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Hi everyone. We all just don't know what to think any more. Mary still isn't where she was before the attack Thursday night. What do we do? Plan for the worse or hope for the best? They moved her out of icu. She has a sitter in her room around the clock. Doug went for 2 hours after work and came home looking defeated. At least a dozen times she said she was going downstairs to start a load of laundry and check on ray. And each time Doug would remind her where she was and then she wouldn't talk at all. 10 minutes later the same thing. He tried to get her to eat and she would only take a couple bites and pushed it away. Sitting on the bus waiting for elementary kids to be released my mind was racing. Here lays my mil laying in that bed. A woman who loves life. Cherishes her family. Loves her friends. Loves her church. Then I think of the woman who gave birth to me. A woman who wasted the life god gave her to live. Hates her family. Dosent want a friend. Then I wonder why? Why Mary? I guess this is part of the bigger plan? We now have what they call a case manager. Asking us questions. Does she live alone? Is fil able to care for her when she goes home. Poor ray. This is tearing him up. Seeing him crying beside her bed, begging her to calm down. I called him tonight and ask him to be honest with me how he's feeling physically. He told me he's tired. I told him no one is going to think badly of you if you skip tomorrow. Ray, she's in no danger. All of us kids have got this. Now I'm so glad I got him through the chemo. He is open to telling me how he's feeling. So when Doug came in we all got on speaker phone and discussed this. The others are going to suggest he take tomorrow off without letting on we discussed it. I could go on and on about her dementia, but most everyone has been there, done this, and doing this. Thanks for listening.

Pamelasue, I know what you mean. For me it's hope. You all give me hope.
Love you my friends, Lisa
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still praying for all the lovely people in this thread. you have no idea how much you women inspire me. God Bless you and your families.
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Hi everyone: Lisa, don't you just hate weekends and, even more 3 day weekends, when you have a loved one in the hospital. Good grief. I hope the next week, starting tomorrow, will be productive in assessing your MIL and getting info for the family. You know my heart is always with you and I think of you many times throughout the day and night.

My dad has perked up a bit. He is much better than he was a week to 10 days ago. He will eat more if I am there to feed him and the doc did discontinue the Lasix so his dehydration has improved. His chest xray did show pneumonia in both lungs, but he does not seem to be at deaths door right now like he did previously. Eh?

My brother, Robert arrived yesterday with his wife and they spent time with my dad yesterday evening and today. I didn't have to go today to feed him, etc. Brother did that. I wish they were closer and could do this more often. I'm so tired of being the only person to care for him. Plus, I know he loves to see his other kids.

Warren and I got so much done yesterday and today in our giant yard. It was so nice to just go and and turn into sweat balls and not think we had to be showered and someplace else in an hour or so. We just slaved away and got so much done. It was hard work, moving big rocks and bringing more in to place on a slope in our yard. Thank God for our tractor that can haul the rocks from where they lay to their new destination. If we can get all this rock placement accomplished and then bring in the 20 yards of mulch to keep down the weed seeds, we will be in hog heaven next Spring. The rocks keep the water from running down the slope. Keeps plants on top, middle and bottom equally watered.

Believe it or not, this is a walk in the park for us. We are just making adjustments and completing things that we have been working on for the past 8 years. It's so different than starting from scratch. It's not so overwhelming now, because we have accomplished so much over the years. Still, every year, we get older and getting this done makes our lives easier.

I'm so glad my brother is here and we can have these two days to move these flipping rocks, bring in more dirt, blah blah and at the same time know that my dad is happy and bro is spending time with him and feeding him. Warren has to work this coming week, Bro leaves Thursday morning. This was our moment, two whole days to concentrate on what needs to be done at home. Loved every sweaty hour of it.

Sending heartfelt love to each and everyone. Cat
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Survived 2 I have been encouraged by your courage both ways. You are doing the right thing that will save you and your household. Believe me a good family (husband and children) are to be cherished and nourished. You are really starting to live again. And, I am extremely proud of you. There is hope for all.
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Lisa take care I am so sorry for the news of your MIL and you know we love you and are hoping for the best for you and your family. We will hold you close in our hearts tonight.
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Hi girls. Hopefully we will start getting some real feedback from drs tomorrow.with the holiday it's gone slow. Her blood pressure is still up and down. I tried to prepare my fil, Doug, and sil's that she may go back to that darkness she was in. Well, she has. Not as bad as the second day, but the anger and resentment is there. She pulled off oxygen meter from finger and her heart monitor. Patrick explained to her if she didn't stop the arm restraints would have to be put back on along with the harness she's wearing. She called him some names. All I can think is lord please don't let her remember her behavior. She would be so embarrassed and ashamed. This is not the woman we love. They are hoping they will not have to sedate her. The neurologist is hoping to talk with her in the morning without drugs in her system. Emjo, hope you are feeling better. Cat, holding you close. Kimbee, ladee, Judy, Jeanne, bookworm, Kate, Austin, and everyone, love the kickass girls bunches, lisa
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Emjo that is one of my favorite verses also. Your Mom emails-wish mine did I love that delete button-now my mind has to delate things but I am getting better at it. I have been having too much fun visiting my friend Ursula -who was my best friend at our Senior Center- at her AL I am allowed to go to her activities and have been included in their activities -now we are doing brain teasers.
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((((((((((((((((((hugs)))))))))))))))))) Lisa - thank you for the update. Your neurologist's approach makes good sense. I think there is a farily good chance Mary will have more episodes. All if this is quite overwhelming for her. I am delighted that Doug saw his mum as herself last night. Is Ray fil? Getting him the help he needs is great. Although it is a very difficult situation, it does sound like Mary is in good hands, which is all any of us can hope for in a situation like hers. I agree you have a long journey ahead. It is comforting to me to know that you all will pull together,
cat - I so much appreciate what you wrote about death and dying and facing it alone. I will get back to you on that. Keep us updated about your dad.
kimbee - life is not getting easier for you either, is it? Sounds like some changes in our mum, and you are not yet over this bug!!!!!
austin - love the phrase -sharing our unwanted experiences - one of my fave bible verses is Romans 8:28 - in all things God works together for good for those who love Him and are called to His purpose
judy- glad to hear things are better with David - hope your mum is still way down the priority list
Hi to new and old - I have been lying a bit low with an ovarian cyst which is settling down, but still bothering me a bit. Apparently fatigue can go along with it, and it did in my case. Peaceful weekend here, other than over 10 emails from mother, some crazier than others, I will travel down there when I feel better, had to cancel the trip
I planned - looking after self!

Lisa, cat, kimbee, austin, judy, everyone - look after you - no one else will, and you need you to get through this life.
(((((((((((((((((((((hugs))))))))))) love and prayers - Joan
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Not ice. Icu. :))))
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Hi girls. Mary is doing so much better. And Jeanne, you are right. We spoke with her neurologist this morning during rounds. She first wanted to rule out any more threatening situation such as a brain tumor. She told us she works backwards by first ruling out the worse case scenario. And although Mary is back to herself, herself means a woman with dementia. Mary has given us numerous explanations why she is there. Cancer, constipation, and from 15 years ago when she sat on a cactus at the edge of her flower bed. Cat scan showed no tumor. They will not move her out of ice because she is a flight risk. Instead of straps, they have her in a harness. Doug woke me in tears when he arrived home last night. He was so choked up when he said mom is back. And he said they told him there is no guarantee she won't have these episodes while going thru all these test. Our main fear is her lungs now. Her cough is very wet. We are getting ready to travel a long road. Ray finally realized he needs help in and out of hospital. I borrowed a wheelchair from a friend, and we are going to buy him a walker tomorrow. He is so happy and relieved today.
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Just as a matter of information: A brain scan can provide useful information in many cases. That is why it is done, I guess. But many forms of dementia do not show up on such scans. Scans can be helpful but they are not a comprehensive diagnostic tool.
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Lisa: I am thinking of you right now. You've had lots of info about the neurolist (sp), but hopefully he should be able to do a brain scan on Mary and see where the damage is and how it affects her interaction with reality. Hold his feet to the fire and ask him questions. What else can you do.but gather information?

Kimbee: Thanks for citing me as the leader of blue tights and tuna cans. That may well be the highlight of my life, if only because I have met such wonderful women here and if my crazy jokes made you laugh, then my heart is truly happy.

Judy, you are just my soul sister nut case. I love you to bits too.

Regarding my dad, he is between two worlds. One of my brothers arrive tomorrow to see him. My sister will not be coming. My other brother may come later in the week. I am so tired. I can't be a peace until my dad is.

Lisa, I want to say that you should not look at my dad's situation and weave it into yours. My dad is not going to get better, his situation will only get worse. In some respect, the same is true of Mary, but I just hope you have more good time,

My heart breaks for you and it breaks for me too, I hope you will have more time with Mary and that her cognitive skills will improve. I want you to have that chance to talk to her and reach her. I am so sad for those who are old and their lives are coming to an end. That's where my dad is now and I just don't want him to suffer a long demise.

We are all struggling with these issues. Doing our best to keep them safe and secure, both mentally and physically. I have spent much more time thinking about how I will die and how I will have to take that journey alone. It's what I am seeing now and understanding in a much more personal way. It's something we all have to face.

No answers, but just my thoughts at this time. Love you all and so blessed to have you as friends. The very best of friends.

Love Cat...
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Madhouse, you have patience! I cannot see myself standing there for hours. Did you have a book while waiting? Or the TV on? Well, I admire you for being able to think through the problems and came up with a very acceptable outcomes on all fronts! It's obvious that I'm going to have to work on being patient and thinking "outside the box". Thanks for sharing your story! And Welcome to AC!!
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I really understand where you are coming from. My mother was absolutely horrible for the first year she lived here. She threw things at us when we would walk by. Stole everything and anything she found in the house. She said she would not move to assisted care and that she was the boss of the house etc...etc... One day I finally had it. I called the division of aging and they sent out a social worker. He was ready to remove her that very day. I just couldn't do it though, because they were going to put her in a mental ward. I call a behavior hospital and they admitted her for med changes and observation. For the first week she was horrible. They let her know she was not coming back here unless her behavior changed. By the forth week, she had made so much progress, I was astounded. I brought her back on a trial basis, It is now two years later and I am not saying it is all peaches and cream, but she does know now that she must be respectful and reasonable or out the door she goes. I have learned to distract her and to just take a deep breath and skip right over the crazy stuff. I lock up the pills and just pretend like she did not even say anything when she demands them. If she won't take her meds when she is supposed to, I have learned to not say a word, I just stand there until she does. At first it was hours that I stood there silently waiting. Now she just takes them because she knows I won't fight about it and I won't leave until she does. It has been hard but I can see major progress when I look back
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Lisa take care you know we all love you and are there with you in spirit -I am looking at the same moon as you are.
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Marys nurse Patrick called an hour ago. Mary was lucid and asked for Doug. So Patrick called dougs cell and said mom wants to talk to him. She asked where he was? Doug asked if she would like him to come see her and she said please. I'm scared. Wow. Patrick got back on the phone and told him they removed the restraints from her arms but have put a strap across her body. And he warned him she could change from lucid before he got there. If that happens arm restraints would go back on. She still thinks she is someone's house. Waiting to hear from Doug.
Thanks for confirming the neurologist for us. I've called sil's and told them.

Cat!!! How is dad doing? Any changes. I've thought of you often the past 2 days. All my prayers I've included your family. Love to all of you my dear friends!
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OOOPS: in that regard, some things that are helpful are known, and they are working on improved treatments like crazy. We love you and are here for you and your family through all of this. We are as Judy said, glad to be able to be comfortable here with each other--people you are really glad you know. Judy, I feel exactly the same way. Those of us here have learned from the true grit of the trenches. No shame in not knowing about something thing here. None of us did, until we had too. As Austin says, we are thankful to be able to share our unwanted experiences. Tell your SIL I can't imagine a better family to be in Mary's corner, taking care of her and loving her and FIL through this. We are crazy about you Lisa, and Doug, and are all thankful you have had that family to love and care for you. You have so deserved them! We are praying from afar and appreciate the updates. Hang in there our special friend: we'll get through this together. All of us, unified as one amazing tuna can kick ass force, thanks to our Cat. Love, hugs prayers for all of you, and restful sleep. kimbee
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Yes, Lisa, the Neurologist would have ordered a cat scan to see if the see anything unusual in he brain, including past stroke, or TIA's-mini strokes, dementia (not sure if on cat scan or functional mri only-tangles of neurons-messed up electrical circuitry that controls function, where they are located determines which functions are affected, or atrophy-shrinking of the brain matter, which is equated with "dementia." Prior "infarc's" or strokes and TIA's are associated with Infarc demential (as is hx of uncontrolled hypertension-which of course is what leads to the TIA's and stroke. Infarc dementia is also usually seen as a step-wise decline over time vs. Azlheimer's type which is more associated with the atrophy, and a more gradual and continuous decline in memory symptoms. Mixed is a combination of those two types-some of each. Lewy Body dementia, has features of both Alzheimers, and Parkinson Disease and has brain differences associated with both diseases, and usually some visual hallucinations and sleep problems. Functioning and symptoms seem to fluctuate a bit. Jeanne is our resident expert here on that-I am just learning, but am feeling that is what my mom has. They are evaluating on-going to address the problems and determine if that is what she has. After learning more about it, I am convinced my FIL had that type, although he was dx w/ "Alzheimer's type". It is all a bit subjective for them to diagnose though. A diagnosis is not truly confirmed unless a post mortum autopsy is performed and the brain tissue is studied at that time. Lisa, when I diagonsed patients with serious mental illnesses, they and families were always sad, but also relieved to finally have a name for what was wrong, and a path to begin following to improve circumstances, and a way to begin talking about things. Not that anyone wants to have a loved one diagnosed with any kind of dementia, but it allows you to begin to deal with it. We all wish the options were better, but they know more than they used to,
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((((((((((((((lisa)))))))))))))))A neurologist deals with anything to do with the brain and nerves. That should include assessing dementia. I am glad Mary was better when you arrived, but sorry she got worse again. It is good the doc is aware of her high blood pressure now, and hopefully she will agree to treatment for that, and for her dementia. It could have caused her to have a stroke. I am so glad there was no damage to her heart. As others have said, being in hospital can trigger some weird behaviours. I have seen that in mother after surgery, and decided to stay out of the way as much as possible till she got past that stage. Laughter is a great stress reliever - something you and your family do so well.
You all have been going through so much these days. Hope fil is holding out, and his chemo has been successful.
((((((((((((((((hugs)))))))))))))))))) and prayers for everyone This agng business is no fun - not for sissies as Bette Davis said, and thanks for the update - keep 'em coming!
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My husband was diagnosed and is being followed by a behavioral neurologist.
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Lisa, my mom was seen and diagnosed with a neurologist whose interest was dementia/parkinson/alzheimer diseases.
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Hi everyone. We are home for the day. Cat, about Ativan. Dr told us today she will not be going home on this medicine. She had one dose when we left yesterday. When we arrived at the hospital this morning she was my mil again. Still with the same dementia. But without the aggression. Dr came in and spent 40 minutes with us. Blood pressure is wicked. Gone untreated he guesses for years. No surprise there. She won't go to drs. He's called in the pulmonary dr. Told us he's already ordered test. She was taken for cat scan today by orders of a nurologist. (spelling?) he has promised us she will not be released until every concern of ours has been addressed and we have our answers. He said there is no doubt about the dementia and we need to put a name on it. From my time with all of you, I know there are different types of dementia. The five of us sat there with tears streaming down our faces. I can't explain the relief we felt. He listened to us. So we went back in and sat with Mary and all he'll broke loose. She had slipped back to where she was yesterday. They had taken the straps across her off and loosely strapped her arms. Well she got them off while we were with dr and pulled her cath out. Screaming again she was going home. So for the second time she has been given Ativan. It is obvious it just worsens when we are there. So at 3 we left. We took fil to dinner and my sil's and Jen joined us. While we talked about what is being done for Mary, we got to the neurologist. We kinda went quiet and looked at each other. Soooo, I told them I was coming straight here to find out. So girls, please help us? What exactly is, or what would one be called in for? Is this the dr who will be involved with diagnosing her dementia? I laughed at my oldest sil when she said," or lord Lisa, what will those women think? That poor woman laying in a hospital bed has dumbasses like us caring for her?" so that started some laughter, and another round of lit's.
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Pain meds, pain itself, new unfamiliar surroundings, unfamiliar noise, too many faces and voices... it all contributes to this,,, and keep in mind we have had two full moons this month... S has been convinced he is not home for a week now....too many strange faces, there are 5 of us for round the clock care....M being in the bedroom, not where he can see her all the time, just too many changes for him.... I'm stressed, M is stressed and he picks that up too....so, Lisa, MIL will settle down once she is able to get back into her home and familiar surroundings.... she may never go back to who she was before, so be prepared for that also, and maybe she will..... but the fact she had no heart damamge says she wasn't without oxygen for too long....
We are all so sad that this is happening.... but at least the dementia is being addressed so one less thing to worry about on her return home....
Are the Dr's giving you any time line for her return???? And how is Doug and your FIL doing with all this... Doug must be devestated to see his mom like that.... tell him we are sending hugs and prayers for him too.... keep us updated...
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Beck it is good to share experiences especially sundowners it is very hard for families to see it happen if they do not know about it -even younger people get SAD in the winter which affects their mood. I saw sundowners myself with one of my husbands roomates one time when he was in rehab-the man's wife would get very upset with him-I explained what was going on but I do not think she believed me at the time that was what it was that was happening to him.
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Lisa: I have heard a number of people who are caring for AL family members that Ativan has a bad affect on them Maybe others who know more about this can comment. Jeanne Gibbs, do you have any insight to Ativan and dementia patients?

Cat
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Lisa...first let me say how sry i am that u r going thru such trauma with ur mil. I have read wat others have shared with u, n i jst wanted to share my own experience with u that i went thru wen dad was hospitalized twice in these last 11 mnths.

He was in the hospital, first go around, for a hip replacement in Oct. of 11.....This was my first experience with the term known as sundowners syndrome. He was so disoriented n confused, that i didnt recognize him as the dad i knew. Then, his behavior became extremely violent n aggressive to the point that he had to b restrained. He would say terrible things to me n mom, n i remember being so distraught, thinking that he would never b the same. I asked the dr, wat meds they had put him on, thinking that it was the drugs that may have been causing his behavior change. They told me they had given him Adivan, for anxiety, n a drug called Diluadid (spelling??) for pain....With agreement from his dr...we took him off the diluadid, n put him on a lesser pain med. He seemed much better after they made the change, but the sundowners continued...which i understand is very common in many patients who r hospitalized. I remember coming to see him one morning, n his arms were black n blue from the restraints. He had no recollection of the event.. I, on the other hand, was devastated. He was sent home with a prescription for Norco, another pain med. I noticed, that wen i gave him his dose, he would display similar behaviors of aggression. I called the dr...n said..."I'm not giving dad this med anymore. It's not safe for him or others around him." Dad ended up not taking anything stronger than Tylenol, bcuz he jst didnt feel he needed anything stronger. Between the months of Oct. n March..dad dislocated that hip replacement 6 times. Every time requiring ambulance transport to the hospital to do wat is called a reduction. At the time, i didnt realize that the ER was giving him dilaudid for the pain before reducing the hip back in place....once again....extreme confusion n agression returned. I finally told the ER staff, whom i got to kno on a first name basis, bcuz we were there every 10-15 days, that dad was not to have this drug, under any circumstance......Then comes the end of March, n the decision was made to put in a constrained hip, which is basically scewed directly into his pelvis, so that he would not dislocate. That hospital stay was the most difficult to witness. My sister flew in from Colorado to b with me, bcuz i was so scared to go thru another surgery without much support. Once again....dad shows severe signs of sundowners n extreme aggression. My poor sister didnt expect any of this, bcuz she had not witnessed him in that state before. I felt bad for her, bcuz dads aggression was directed towards her...He would say awful things to her, n i would jst do my best to diffuse it. His face changed, his eyes changed...he look as if he was possessed. Once again...i questioned the drugs they had been giving him....this time, i was Adivan n Norco....After talking to his dr..the best course of action to take with dad was to get him home. The sundowners episodes were completely overwhelming everybody, including the nursing staff. My sister n i spent 3 nites with dad, never leaving his side, to try to help keep him calm. I guess wat im babbling about is...the drugs that dad had been given were responsible for the dramatic change in his behavior, along with being in a small, white room with different people, always coming n going. It was jst too much . Once we got dad home n settled, he returned to his normal self (his "new" normal..that is)..His medical records indicate that he cannot have Adivan or Diluadid . To this day, dad recalls nothing of his stay in that hospital, although he recently awoke from a nitemare where he remembers kicking a nurse...which he did...n he was very upset about it for days, but we got thru it.

I dont kno if mil behavior change could b caused from the meds they have her on, but it is worth looking into, but i've also learned that, sundowners alone, can completely change a persons personality. I dont kno if this is of any help, but i jst thought i'd share my experience with u...My thoughts n prayers r with u Lisa...
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angiiiii, you will be happy to know that Lisa's mother was successfully evicted from Lisa's home. There has been a lot of drama and trauma since then, but Lisa is strong and is coping amazingly well. She gets great support from her in-laws. Right now her dear mother in law is in the hospital after a heart attack, and the signs of dementia MIL has shown recently are greatly intensified.

And that is where things stand now.
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I just love you to bits, Cat! I just love this thread too. Well, not the present situation that Lisa and her family is in, especially now, but this thread is a comfortable place to be. Like a room full of people that you feel lucky to know.
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Judy: Thanks for the smile. Haha Love Cat
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Dear Lisa, sending today's prayers and peace your way. Kathleen
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