to be moved. (Which was something I have known and voiced for a while). As I have said she is reactive rather than proactive. Regardless of where they move, I think this move is for the best for both Mom and Dad. They are both flight risk. Where they are is not contained enough to keep them in the building and their repeated escapes are dangerous. So sister 4 is not agreeing with me.... she is doing what she has been told by the "professionals".
Chris, if I never hear the word "VAN" again it will be too soon!!!! That is their transportation "HOME". I wish it was a magic van that would take them to another time and place when their minds were healthy. That is what they want. Your Mom and mine must be kindred souls. Mom thinks if she can just take that magic van home this all the confusion that is in her head will go away and life will be what she remembers. A happy home with Mom, Dad, and four girls all smiling and laughing. That is what tugs at my heart as well but there is no magic van !!SIGH!! My mom is absolutely one tough cookie with a stubborn streak that is too wide. There has never been anything docile about her. She just doesn't have a logical direction for her efforts any more.
Caring, you are spot on about sister 4. I have given her an out. I have found the place and given her the option. I have given her the logical arguments for bringing them here. If am not going to fight with her. But if she decide to do it her way.... then she can just deal with it.
I honestly believe that once they are moved there will not be the continual calls that we are getting now. I understand being notified if Mom or Dad get out of the building but I don't understand being called to come to the facility if mom and/or Dad wonder down to wellness and want to know where the "van" is. If Mom comes out of the room crying, give her something to do instead of taking her back to the room and calling family to come "fix it". I truly believe that Sister 4 has not only allowed this but encouraged this. Time will tell.....
Not a good day for Mom.... She's confused because she can't figure out how to get all her stuff back home without leaving anything behind. All "those people" are just out there playing around. She guesses she just needs to call Two Men and a Truck. Then she talked about Dad getting lost and she has to go find him. But they would be ok at home. She's just tired of sitting in that chair and nobody coming to see her. Yet she won't get up and do anything. Anything I suggest is a bad idea. She guessed Dad would die first, he's 9 years older than she is with a bad heart, and maybe she will make a decision then. She talked like it would be tomorrow. Then she was back to the van, which has to be in the parking lot. Mom said she thought she would get out of the room and go look for it. !!ARG!! Sister 3 walked into their room about that time so I did a hand off to somebody that was physically there.
I can't wait for this move to where ever it will end up being. They are at the end of a long hall, too far away from the activity. Other than the sisters and the med techs they don't see anybody. She will not leave Dad's side and he is happy sitting in his chair. Verbal cues to do something different don't work because of her auditory input deficiency. I do believe part of her problem is bordom!! Being in a different environment, closer to the "action", with caregivers that coax her out of the room may be a godsend. I hope!
My goodness, I can barely keep up with all the things going on with your parents, how tired you must be my friend. God bless for you for all you do for them, no matter how tiring, you always have their best interests, and care in mind.....not to mention dealing with Sister 4.
Sending you big hugs, and hoping and praying that whereever your mom and dad end up, it will be the best solution for everyone, and that things will work out as they're supposed to. I guess that's what we all need to believe in right?
Oh my goodness. It is just exhausting for you I am sure. My mom only complains sporadically (right now) about wanting her computer back. HAH! SHe can't even turn one on anymore. And she wants the checkbook back from my son, her grandson. But it's not constant like with your mom. She was like that a year ago about being handed her meds and I remember how stressful that was so I can sort of understand..I am a nervous wreck waiting for the other shoe to drop here and you have TWO to deal with..
Sister #4. Oh dear. She's hanging on for dear life, isn't she. I'll bet she is terrified of losing her parents (aren't we all) and is afraid of sharing them with you all. They are HER parents. She sounds like a little girl. Sad.
Today I am just trying to hold it all together. I called Mom and she was so very confused. She had a hard time understanding anything that was said. But she brought up going home, the van, and three men and a truck. Then she lapsed into silence. As hard as I tried it was so very difficult to talk with her. I finally just had to hang up. Dealing with the move, Mom getting worse and Dad sleeping so much, cleaning out the house, tax returns, having yard work done at her house, talking to the guy that wants to buy their house, a bad cold, four days of rain, no bicycle, and on and on has just taken it's toll today.
I thank you all for your kinds words and caring. It's days like today I realize how much you all mean to me.
I've been wondering about your Mom and Dad. I was thinking this morning that I would write a short note and ask you how things were going. Now I know and I'm so sorry deb, I know that feeeling of being overwhelmed at times. There isn't enough of you to go around, is there? You need some peace of mind and thats not possible at this time. Boy, do I understand dear friend.
I will tell you what you say to me.......one day at a time and one problem at a time. If they only came one at a time I could handle them but they don't. Problems and worries seem to come in waves here and then there may be a few days rest and thats not enough time to catch my breath until Mom has another "problem". It sounds like your having a wave of worrysome times and with a cold and no bicycle your in a funk lady. Not that you don't already know that and thats OK too. Right?
I could tell you some funny stories about Mom during her 24 hr. urine save. She kept trying to get up from the lounge chair and we'd ask where she was going "I have to go pee". Mom you have a catheter....."A what"? Look whats hooked to you. "Now how did that get there"? This only happened 30 times at least and it came as a big surprise every time we told her. It was exhausting and it took both me and Sis to handle things here but we did it. We should have the results next week. I can't describe to you what it was like when she had to go potty with this thing in place. We made light of it and it took both of us to achieve our goal !!! Sis would say "Oh Lord, Mom has to go poop again Sis. Lord help us"!! Thank goodness the nurse put special taping on the tube and then hooked it to Moms leg or it would have been gone. She's fast when it comes to pulling at things!!! We considered not feeding her anything but she didn't like that idea. LOL Mom loved the time we spent together but Sis and I went to bed very early that next night, very early.
Our granddaughter spent the night and we popped some popcorn and got ready for our movie when I went to the kitchen for napkins and promptly fell over her shoes right on the ceramic tile.........on my bad KNEE!! I couldn't believe it when I felt myself go down I thought "Oh no no no no"!!!! I put ice on it right away and its not too bad this morning. I love it when my husband asks questions like "What are you doing"???? after I fall. "What am I doing?? What does it look like I'm doing"???? We had to laugh. Last time I fell was at the lake and I slipped on a huge nut but my margaretta survived, remember deb?? Mom said I move too fast and I don't look down.....she's right I guess. I'm not use to shoes being in the middle of the kitchen floor. Cayla felt bad but I laughed and told her that it wasn't her fault at all. I had told her to put on her slippers and so she did, right there in the kitchen. Oh well, we'll see what happens with this darn knee soon enough.
The snow is beautiful this morning but it'll be gone soon. We got quite a bit last night. Isn't it supposed to be "lake time"?
I pray things go better for you soon my friend. I know you have alot on your plate with the move coming up. It sounds like thats a sure thing that has to happen. Hold on friend its going to be a bumpy ride but you'll make it though this, you always do. I'm thinking of you and praying that things will go smoothly for you and your family. Big (((((HUGS))))))
I too understand your feelings of being overwhelmed......and you know what? I think it's important to allow yourself a few moments of weakness now and then....it's exhausting being "strong" all the time. We're only human, arent we?
In those moments, when I get tired of "managing", and I just want a "break" from it all.....I sometimes have a cry, maybe a little one, maybe a big one, depends on the day, and then alot of times I come here, to find my friends, who can always offer something that picks me up. Take some time for yourself to take that little break, because holding everything inside all the time, is too much for anyone. Afterwards, you'll get back up on that bike, and start riding again......but you'll feel a little better for giving yourself those few moments.
Oh no Chris, not your knee again!!! Yep, I remember the saved Margaritta Some things are just tooooo important to lose!! I do hope the knee recovers as well as it can. You definitely sound like me. Moving way too fast and not watching carefully where I am going. I took a similar spill recently after a trip back home. My foot got tangled in a vine that had grown into the side of the carport (love my Confederate Jasmin but it is out of control) and down I went. That was not long after I fell over a piece of plywood covering a construction hole in a side walk. When you start scraping scrapes and bumping previous injuries... you know you are in trouble.
Glad all went well with your Mom's procedure. I can imagine Mom and the cathater. Oh my what is that! Why can't I go to be bathroom? Over and over. Bless you. You need some down time after all that as well but it sounds like you handled it well.... and I hope you got a good night's sleep.
You are right Caroline and Chris, it was just one of those days and I needed somewhere to vent.... tag you are it. This cold/allergies, sore throat is kicking me. It's my eyes that are aggrivating me more than anything. They are filled with rocks and won't focus. The sun finally came out today but it is windy. Biking in a 20 to 30 MPH headwind is not fun. I may try it for a short distance anyway if it will warm up a few degrees.
I think what really got me yesterday was all that others are NOT doing. The inventory that was done last weekend at the house is on sister 2's computer. It's been a week and I still don't have it in my hands. I have ask sister 4 about Mom and Dad's move status, and got back nothing. I needed the tax returns finished by Monday, and that's not going to happen. Sister 4 commented to one of Mom's friend that we were going to eventually put a "For Sale" sign in the yard. That got back to the individual that I have been talking to about buying the house. Then I had to explain to my potential buyer that we were not selling it out from under him. Sister 3 and 4 organized Mom's closet, but the didn't take the size 8 shorts out. Mom is in a size 12 now. She doesn't need clothes she can't wear in the closet to confuse her more.
Then the phone call, not being able to do anything long distance, the lack of information, the passive resistance to Mom and Dad's move, and just an overwhelming feeling of not being able to move the situation forward. The snowball ran over me but I am shaking it off and getting back up
I have give up on the tears or just shed too many Caroline. I have held it all in for so long I am not sure I could let it all go. It might swallow me up and not let me come back. My friend accuses me of hidding under a rock when the burden gets too heavy. I do that, but mostly I just turn to doing something for somebody else to take my mind away from myself. So I wrapped myself up yesterday in helping a friend deal with the breakup with his girl friend. It was past bedtime, when I came here, that I let any of it go. For this place I thank each and every one of you
Thank goodness we have this "sanctuary" we can all come to, on our good and bad days, strong and weak days, god knows we all have them. Thank goodness we have each other to give advice and support to, and a place to come where people "really" do understand.
God bless you Deb for being the person you are......when I am feeling overwhelmed, I usually "retreat". You say your friend says that you hide under a rock, I obviously dont know you as well, but I am not surprised that you spent this day helping a friend, because that is you. I think that was the wisest thing you could do based on feeling you couldnt do anything to help your own situation that day. At the end of the day, it feels good to help someone.....you are one of the strongest people I know dearest Deb.......but every once in a while, even you deserve a day off. How about dear friend, you just do what I am doing, and try to take those "baby steps" with letting things out.....we all know how strong you are, and for those moments when you need to vent, you come here, and we will be here for you, waiting with towels. I know everyone here loves you, and we want to be there through all of this with you....