Dad seems to be holding his own and the meds are working. As far as I know there have been no more hallucinations or episodes of wandering. But he is sleeping a LOT.
Mom on the other hand is definitely on a downward slide. Some days it is almost impossible to carry on a conversation with her. Other days she just rants about whatever comes in her mind... no matter what is said to her. She's definitely not processing what she hears. Yesterday, the sitter had Mom and Dad on the front porch. Mom got annoyed by something and got up and walked off. This is an unsecured area. When Mom got far enough that the sitter couldn't see her, she didn't want to leave Dad so she sent a facility employee to get Mom. Now Mom has decided she is in a prison. I happened to call after they got back to the room and Mom was in melt down. Mom was unable to explain anything that had happened. I needed to talk to the sitter anyway so I ask to speak to her. I ask Mom four different times in four different ways to let me speak to the sitter and each time she said ok but never gave her the phone. This type of response has happened several times lately and it's new. She just says ok and has no clue what I am talking about. Everything is ok.... even her in tears.
As for sister 4, she's not speaking to me still and has sent no information on Mom or Dad. She did answer the phone when I called today. I ask how she was and got back "fine". I ask how Mom and Dad were and got back "fine" even though I know Mom was in melt down yesterday and she was still aggitated today. I ask a couple more questions and got back one word answers. Then she just handed the phone to Mom. Sister 3 says I need to be the "Bigger person" and gravel. But that is what always happens. Sister 4 throws her temper tantrums and the rest of us are supposed to gravel. So for now I am just letting it be what she has made it. I have taken care of the cabin and in two weeks I will be taking care of clearing out Mom's house. I have their taxes ready to take to the accountant and I will see Mom and Dad soon. Probably a couple of days before I go to clean out the house. I will do what I am supposed to do, keep calling Mom, and see them when I can. Sister 2 is my life saver. She's helping me with the house. My nieces helped me with the cabin. I'm doing well without the chaos. I just wonder how sister 4 can do what she told me she knew was wrong..... not keep me or siste 2 updated on Mom and Dad. OH well.... it is what it is!!
First of all, sister #4 is shameless.
But it is what we all say so it is nothing new but it is just reprehensable that you or anyone in this situation has to deal with this crap while dealing with the heartbreak that this disease is.
I'm glad your dad is doing better but isn't it just like this disease to tease you...make dad better and then take mom farther away.
I hope all of the work you are doing is helping to keep your mind busy.
You're a terrific daughter to your parents. They would be so proud of how you are handling yourself, if they only knew.
Just reading an update on your parents.....I really feel for you dealing with "both" parents at the same time.
Sister 4 is honestly "clueless"....I cannot grasp what her issue is with you.....and why she is so cruel to keep information from you about your parents. I am wondering if there is some guilt she is feeling, or some issues of her own she is redirecting at you, because I just dont get how she can treat you like that. We here know your heart Deb....she is your sister, she should know that even better than us, so what is her issue? Because you're not "physically" there every day? Neither is my mom, when she is able to go there, she does, but Uncle knows my mom loves grandma dearly and keeps her informed of every bite she eats, every time she goes to the washroom for goodness sakes. The other aunts, admittedly, yes, he has no use for, but that came after many incidents of begging, and pleading for help, and getting nothing in return, not even one visit in two years from people who could "walk" to visit them never mind drive or fly. I could shake her, for treating you like that.....thank God you are able to see past it, although I'm sure on some level it has to bother you.....but you handle it so well Deb.
God bless you for doing all that work cleaning out the cabin and then the house. Emotionally exhausting work for sure. You are a wonderful daughter!!!
As far as sister #4 and what she is still doing to you I just don't know what to say about her. I'll tell you what Mom always told me, "If someone you love treats you in a unkind way over and over they must be jealous of you. That jealousy eats at their heart so you ignore them because they are miserable people". Thats hard to do I know, very hard. Sister #4 is an unhappy lady isn't she?
I'm so sorry that your Mom is doing worse this week. God bless her heart. This disease is just so horrible and no one can possibly understand what a rollercoaster ride we all take daily unless you've been there. Our Moms want their lives back don't they? And we can't give that to them....its just so sad what they have to endure until they know nothing at all.
It sounds terrible to say but I can say it here......Some days I wish Mom knew nothing.........just nothing but her family when she sees us walk into the room. That way she wouldn't be so tortured wondering what in the world has happened to her old life. I spent the day with her again yesterday and we sat outside on the patio at ALF. She looked at me so surprised and ask where on earth her car was parked if this is where she lives now. Same questions over and over until I'm exhausted when I leave. But we'll keep telling her and maybe things will start clicking. Light switch off, then its on.
Thank God you have sister #2 to help you. You make me tired just reading about all of the work you are doing right now. I envy people who can still work hard deb. I can't do much because of my back so be glad that you can still get in there and make a difference. I didn't think I would miss working hard but I sure do. I misss the feeling of accomplishment after a job well done.
Well now what????? The Dr. just called and he wants to see Mom TODAY. Its about her blood work that I had done last Friday. I ask if I could take her tomorrow and the nurse said TODAY. Wish me luck and Mom of course. It never stops.........does it? Oh well another day on Planet Alzheimers.
My dear, I'm sorry that Mom is slipping. It seems that she is just sliding on crisco isn't she? It's one thing after another lately. It makes you want to have her memory just gone so she can settle down. It would be nice for her to calm down and be able to enjoy where she is with Dad while she can. Soon she won't remember and be poorer for it. And who knows what #4 has said to her to rile her up!
You certainly have been a busy bee getting the cabin open and now the house ready to sell. But you are right that you need to move on the house while you have a buyer. As much as it is full of memories, it is just a container, a building, and it needs to have people in it to be a home. If you have a buyer for it in this market, go for it! Take what you can get and be thankful that you can. And the house will thank you also. They don't like standing empty and alone either. It makes them lonely also.
You know, your sister is just plain ornry and stupid. She is missing out on having you as a best friend and sister, instead she is doing her best to alienate you. She would do well to get some counselling. It would truly help her in her dealings with people. And I certainly think that it would help her in how to act like an adult...thinking about adults....
Whatever came of the NH that you found? Are you going to move mom and dad to that place? It sounded like the ideal place for them to be in. I would think that this would be the time to do it before your mom has one of her major flipouts......
you are one special person deborah...you know that don't you? And everyone of us here would be thankful to have you as a sister, don't ever forget that!
Yes Chris, sister 4 is a very miserable person. She will tell you she is fine but it is evident that she's not. I'm with you on your wish Chris!! The only way that Mom will get past this need to go home and the anxiety it causes her is for her to forget. To be in a place that she can't remember what is. Right now she remembers the good times before the disease and doesn't know she has the disease, so why can't she just go home. I do hope everything went well at the doctor's today. I will keep you both in my thoughts and prayers.
Caroline, my sister is who she is. This is not totally out of character for her but is amplified by Mom and Dad's situation. The other difference is, I am too emotionally worn out to deal with her tantrums so I just let her have them. I will always be appreciative for what she does for Mom and Dad but what she has done to me is a totally different issue. Yep, she has issues and likes to take them out on me. I learned a long time ago that you can't change somebody else's mind. I am sorry she feels the way she does. She's missing her big sister....
Jill, I have the facility I found on hold. They still have the mid size room available and the lady I talked to is going to let me know as soon as the larger room is available. Where Mom and Dad are now is a sister facility in the same corporation as the new facility (though their is NO comparison between the two) so it will be an in house transfer and they will have priority over the waiting list. I really do hate to move Mom and Dad if it is not absolutely necessary because of just what Chris is dealing with. Dad is settled and seems to be content where he is. That took months. Mom is not settled nor contect and I am not sure she will ever be...... until she forgets more. With Dad on the new meds and him being ok.... I truly hate to upset that apple cart. I'm just biding my time with the alternative in my back pocket. We have already been notified that Mom and Dad need to be moved because of his wondering. They (staff and sisters) are ignoring it for now. Sisters 3 and 4 have done nothing to find an alternate facility and sister 2 is with me on the local one. At some point that next episode will come when we have 48 hours to move them, and I will have the solution. I am a patient one.
For several days Mom talked incessently about sister 4 being angry with her. I told Mom over and over that Sister 4 was just angry and it wasn't something Mom had done. I reminded her of all the times in the past this same thing had happened. It was the question of the day for the entire weekend. Then the episode Monday when Mom walked away from the sitter and the staff had to go get her. That makes her feel like a prisoner and in her words "I need to be free as a bird". That lead to the melt down of the last two days. Mom's answer to everything is "I wanna go home" to that place and time when everything was right. I konw that will never be but in her mind... she's fine. Sister 4 was there again today. I could be there helping but !!!shrug!!!
Thank you for your kind words Jill... The Deborah tugged at my heart because that's what Dad calls me. Yes, I do know that I try to do my very best in everything that I do. I am no more special than each one of you. I will say that I have found more love, caring and support from all of you...... You are each and every one special to me and I would love to have some more good sisters
I'm truly ok. My family is what it is and as long as I have my bike to pedal out my frustration I will be good
I have 5 sisters all very alienated from me by deliberate lies told by my Mum to them from the time I left home. I was the housekeeper and babysitter and I deserted the family - according to all of them. Doesn't matter - they all come to me for help because they can't go to our parents but then if I attempt help them and it is still going pear shaped it was my fault from the start. OK enough non-sense about my not so nice family.
I read a quote I wanted to share in the Readers Digest the other day, "friends are God's gift to us to make up for the families we are given."
I'm new here with a large and complex problem with a Mum with 2nd stage ALZ and a Dad that loves her too much to take any action to help her,as that would embarrass her. For instance of not calling an ambulance when she clearly could not help herself but leaving it up to me to care for her - an impossible task.
I live some distance away but I have been told by my sisters as I don't have a life, I will be our parents end stage carers. I am not particularly strong physically and it is going to require physical strength in the end, it does now at times. I have had MS for over 30 years and that is the reason I have no life. I am an author/artist and have raised 3 beautiful children to adulthood, mostly alone.
I don't have a partner and that is why I don't have a life I was told. LOL
Love to all,
Tanya MS dx 1984 fp. 1974
Mum serious mental illness and drug addictions since before 1961 - very abusive to me, physically, psychologically and emotionally. Suicidal, poss. bipolar or schizophrenic.
Dad alcohol abuse from the time I was 8 til I was 23 - never violent.
he started drinking after my Mum started attempting suicide and running away.
p.s. my sisters have never been abused by my Mum and they treat her and my father with utter contempt - hence I am the obvious carer. Despite their faults I still love and respect them all.So I would be the carer inspite my sisters voting at a 5 sister meeting, me to be such.
Sorry long post - it is complicated.
Last edited by ArtyTart17; 03-12-2009 at 07:10 AM.
Get a backbone. Just because of a family vote doesn't mean you have to do anything.
Not saying to abandon them, but you don't have to be actual caregiver. You get power of attorney and medical poa as well. Then you work with social services and find resources to help them. NOT DO IT YOURSELF.
No one here including my sister could truly do it alone. I saw the toll it took and its not pleasant.
Just ignore what the sisters say. Be loved by your children and friends. Make a life for yourself outside of your parents. Just because you were born into that family doesn't mean they are family.
My mother was not close to me, much closer to my sister. She gave me birth and for that I am ever grateful but she also created a lot of chaos in my life that while I can forgive to some degree, I'll never be able to forget.
But that didn't mean I had to do hands on care when I knew it wasn't in me emotionally or mentally. However I was able to support my sister as much as possible even during difficult periods where she couldn't accept what was happening.
You must take care of yourself. So I said my peace. Anyone else want to chime in. One more last thing. My Lord loves all of us whether or not we chose to jump into the trench or we are the ones holding up the walls so they don't collapse on anyone else.
You can be involved by directing others not doing it yourself.
I said my piece in another post but the more I read the more I see that you need relief. I would absolutely stand up and say, alternative plans have to be made. I actually did that. I don't have a "real job" so I ended up with the majority of Mom and Dad's care for over a year even though I was hours away. They both have dementia. Then one day Mom ran off the sitter and instead of running home to fix the situation I called sister and told her she had to do it. A week later Mom and Dad were in AL. Funny how that happened. Logic put them in the city where two of my sisters live. The one that ended up with the bulk of the responsibility dispises me more than she did before and has shut me out. But that's ok because she has to live with what she has done. When you are done with this you will stop it I know, because I have been there. It will be replaced with something else just as insane That's what happens in disfunctional families!!
Well the Drs. visit with Mom was confusing and hopeful. Her Dr. believes that Mom has something called carcinoid syndrome. A rare condition that causes severe bouts of diarrhea, severe pain, bowel obstructions, lung problems, severe swelling of legs and feet, large distended stomach with a history of unexplained symptoms all of which Mom has had for 20 years. These conditions have put her in the hospital so many times we have lost track. So many Drs. with a positive diagnosis for each condition. She has had the same GP for 20 years. He cares for Mom and is a hands on kind of Dr. Now he feels bad that Mom has suffered so much. She told him yesterday that she loved him and he said "Love you too Mom". Lets pray that I can help you". So sweet.
The blood tests that Mom had revealed huge numbers like 595 where the average should read 67. These were blood tests that I have never heard of before and I didn't have the sense to write them down. The last test is a 24 hr. urine hold. We'll take her to the hospital to have a foley (sp?) inserted and I'll bring her here to care for her. I'll have to keep the urine in big jars in the fridge (out in the garage of course) then take all of this and Mom back to the hospital the next day to have everything removed. So thats the plan.
Her Dr. went to a seminar at Washington University, St. Louis and a Dr. was lecturing about this syndrome and he said my Mom just popped into his head and he really believes that she has this condition. If so, we will take her to Barnes in St. Louis to the oncology specialists. We will not put Mom through any chemo treatments we've told him that but we will give her medication to relieve her pain if this syndrome is what Mom has suffered with all of these years.
Thats the scoop on the Drs. visit. Now its on to more Drs. and pray for an outcome that can relieve Moms pain and diarrhea both of which has drove Mom crazy for years.
Unfortunately this will not help Moms dementia of course. I pray the Drs. can relieve some of the awful symptoms if she has this syndrome.
I'll keep you posted when I find out something. I've spent hours on the net reading about this and there is a ton of imformation there.
I'm in Australia and I'm not sure what to do to get POA here. The one time I said to my parents I wanted to know what they wanted for their final years, my mother reacted violently, "Look at that Blaf-blah [DAD], she can't wait until we are dead" I said "not at all, I want to know what your wishes are while you are living if you are unable to care for yourselves." Dad silent, Mum, "look she's even lying" I replied " not at all, please listen, I am going to be responsible and I don't want you in danger if you are incapable." "Huh" says Mum "If I can't look after myself I want to be left alone to rot in my home." [notice no mention of my Dad] Me "no-one would allow that to happen." Mum, "then I'll kill myself." Me "OK, we are not playing that game again. One of the sisters will have to help you." Mum "No, no, its your job, they aren't interested." Me, pulling my hair out, "then can we talk about it? Dad still silent but nodding vacantly, Mum, "Of course not, you just want us dead!" End of conversation if you could call it that.
This is what I am up against. Fairy land.
At my parents recent 70th birthday sister #3 made a speech after telling us all we didn't want to and she would have to do it. 5 of us stood on the stage in the town hall and she stepped forward and said "I like to think of myself as the chosen one," at which point it was all we could do not to push her off. She certainly has stayed close geographically to our parents and there has been a great monetary pay off for that, but none of us are meant to know. We all interjected and said our piece, which is what she didn't want but we did. Shortly after she came over to sit very close to a man that is quite a good friend of mine, to whom I was deep in conversation, cuddled up to his arm, looked up at me and said "don't believe anything that Tanya says, she's a lying b$%^&" He ignored her and so she jumped up next to me and said "I've been living on this rock for 50 years to get the lot." She is 44, "and nothing is going to stop me." I know now that she has lost the plot as well, always has been a little delicate mentally. I should allow her to take power of attorney? I am named as executor in the will and I am not sure either of my parents would be considered competent to make a living will. I tried to talk to their Doctor about my concerns but here I have to have POA to do that. Every contact with my parents it gets more troubling, more obvious and they get more vulnerable. They recently gave $10,000 to complete strangers to help them start a business. Of course strangers gone and money with them, there was no record of a loan or any plan of repayment but my Mum was very concerned that these people should be caught and made to pay the money back. I said without a legal loan agreement there was no loan just a gift and without a paper trail you may never find them again. Mum, "what can we do, we aren't made of money?" I said " no more acting like you are, people will take advantage if you do." Mum, "they were such nice people." Obviously not! I'm hair pulling again.
I've convinced myself that I need to get a lawyers advice - thanks for your help. I'll be bald if I go on like this.
Tanya, we need signed papers to discuss a doctor's patients here too but I went to my mom's doctor and told him to listen...he didn't have to utter one sound and then I explained all that had been going on with my mom...he took it from there.
And yes, I think you might want to involve an attorney. Your parents sound as though they need more help than you can give them on your own.
Chris, that is such hopeful news. At least it is a promise of a possible resolution to some of her problems. If she feels better then she will act better. I know Mom and Dad both go a bit off the deep end if they are not feeling well. They have so much trouble explaining their aches and pains and it scares them. Maybe she will settle down for you... hopefully. That's a lot on you to have her home with a foley but if it is going to give Mom relief then it's worth it. Those types of doctor's are amazing. It sounds like my daughter's pediatrician. 25 years ago they didn't know about ADHD as they do now. He was also at a conference, during the ADHD discussion he thought about my daughter. He called me as soon as he returned. She was a text book case and the rest is history. She's will graduate from college with honors in a few months I still seem him occassionally and thank him every time I do!! I do hope this works out for your Mom and she finds some relief.
Tanya, get to the lawyer's office NOW!! Neither your Mom nor your Dad are capable of making the decisions that need to be made. If they retain control of their money there will be more incidents like the man who wanted to start the business. Mom tried to give $250,000 to a B rated insurance salesman she met at a restaurant. When I found out what was going on, luckyly I was able to stop it, but Mom then gave them permission to proceed. I was able to stop it the second time as well (thank goodness for 30 day grace periods) but they had take money out of long term stocks and she ended up paying major capital gains taxes on it. Other smaller amounts of money just disappeared. I finally obtained a financial POA with her financial institution. They know not to move anything unless I OK it. The only thing she has access to is the checking account, which I am also co-owner of and can deal with it as I see fit. That was necessary for their well being. Now, 2 years later, she is resigned to me dealing with it but it was a struggle for a while.
I have had similar conversations with Mom about her future. All of us have been accused of puting her in prison so we could steal her things. She frequently says she would rather be dead than locked up in that place. Before she left home she would tell me if she couldn't be at home she would rather be dead. When she was in her right mind she did handle the POA, living will, and wills but after ALZ she threw away papers, duplicated what she had done, and generally messed things up. But it was not disasterous enough that we could not fix it after the fact.
Just know that what Mom says is not said with her logical mind. It is said through the fog of dementia. Just take it for what it is... the ramblings of dementia. As for the sisters.... you know who and what you are. You also know who and what they are. Remember that. Next time they want to be mean just step up for yourself. If they don't like what you do, offer to give them Mom and Dad. That usually will shut them up