I've mentioned that my mother was diagnosed with terminal metastatic breast cancer and Alzheimer's. The cancer is squeezing the breath from her lung(s). The ALZ prevents her from fully understanding that she is dying from cancer. I had a difficult time finding hospice for her. 1) if a patient is on treatment, then most hospice won't help. My mother is on a hormonal treatment that MAY slow the progress and aggression of the cancer. 2) she was not given a definite amount of time (who can predict) and some hospice take patients when they are given 1 year or less to live. However, after much research, I think I found a hospice in AZ who will take my mother's case. If so, then my dad, her caretaker, will have respite care. My mother will have help bathing, as she is refusing to shower. I have power of attorney. I wrote to her neurologist and primary care physician outlining the changes in her behavior since her last visit(s). Neither doctor responded to my letters! What's up with that? It is very difficult being in CO while they are in AZ. Would anyone be so kind as to give me their thoughts, comments, or experiences with hospice? As a (former) social worker, I know only from the side of arranging for care. I don't know from the aspect of the family dealing with hospice. I'd appreciate any input. Thank you.

I just left a job in August with a visiting nursing group and worked primarily with hospice. I know that with us, we had a 6 month or less expectancy to be admitted into the program. Of course, often these patients lived longer. Hospice is really where my real passion lies. I loved working it. We also had a palliative care program where we would do essentially the same but often these people were still receiving some medical treatments. Hospice is generally for comfort only i.e. oxygen, medications, daily visits. Please keep us posted on what happens. Anything like this can only enhance her daily living and be very beneficial to those around her.

Thanks, LJ. She needs visits, as does my dad, who is at wit's end caring for her. He also needs help with her medications. He is blind in one eye, yet he has to read the teeny tiny printing on the medications to distribute to her each day. We boomers are talking about how we know we are right with ourselves and the world in another forum. I have the inclination to drop everything here and move in with them, but it is not my intuition, nor do I feel inspired to do so. Therefore, despite wanting to relieve them of their hardships, I know it is all right to do what I can from afar.

Yes it is, Princess....to do what you can from afar. My dad was caregiver for my Mom for 8 years (Alzheimers) and we all worried so about him. She may qualify for all kinds of help which would only relieve your dad and let him get much needed rest, hopefully. It's good you recognize your own limitations...so many families don't and then wonder why they're tense, exhausted and depressed!

Since April of 07, since we learned of my mother's metastatic breast cancer that is terminal, and since we learned she has Alzheimer's, I've been saying "hospice, hospice, hospice." But there was a whole lot of reasons she was not eligible for hospice, such as the fact that the oncologist is giving her a medication, not a cure, but a treatment to possibly slow the growth of the tumors. Well, finally, after writing many letters, making phone calls, researching, etc. all from one state to another, today I finally got word that Mom is accepted into a hospice in AZ. She will remain at home, but hospice will visit often, providing care and comfort not only for her but also for my step-dad, her caretaker. On one hand I feel that my tenacity paid off: I got her what she needed. On the other hand, it is a sad sad day to realize that her condition is indeed so terminal she needs hospice.

Princess Lenora,
I am in Tucson but no matter where in Arizona, if you need anything checked out, or anything done in person here in Arizona, I will be happy to help.

Please do not hesitate to PM me or email me if there is anyway I can help you in this hard time. I am a native here and can locate or get information on just about anything in a short amount of time, or quickly if it is an emergency.

My own mother has had to live with a caretaker and has been taken care of for almost 30 years! She has had her own home and has been placed in a home with a few other women, and she has lived in other arrangements as well over the years. This has left me knowing many people in the field of caring for parents after all this time. She was unable to care for herself since I was a girl and has also been unable to really remember much or retain enough for a relationship for all these years as well. She has needed care all this time. I have been through just about everything one can go through when being responsible for a parent.

Soon, I will again have to go to court to force my mother to have medical care she critically needs because she is refusing it again. I have to do this when she is ill because she will not accept help. A judge will put down his gavel, and if needed, the police will take her to a doctor to get the procedure she needs so badly. I will be with her caretaker, her fiduciary and her doctor in court.

so, let me know if I can help, I've seen a lot,


dancer9

My dad is talking about signing into a hospice next week. His cardiologist and his general say they can't do anything more for him... they were saying this 7 months ago too, but for some reason, the Lord is giving him more time... he could live another 1/2 year, or even more... only the Lord knows.

Thanks for the offer Dancer. You are going through so much yourself. I'm sorry for all of you who are experiencing this kind of care for parents. I have learned that hospice policies vary by state and by agency. It used to be that hospice was only for those who had 6 months to live. Now that "rule" appears to be changing. With the availablity of more medications and technology, it has become more difficult to predict how long a patient may have. How many times have you heard someone given 6 months to live and he/she lasted 6 years? There is no clear prediction in my mother's case. What I am hoping for is that her fears and my dad's fears are addressed, and that they are both more comfortable while she is here. The Alzheimer's prevents her from understanding that she has cancer. She does not even understand that she has Alzheimer's. Gimster, your dad has presence of mind to do this for himself?

ah, Princess, I've done this so long, I don't remember NOT doing it!
dancer9

I'm sorry about your father, Gimster.
dancer9

Lady jane, how did a family know when it was time to move the patient from the home to another facility? She needs to be tended to 24/7. She did have the presence of mind to keep her delusions somewhat to herself, but now she is telling her hairdresser of 8 years that there are children hiding under the chairs. She snuck out of the house to tell the neighbors that there was a baby she was supposed to be taking care of. (this is in a housing where you have to be 55 or older.) It looks like I should go to AZ sooner rather than later to look for "facilities" for Mom. She is officially in hospice, but they are just getting started with her. The neurologist prescribed a med called Seroquel to help Mom be in less turmoil about the children. Help! She is very beligerent toward my step dad whose been her husband for 46 years. She fights over food he fixes for her, and she hasn't bathed in a month.

My 3 favorite words to hear from my husband are not "I love you," but "You're right, dear." Here is a case where I don't like being right. Well, I was saying for 6 months mom needed hospice, and hospices I researched denied due to her being on meds, and then FINALLY THANKFULLY getting her one, and they say, oh, she should have/could have been admitted to hospice sooner. Here's the other one. I wrote a letter to her primary care and neurologist, detailing her behavior change since they saw her last May. Both doctors got her in this week and were dismayed by her "progress" which in Alz is deterioration, or progressing to the next stage. If not for the letter, than the appointments would have been in April 2008. Here's the rub: I've been knowing for years that Mom was told she was schizophrenic when she went to the psych hospital when I was 13, but Mom have always denied it, and Dad always covered for her. I've been saying for years she needed to be medicated to soothe her stress and personality changes. Today, the neurologist prescribed Zyprexa, which is a med for bi-polar and schizophrenia. I wonder if anyone had listened to me sooner if all of this could be avoided? Dad would never hear of it, it being therapy and meds. What if Mom had been medicated and had therapy for the last 40 years. Would she still be in this position of dying from cancer only to not know it because she has Alzheimer's? What if the Alz is not really Alz but is another manifestation of the schizophrenia? She is looking for lost babies, which I think represent the babies she lost in miscarriage. Was it easier for doctors to DX her with Alz because she's older than to take care of her with schizophrenia? I don't know how my mother maintained herself. She can carry on a phone coversation with me (still, thank God, but for 2 minutes or less) and all the while she is carrying on ANOTHER conversation with her invisibles, making comments to "them" on the side while talking to me. Am I just driving my own self crazy with questions that don't have answers or maybe this just doesn't matter who did or did not do what when and how and why she was diagnosed? I just made peace with my mother and myself, (my mother, my self) and now not only is she dying, but her mind is gone. Dad said she pointed to a picture of me and my husband of 20 years, who she saw this past summer. She said, "I know that's Lynnie, but who is that man in the picture with her?" Well, any insight, or information from anyone who has been through this would be much appreciated. I always spent a lot of time on my mom, thinking about how what I might do or say would affect her, loving her, then being mad at her, we had intense relationships even during estrangements! but I never predicted that her last years or months would be this intense. Lady jane, how do families know when they are ready to move the patient from in-home to a facility? Dad is at wit's end. He's vomitting from stress every night, and he has only half a stomach left due to removal due to ulcers. They have no income besides SS. I'm sad and depressed. Headache.

Oh Princess Lenora, my dear, anytime would be good to move her. I know that's sad and hard for any family to do but...given your dad's situation, you risk more than just losing your Mom. We feared more for my Dad than my Mom at a point. He had the alarm set for 3 times a night to get her up for the bathroom. He was exhausted, even when he had a daytime helper in. What forced him in our situation was the day Mom sat at the kitchen table and ceased moving. She spent a week in the hospital in a semi-comatose state. Then she went to a facility where she spent 6 1/2 years deteriorating until she passed, mercifully. There's no magic time that happens when everyone knows that a move is necessary, because everyone is different. Where there is little money to get help in the home, I would say the move should take place sooner than later. She may not be happy but she'll adjust and your Dad will be able to visit on his own terms. I remember conversations with my Mom that would start out logically and then she'd be in tears describing something really strange. One time I remember a short but normal talk and it went into flying in a plane and seeing fire on the ground everywhere. It's in the process, unfortunately. Lenora, there is probably no real answers to the questions you have about her mental health as to whether it is really Alzheimer's or a mental illness. Either way, it's exacerbated beyond a healthy control for all of you. You will have questions always, but sometimes you have to set them aside and deal with today only and the future as it comes. And remember, part of this is grief for you. I grieved for years as every little part of Mom left. By the time she died, I was able to speak at her funeral and the grieving was not very intense...it had already happened. Please keep us posted! I pray for your father especially.

Princess,
This is most unfortunate and boy, do I relate! My mother also has her bouts with more voices and then less! She is hearing more now because of a health care issue.
I was thinking that your mother may need 24/7 health care as my mother has with a caretaker in her home. This is because of family money or she would be in a home, no question! Your mother, like mine, has lost touch with TOO much reality to hold a conversation for long, correct?

Your mind would be at such ease, as mine is, if you knew she was cared for at a facility for those with problems such as these. If you are in AZ, I would be happy to help you look for one, I know how scary and lonely it is to do.

About Seroquel. Seroquel is an anti-psychotic and works in doses such as 200 to 300 mgs. in Shizophrenic patients to quiet the voices. It blocks, "unwanted thoughts," in low doses, such as 25 mgs, in those with things like OCD. It is a GOOD drug. It has fewer side effects but can affect the blood sugar, although most can tolerate it well. It can cause fatigue but most med's of this kind can. All in all, I would like my own mother on this med above all others. I tried it at 25 mgs. for a "flashback," once and it did, indeed,stop me from obsessing over the abuse I was recalling. It works.

Good luck, my dear, I hope all goes well but don't give up.Once my mother had her front teeth knocked out while being robbed on the street before we got her 24 hour care, it's hard and sad, I know.
Your friend,
dancer9

Lenora,
Oh how hard this is on you! I'm sorry. I've a few answers for you.
It is true that schizophrenics that are treated earlier have to take less medications and that shizophreniz can get worse without treatment as their mind goes further and further. By getting treatment soon, a medication will sort of "halt," the disease where it is and not let it get any worse, or this is the latest study! It is NOT your fault for one needs backing to commit a person in Arizona, and as you know, it takes a court order to commit a person for longer than 72 hours. You've done what you can with the help you had, and like myself, you've had almost none.

If your mother is ill in other ways, she NEEDS to go into 24 hour care and again, it will help her and YOU, because your poor mind can rest and think of you!

Don't waste your time by trying to understand what her "others." mean or say. It is useless although we may know what they are refering to, it does not stop them. At times we may be able to talk them down by knowing what is upsetting the "voices," but we cannot be there to try to understand what is setting them off all of the time.

Lenora, we are protective of our mothers, esp. those of us who have had sick mothers all of our lives. We cannot let it take our lives away.

If you feel she needs a hospice, then d*n right, she needs one! Follow your mind and heart here and do what you think is right. YOU KNOW, never second guess yourself, even for your husband. It is YOUR mother and we have been living with our mother's illnesses for longer than anyone in our lives. We know what is needed.

Don't be sad or worried, dear Lenora. Turning your mother's care over to someone else who is objective could be the very best thing you ever do. It was for myself and my siblings!

We call, I visit, I take her out when she is well, and another person watches her health! I can live my life without guilt or worry. You deserve this.

Again, I'm sorry, and I'm here for you, anytime. PM me, mail me, anything you need to do..

dancer9

Princess,

More Irony:
My father covered for my mother's illness for years as well!
Wow.
dancer9

Dear Dancer and LJ, thank you for your comments. I think we should get my mother to a group home. I'm sorry I went onto a tangent last night, and I appreciate all of your thoughts. LJ, I went through a grieving process about a decade ago when I had to face the fact that my mother was not fully present. I had plenty of therapy sessions about that, and made peace. But for whatever God given reason there is, she and I remain intertwined in intense relationships, and I am to grieve losing her in a whole other way. I am sorry for what you both have endured, and I appreciate that you can share your experiences with me. It helps. Now I am going to see what group homes are available to her because I hear that is the least expensive way to go at this time, and a more popular choice in terms of care. L, PL

Good luck, Princess, and please keep us posted as to how you do?
Warm regards,]
dancerr9

I've got an elder care association working on this for me, called "A Place For Mom-Dad." The org exists to refer people in need, and the places pay the org so the org can stay in business. She said she'd get back to me in a couple of days.

Princess, my heart goes out to you. Even though my mom can't speak, we can still communicate. And, yes, my dad is still well in his noodle, and he is at home. One of my sisters lives there with him, and one of my brothers is there pretty regular to take care of the maintenance chores. My dad is pretty much confined to his recliner, bed and makes short trips to his computer. He still sends out newsletters for his ministry and communicates through emails to all of his ministry loyals. Mother, on the other hand, is in a facility - not because I want her there. Can't go into it here. She's having a horrible go of it, which infuriates me. My hands are tied. I cannot legally do anything, unless I want to take full financial and care-giving responsibilities on myself. At this time, I'm not able to do it.

Gimster,
I'm so sorry for the "trap," you are in as far as caring for your mother. I understand it all too well! I could also take my mother's trust fund and care for her myself but I just can't take all that responsibility or the memories of my broken childhood!
It's hard, I know, to think that you MIGHT be able to do something but remember: You are a great daughter and you are doing the very BEST you can do! You needn't EVER feel guilty that you cannot do more.
We do our best by our parents. Sometimes situation become hard and harder still to watch happen. We have to be strong and deal with only what we can.
You are a good woman, your posts tell that!
I wish you the very best and hope your mother does as
well as she can facing what she is, I'm sure everyone will do what they can,
Warm regards,
dancer - nine

Gimster, I am really sorry for what you are going through. I am touched that you say you can still communicate with your mother, although she can't speak. I can only imagine that you miss her saying your name aloud. Your dad is trying his best to live his best while he can.

dancer, I can only say I'm not doing enough... thank you for thinking otherwise, but if I were, I'd put all other considerations aside and do what my heart keeps prodding me to do... And you labeled it so well - "TRAP" is a very good name for it... my mom is trapped and so am I (and a couple other siblings that want things to change NOW) In one of her rare moments of speaking clearly (when she's not anxious, afraid, full of despair or heavily medicated), she said quietly, sadly and so sweetly today, "I just want to go home." My heart fell to the floor. I cry as I type this. It all feels so hopeless.

Princess, believe it or not, I have never been one of her special children, and she and my dad both have held favorites. But, you know, she remembers my name more than any other. She even calls other sisters by my name. It's really bizarre, and I don't know what to think of it. Why, out of over a half century of not feeling loved by this woman would this happen? It makes no sense. But, who in this world gave me the idea that anything was suppose to make sense?

oh gimster,I'm so sorry your heart hurts as you say! You ARE doing everything you can! It would not do for you to make yourself unstable to help her! What would she want? She would want her child safe and stable and "ok." Every mother wants her child to be so and I'm sure you were not her "less loved child!" Sometimes we give attention to the children who need it the most and forget to notice the child that can do things on their own! That does not mean we don't love them, although they feel we are not interested. It means we know they will be alright! This could be the case when you were young!
It hurts, yes, but again, it's not your fault! You are doing what you can and somehow, your mother knows your love is there, I can tell by how pure it feels when you write it! I'm sure she can feel it too.

Warmest regards Gimster,
dancer9

Gim, I do understand this: because we cannot FEEL the love from others does not mean we are not loved. I went through this in marriage counseling. I was the one feeling unloveable, when in fact my h loved me very much. It was me being closed, and I had to learn to open up to RECEIVE love. I think we will learn what makes sense as we evolve. Or when we die. I don't know. Just when I think I have something figured out, a new element is introduced!

gimster, all this caretaking that we boomers are experiencing can often be mind boggling. Try to take care of yourself during this difficult time. Maybe - read uplifting books, listen to music you love, take warm baths, walk, pray, and seek God's will for your relationship with your mom.

I am kicking myself for not praying more and reading the Bible more with my mom when she was still with us and becoming more and more sick. Perhaps this is something you could do with your mom because I recall from other posts that she may be open to this. Reading God's word to the sick has tremendous healing factors for both people involved. I hope you don't mind my sharing this. Just trying to help.

I had the same lesson, Princess! When I was young, I actually had boyfriends ask me, "Why don't you come to me and lean on me when you have problems??" It was amazing to them that I dealt and didn't even involve them! I was so used to being on my own, as you, no doubt were, that it never occured to me!

I retrained myself to go to the person(s) who loved me and cared for me for help or an ear to listen or even advice if I needed it! It was a huge hole in my life not having anyone there for me when I didn't let anyone be there. I didn't know how! I still remind myself that I can reach out if I need to!

I'm happy for you that you learned this! I suspect you are a bit better at it than me... I am SO independent that it is a fault!

dancer9

I've been avoiding this thread... reading, but avoiding input... (hugs to those who've shared and cared, but I'm trying to keep my mind in good places for the sake of my children and their families tomorrow). I'll jump back in after the holidays and keep it at THANKS and MERRY CHRISTMAS for now.

Great idea gimster. Way to look out for yourself! Merry Christmas to you and your loved ones.

D9, no better, no worse. We all have different abilities to cope, and we all have different stages in terms of giving and receiving love. TRUST was (is) the major defining characteristic of many friendships. I trusted the wrong people, and did not trust those who were genuine in their LOVE for me. My definitions of love were all mixed up in the muck and mire of dysfunction. Dotsie, I must input that one of my most cherised moments with my mother was when she was in the hospital in April/May over Easter and Mother's Day. I would lay on her hospital bed with her, and read all her cards to her, and point out the messages, and discuss them with her, and who sent what, and many were spiritual in nature, which soothed her worried mind and soul for a while. That was the good moment. Then, she'd turn on a dime, ask me who the H*** I was, what was I doing in her room, and saying to me, "I think you better leave." I knew it was the disease.

I'm sorry for that last part of your visit, Princess. I know it OH SO WELL. A nice conversation, which I am on pins and needles during, while I wait for "God," or an "Angel," to come in her head and tell her something. When this happens, she will say something like, " They say you are tryig to trick me ________, are you trying to trick me? Because if you are, they know, and it's you who will pay."

And then I spend the rest of the visit trying to explain to her that I came to visit and I was not "tricking her," and asking her what I could be tricking her about, etc...

After which, she will sigh, hug me and say, "Go with God, ____________, that is all I do."

Nuff said, huh?

Sorry, Lenora.

dancer9, its a sad thing.

Thanks for telling me DD9. I'm sorry to hear that you have been through this all your life.

Thanks dots... BTW we did have a nice Christmas. WE PLAYED SPOONS, most players under the age of 13, but it was great. We didn't eliminate players, however. We had so many at my daughter's house, new players were standing behind chairs to fill the players' chairs who didn't get a spoon. That way there were two competitions going, one to get a spoon, another to get an opened spot. It worked out well. Thanks for bringing this game to mind. My grandchildren are finally able to play and it was a new experience for them. It brought back memories for my girls. They actually remembered playing during holiday get togethers when they were wee ones.

Princess, my mom always knows who we are, but she gets nasty at times, because she feels like it. All the good times shared disappear into a dark rabbit hole somewhere. I have learned to say, "well, I guess I'd better get going." I tried to discuss her angst with her; I tried to reason with her; I tried to help her figure out what was wrong; I tried to change her mood by talking about other things; I tried telling her she had every right to express herself... these were different approaches I've tried since May, until a little over a month ago, that is when I couldn't control my own angst. I let her have it verbally. Now, mind you I have never spoken back to my mom in any way, ever, over my lifetime. My reaction on that day was not only a surprise to her, but to me also. I ended my spout with, "Mother, I'm going to go away for awhile and do some thinking." Turned around and walked out the door. I didn't go back for over a week. I decided I was NOT going to be treated that way, no matter how badly she was feeling. I have been her strongest ally... but that's not the reason I deserve more respect. I deserve respect because I am a human being. Much more to the story, but I think you'll get the gist of what happened.
She has never been diagnosed as having Alz... just as having Alz sypmtoms and those are very slight. On some days, I count our blessings for that, then on other days I wonder if things might be easier if that were her disease.
Oh well, one of my five sisters, my youngest brother, my husband and I took her to have dinner at Golden Corral this evening. She really enjoyed herself, because it's the first she's been able to be with that one of my two brothers for over two months. She held onto him and didn't want to let go when we were trying to get her back into the car. So sweet, but yet so sad.

Gimster, as you have read, I also have a very difficult and ill mother.
You try SO hard, it breaks my heart! It is not your fault that your mother is the way she is and I hope you take time for yourself and to bolster your self esteem!

You are doing A LOT compared to me, although I DID do a lot and devoted a lot of my youth to trying to help my mother.
It breaks my heart to read of how hard you try! I hope so much that you remember you and that you are innocent and YOU are the daughter who is missing a mother!

I don't think you could do more than you are! I am so impressed but at the same time I worry for you and your heart when you are so close for too long a time with a mother who does not appreciate you! Please correct me if I am wrong, of course!

I read your post and my heart went out to you as a fellow "mother caretaker," and as a person! You are SO
kind to put up with what you are that I wanted to tell you and to try to also tell you to give to yourself!

You deserve love and unconditional love at that! You deserve thanks for what you are doing for your mother and appreciation!

I just wanted to mention my oppinion, coming in where I probably don't belong!

dancer9

Dancer, of course you belong. You are a vital part of this discussion. I'd be lost if not for you and the others who have reached out to share their experiences. I'd feel so alone! Your opinion is important. You have been through so much, and you have messages that are enriching based not only on your experiences, but also on your empathy. Plus, we cannot compare what one does with what another does. We each have our unique coping strategies, limitations, boundaries, energy levels, etc. We know you did and do a lot for your mother, and you have a court date coming up pertaining to her care. It must be very draining, emotionally and physically. GIMS, I suspected my mother was ill with dementia for nearly a decade. I can't say if it is a relief or not to know one of her diagnosis is Alz because there is no cure, and treatment is not going well. So you are expressing your own self-respect by standing your ground, saying what you can and can't take, and walking away for the sake of yourself. That means you have the self-esteem to know yourself. Didn't you say that your dad was placing his self in hospice? How is that going? PL

you definitely do belong, dancer. and thank you for your kind words. you gals often make me cry.

PL, a decade... how sad is that? we've suspected my mom has been manic depressive. There would have been no way to get her help before this year, though. I don't know if I could deal with a decade of any parent being sick. I'm in awe of you, young lady!

Gimster,
Is your mom on medication? Who thinks she is Manic Depressive? That is a serious condition to DX!
dancer, don't answer if question bothers you!

gimster, your post reminded me of something that happened between Mom and I was she was rather sick with cancer.

Mom was taking something out on me that I didn't deserve. The sad fact is that I can't even recall what the issue was. It was during the time that all of us were giving Dad little breaks by caring for Mom. I must have been having a bad day myself because when she started with whatever it was, I jumped all over her and was loud - something I'd never, ever done with Mom, except maybe when I got mad as a teenager. I shared that I thought I was the only person she would charge into like she did and I wasn't going to take it. She apologized. I felt awful. I had totally lost it.

I since understand that it was actually a compliment that she could take something out on me. She knew my heart, knew I'd give her the truth, and always knew I could handle it.

I still regret barking at her when she was so ill and scared.

I wish I could remember what the issue was. I probably blocked it out.

Please remember to give yourself the needed breaks while caregiving.

Yes, the court date to force my mother to get health care is just after the new year. I hate these things. She is so eccentric on top of her illness that it gets hard to distinguish what is her illness and what is "her," at times! I so hate that health care is forced on her, and what is worse, HER TRUST fund pays for the court's time, a lawyer and the health care! It literally works against her to have money but any other way she would die. At 70 she is still too young to even think about dying.

Oh well, I will go through yet another bizarre experience with my ever bizarre family!
dancer

Oh Dotsie, that is so true about the compliment: she knew she could be her true self in your presence. That is a gift you have that extends to us: you have the ability to nurture the authentic selves of others. Rejoice in what you could do with her instead of the regret for one tense time. L, PL

Dotsie, none of us are saints. I don’t think there is a care giver alive who hasn’t lost it, and maybe those, who seemingly are so much in control, are the ones who accidentally, … on purpose gave that “final”dose of medicine.

Dotsie,
You are such a dear woman.
You nursed and were with your mother until she died. You are so very rare because most people cannot or will not, take time out of their lives to do what you did! The love and time you put into your mother when she was ill is very, very special for a person to do.
One small slip of your temper is so mild an occasion that it does not merit your thought about it!
You show yourself as a person and a woman who works so very hard to do the right thing and there is no doubt that you with your mother at the end, did the right thing. You must credit yourself.

I admire your strength. Others should as well. You were THERE which is remarkable but you were there with your HEART, which is very remarkable.

People are so cut off from their parents and family now that they hardly give a thought to being there when a parent is very ill! They now give the proirity to their work and their own families and hardly get on a plane in the end! I know, I am a social woman, a very social one.

Lovely Dotsie, An argument with your mother shows you both care enough to argue! Arguing happens when people care, apathy is when people don't bother to argue and do what they want without caring what the other feels!

This is just my opinion of your very personal experience. I wanted to put my two cents in which I cannot help at times, as you've seen.

I think you did perfectly, and I think that you are a person who needs to give herself a large pat on the back and a long, long "break," from trying to be better and better when you can't improve on perfection.

You are perfectly Dotsie, and that is great.

Dancer9, steppin' in.

Ladies, thanks for the comments. It was a very tense time. All of us were scared because none of my siblings or I had ever cared for and watched someone die like we did with Mom. She literally withered away befor eour very eyes.

Dancer, can you plese explain what you mean by the health care being forced on your mom? Isn't that a good thing?

Dotsie, my mother has become very ill. She is looking scary as far as her health. She needs some treatment but she is refusing it. She must be literally "arrested," and put in the hosptial to recieve health care. Her caretaker and her doctor will appear in court along with her fiduciary and tell them that my mother is taking her life with her decision to refuse treatment and the judge will order that she is to be treated without her permission.
I go through this now and again and it is a terribly sad thing to watch my mother loose her freedom and be forced to do anything! I know it must be done but it is hard to see the law needing to be used to force the poor thing to live. She is delicate, like myself, she is small boned and tall and she looks so very helpless that it is very hard to see happen. My mother has never yelled that I can remember, in my life. I also don't yell. She is a very calm and sweet person when she is okay and the worst she gets when angry is sarcastic, same as myself, you see?: It's just a hard thing for me to watch and to think about. I want her well and to live but I hate to see her forced like a criminal into things, I just want her to take medication and regain her sanity.
You cannot force anyone to be medicated, you can only force life saving medical care, you see.

dancer

Sure, Anne, use it all you like. I was just thinking out loud.
dancer

I told a colleague that I had flown from to/from AZ/ CO to help care for my mother, and help my step-dad care for her as well. Plus I had gone to PA to help care for my 101 year old grandmother, to prevent her from having to go to a nursing home. Plus the homework I am doing, such as researching group homes for Mom, and being in contact with Mom's doctors, and getting a hospice for her. My friend said that when her parents were dying of cancer, she backed off and buried herself in her work. From what she said, I don't think it was the physical labor she did not want to encounter (ie flying about the country) but the emotional labor. Basically, she couldn't be bothered with dealing with feelings. It is true that it is very emotionally draining, whether or not you are caring for a sane or not sane parent. I think one of the reasons why we are here on this planet is to experience the range of emotions, whether we like them (the feelings) or not, they are what make us human. And we are always with the people we are supposed to be with, for some reason, even those who abuse us, or those we abuse. We are not meant to abuse, ever, but that is the free will we are given. Anyway, my tangent boils down to the fact that we must be courageous enough to enter the emotional realm, unless, of course, the emotions are unmanageable and become dangerous to ourselves or others. Dancer, I know many people who have bi-polar, for example. I know people who have been jailed when not on meds, because there was no where else to "put" them! Sometimes I just don't know about our mental health care system. L, PL

In Arizona, there is a HUGE demand for home health care, caretakers, home helpers and the like! We must be the retirement capital of the country because there is an endless demand for these services! My own mother requires a caregiver but this woman has no formal training, just years on the job and good references. The woman that lives with my mother manages many homes for those who require assisted living and employs people to live there and take care of the residents.

She will buy a large home, put some of these people who can't live alone in a bedroom for a fee, and have another live-in caretaker run the home. She is on call for emergencies. I think she has SOME medical education from long ago but nothing like a degree. She works with the mentally disabled most exclusively but makes quite a bit of money doing it.

I was a bit taken aback when she told me that she was semi-retired and took "my two favorites," to live in her home with her. That was my mother and another woman. So, in a large home, there is my mother with a room and another woman whose mother is still alive and comes to visit often. Sometimes I think she "took," my mother with her into her own home because my mother rarely complains and has a good trust fund to tap. It's good that my mom has a fiduciary to watch her funds!

But, that is off the topic a bit. Home health is a booming feild in Arizona!

dancer9

Dancer, that is not off the topic. I don't even trust fiduciaries! And, as a real estate broker, I have a fiduciary relationship with my clients, especially when handling their earnest money. My uncle is the fiduciary for my 101 year old grandmother (her son) and I certainly don't trust him. As for group homes, that is not off the topic either. My mother will most likely go to a group home. I would worry most about is of course elder abuse. And how the caretaker deals with incontinence of the patient, as my mother is very modest and easily embarrassed. Anne, would you believe I love to paint houses too? Only inside, though. And now I can't do much unless a massage therapist is handy. The seniors in AZ need house painters too. As for caretakers, yes, AZ is the place to be. You can get certified as a PCA, personal care attendant.

Anne,
In many cases, being a caretaker does not require any special classes and you can be trained on the job. For example, the woman who caretakes my mother has many homes and she trains her staff while an RN comes in a few times a month or more if she is needed and checks on the health of the people. There are many situations like this.

There is also a certificate one can get from taking a class for a certain length of time that certifies them for more responsibility for caring for those like my Mom. My own mother requires no care, really. She cooks her own food, can take care of herself completley and only needs rides to the stores she goes to and just watched to see if she is worsening mentally or if she is sick in any way. If she is ill the caretaker calls a doctor and makes an appointment for my mother. If she needs money the caretaker calls my mother's fiduciary and discusses the need for it. For this she is paid monthly. She does this for two women in her home, (the other woman is also fairly independent, ) and she collects money for her. Her other homes have more women or men living in them but she has employees that do the job in those homes for her and she checks in with them every day. It is quite lucrative for her. My mother does not yell or swear and does not give anyone any trouble, she just refuses serious medical care from time to time and then the caretaker must call the fiduciary and other people to take care of that. ( come to think of it, I don't raise my voice either!) The other woman in the home has a mother who visits her often and takes her out, like I take my mother out, so the caretaker pretty much just watches the home and the women. In the case of my mother she does not want to live with her children and be a burden. She also likes to have her freedom and this set up gives her a chance to be free but be watched. There is one person working in the home and he is paid but trained by the caretaker, and not specially trained for the work. I like him and he does a good job there in helping out, even if it is just answering a phone because my mother is afraid of phones but will talk on one if someone answers it! ( yes, wild, I know.) There are many positions like his.

Princess, the fiduciary that we use is a state employee and as we, her children, are named in the trust also, we recieved reports as to where money has gone four times a year as well as an accounting as to what assests are left in her trust as well as what new ones she has aquired. (For example my grandmother died two years ago and my mother was her sole heir so she received those monies too.) We can challange the fiduciary all we want and because she is a state employee, she works in the Pubic fiduciary's office. I would never trust my trust fund to any stranger. We put the money there while my mother is alive so she is watched over as a "protected person," regarding her money legally. If has worked out well. The money has been in this woman's hands for a long, long time and she has invested well and put up with my mother's strange needs such as "Get that T.V. out of here! They can watch me from it!" LOL You have to laugh at a certain point. I'm just having a bit of a hard time knowing that they must force the medical care upon my mother and it still makes me sad to see that have to happen to save her life. It's not often but it's time again!

Best,
Dancer9

Thank you for that, Anne. We have been through some very painful times since my mother stopped being "here," when I as thirteen. I had control over what was done when I turned 18 as my father divorced her and I was the child around that was of age to sign things. The first time I had to commit her for her health I was 18 and crying hard tears. I had a therapist there to talk to me and explain to me that if I did not sign, she would die. This was so very painful to me when I was that young and my guilt was overwhelming!

Had I not come from a family with money Im not sure how I would have coped with respect to that. I worked very hard in my life to build enough money NOT to have to work and if I had to support her, I would have. Although she treated me pretty badly when I was a child, I love her and I will always do what is right by her.

dancer9

Dancer, you have your heart and your hands full. That had to be shattering to hear that you needed to commit your mother or she would die. Wow, what a concept to put on a child.

It was an experience like no other, certainly! I grew up in a hurry that day! I had to find a judge to sign the papers on a Sunday. I found on at his families picnic through family and went to ask him to sign the papers crying because the ER would not admit her without them as she was refusing treatment. They said she could die and I was hysterical! He signed them and I took her in.

Two days later she was better and not angry at me. That disease is something else!
dancer

Thank you, Anne
dancer9