The Caregiver & Dysfunctional Families: How are you doing?

I like Kathy's Song, we.ve all gone off to look for America, its the song about a train ride, and he man in the gabardine suit is a spy.

Yes the son here, went through the death of his father, died of prostate cancer, at the age if 92, after he suffered with crippling arthritis for decades.
The son made the accommodations, step in shower, changed all he doors to the ones, with handles instead of knobs, made his mother two kitchens and two new bathrooms, the new vinyl windows, never got paid back and basically was thrown out of his mothers building, like a bum, and me even less...I found out I have no standing to get paid, except to sue the trust, in the end. Does anyone know what else? Does not qualify for Gov't. programs, because they sold her residence and she has liquid assets.

I don't so much want to leave, the 87 year old (just 4 of her 5 of her narcissistic children) because she has rights to not be in a nursing home, but so far, do not know what to do, they refuse to pay me outright and the only alternative is to quit, but why should I be placed in this predicament, when she is doing well in my care?

Why did I ever doubt for a second you guys would be here with positive advice? Actually, I didn't doubt it… just was so pissed for a good while there that I couldn't bring myself to write anything.

Bottom line: according to paperwork I have and doctor's visits, no doubt the mold made me sick. And since it isn't acute sickness, but rather this chronic condition with varying symptoms, it was something that just sent me to bed.. and I didn't get up much. I had no clue how to treat: supplements, juicing, cardio - I was doing it. I learned how to love and have compassion in spite of my (crazy hurtful want-to-choke-him) father… but none of that really worked. Ok, now mold is gone. Basement is gutted. I've had 3-4 months of almost complete rest. I feel ready to tackle anything and everything again. And YES, dad is getting placed. Except he waffles and without family (really just older bro and I) agreeing 100% to rent place and stick him in it, regardless of how he feels about it on that given day, then nothing gets done.

Things will get better quickly, I believe that. Its been a couple of years of learning lessons and now I'm prepared to cut to nuts and bolts and get results… darn it! Lol!

Ok, so, like I said, a lot of my past few posts have been about me finding my voice again to speak about what is happening in my life. I can only benefit from this, and you individuals are so… …. …. wonderful. And I thank you.

Ok, 2nd post in 2 days! Woot woot! I'll figure this out. Love you guys, thanks.

Iwentanon - ultimately, it looks like the family has the choice whether to pay you or not. I gather they did not ask you to care give, but rather you took it on out if the goodness of your heart - essentially you volunteered. At least this is as I have understood it from reading your posts. It is a difficult situation but just because she is doing well in your care does not oblige them to pay you. Some might think there is a moral obligation, but that seems to be lacking in them. It puts you in a very difficult situation.

(((((((hugs)))))) Alison and welcome back. So sorry about the illness due to mold, and stress no doubt, but it sounds like you are on the mend. Hope you do get to the nuts and bolts of placing your dad soon. You need a break. We all get a little lost once in a while. Normal??? What's that??? I gave up on normal a long time ago. Note the Queenism: "Once she decided to love and accept herself just the way she was, everything else fell right into place." Love you too - just as you are.

Mother went to hospital, I had a day free of phone calls, and then one call this afternoon from the hospital which just about freaked me, but I found out it was from her doctor there. We had a very poor phone connection but got through the basics, He described mother as tortured, and irrational and unable to make decisions in her own best interests. I agreed. He said she is quite agitated. I agreed to that too. Then he asked if I would give them permission to put the meds in her juice and described the possible side effects. I gave him permission. This is a weird thing ethically. It is not the same as carrying out her wishes as she still is sound cognitively and does not wish to take the meds, but that she is irrational, self destructive, and unable to make decisions in her own self interest, so the decision that the medical team recommend is being made for her by her agent - me - in order for her to get the best treatment for her condition. She never has wanted treatment for any of her mental conditions, but then she has never been in her right mind either. It is an ethical issue and I need to do some more reading on it. In my heart, I feel it is the right thing to do and am backed up 100% by my kids, Gary and a few other family members, excluding my sister who I have kept out of the loop. She would not agree, I am sure, as, in her words, mother has a few emotional problems, but after all she is over 100 years old. That, of course, coming from someone who has a few emotional problems herself. I hope and pray that the small dose of meds they will give mother will have the calming effect it had in the summer. The paranoia had increased considerably so she may need a higher dose. The doc and I will talk again on Monday.

Another problem that has cropped up is that Laura, the Director of Health and Wellness at the ALF, who I chatted with after mother went off in the ambulance said that she wasn't sure that mother was suited to that ALF any more. We both feel that mother may need a facility with a mental health mandate. Laura said it will depend on the recommendation the hospital makes when mother is released. I asked her if they had anyone else like mother and she said "No"

We will cross that bridge when and if we come to it. Gary has been forewarned. He is a great mover.

Take care all and do something good for you. ((((((hugs))))

Emjo Rest assured you have made the right decision. If mum is returned to the ALF and has free choice she will revert to her former behavior and refuse the medications especially if she detects they are in her juice and they have to take the next step to make her compliant. This is an almost impossible decision for a caregiver to have to make for a loved one and especially hard as one gets older and has ones own health problems. as long as you have complete confidence in the MD let him make the decisions. Mum can't and neither should you. You have made the decision to put her in the care of experts so return to your main job which is being a daughter and you have always gone above and beyond being a good one. Lean on the kids and Gary and only tell sister when Mum has been transferred to a secure mental facility. treat her mental illness as you would a physical one and have her cared for by experts. She does not have the capacity and never has had the ability to be content with her circumstances so her reactions now are not due to anything you have to take responsibility for. Many many gentle hugs. God is guiding you. Blessings

Thank you, Veronica - your words are very comforting. You are right she will revert and continue to get worse, if given the opportunity. I think Laura, the Director of Health and Wellness, said that mother complained that the male LPN on night shift had inappropriate behaviour towards her. I was so concerned about mother getting off in the ambulance I didn't clarify but will on Monday. This is just not workable in that environment.

As far as making the decisions, that is for the medical team to do, but, as mother's agent (personal directive) I have to endorse their decisions or they cannot act. And before I endorse any action, I need to be sure that I believe it s the right thing for her.

Just thinking aloud here - Mother throughout her life has taken most meds prescribed for any physical condition. It is part of the illness to refuse treatment for her mental condition. I think if our positions were reversed she would make the same decision for me that I have for her. She actually made very good and some tough decisions regarding my father's care. I have thought about a parallel situation where a person was born with a disability and not capable of making a rational decision about their treatment. In cases like that the person has a guardian and the decisions are made to give that person the best treatment available. Mother has a serious disability in the form of mental illness, yet has had the freedom to refuse treatment. Had my father been a stronger man he might have pushed for treatment for her, but he used alcohol to cope. Believe me, there have been times when she could have been hospitalized before. So, do you respect the wishes if someone who has a serious mental illness is irrational and not able to act in their own best interests. I don't think so.

I agree with telling my sister only when/if mother is moved to another facility and only about the move, nothing else. God may spare us and see fit to take her home before that happens. One step at a time.

My suspicion is that mother will sense that she is being given the meds, as she is very self aware, and will stop eating or possibly stop eating certain things, as well as creating a fuss. She refused to eat for a day or so last summer at the other hospital because she thought they were putting meds in her food. Her paranoia is so much worse now that she may think they are poisoning her. Anyway, I know they have the means to deal with this,

It is not the first time I have made a difficult medical decision. This situation brings me back to when my Gordie was dying and we were asked/told to make the decision to pull the plug. No parent should be required to make that decision. I think hospitals don't want the responsibility or are afraid of being sued. I suppose there is a philosophy that says peopke do better

oops - do better when they take some responsibility for the decisions that are made and to a degree I can agree with that. Some things are tough no matte

oops - did it again no matter how you look at them.

Think these long nails aren't helping me on the keyboard. Time for a mani and pedi - some self care.

Yes, God is guiding me, and for that I am so thankful.

Emjo..... with your mother @ age 101, there is an end in site! Hang in there! Hugs to you... you are supportive to many!

thx norest - with me at 76, frankly that can't come soon enough. Not that I do not wish her well, I do. Physically she is very healthy - no life threatening conditions at all. She is on thyroid meds, BP meds, reflux meds and that is about it. She could go on a long time yet.

emjo...... She could but probably not..... statistics are in your favor! Maybe this recent hospitalization is a sign of change!

That is true. Statistics favour her passing soon. It would be a blessed release for her. At her age they tend to go suddenly/quickly, though she is hospitalized for mental illness not physical. She had a cousin who lived in an apartment, with help from family till she was 97. One day this cousin didn't feel well and the next day she was dead. I don't think she had any major health conditions. My grandfather went suddenly in his early 80s from a heart attack. Up until then he appeared very healthy. Better to go that way than to linger. Mother wishes that she was dead. I don't mean the suicidal thoughts, but she is tried of living.

*tired* - my brain is fried...

As long as it's not fired..! xxx

I w

what is going on here????

cm - I write fired first and had to correct it

lala land here...

Joan~ Hugs!! I am sure you are experiencing a whole range of emotions over this situation with your mother. If the meds can control the demons in your mothers mind, maybe she will like herself better and accept it. I know it is hard to keep a mentally ill person on their meds though. You have made a good decision for her. Hugs again and take time to relax now.

thx sharyn. I don't see any way of mother being kept on meds unless she is permanently in a mental heath facility where they conceal the meds or administer them by injection. She is adamant about not taking them. If she was less physically well and in a nursing home for example, or even the next level of care up from where she is, they could probably conceal the meds in her food on doctor's orders. But she is too fit for those places, so there is no way to conceal the meds that I can see. Maybe the medical people know a way. Her good physical health is working against her here. I think she will have to be in a more controlled setting.

A whole range of emotions for sure.

Just

again!!!

Just talked to ex and he is anemic - which would explain some of the symptoms. Everything else is in acceptable parameters. Time will tell how much getting his hemoglobin up helps. I know that anemia is a bigger problem in someone with heart disease and can be caused by the heart disease, so it can be a sign that the disease is progressing. I suspect that is the case and not great news then. He sounds very tired.

emjo, the AOT is her last chance to cooperate. At the psych center here in Buffalo, the AOT's go to the "cottages". They can leave during the day, but if they fail to return by curfew, if they refuse meds, if they outburst, then they are moved to the main building lockup floors. My sister was in the West Seneca DDSO lockup for a year before she could return to the community. She was in her twenties and that was a long time ago. My neighbor's daughter bounced back and forth from lockup to cottages for many years, until her schizophrenia could no longer be controlled by any meds. Your mother may be at the end of the roller coaster ride. Cognition does not give her the right to make harmful choices. My sister knows caffeine will set her off, but she wants it anyway. We simply don't allow her to have it. Got an MD to order NO CAFFEINE. You are doing a fine job, she's just going after the forbidden fruit.

Thx pst. That is kind of what I figured. I suspect and hope that mother is at the end of her roller coaster ride. In many ways, she has to be dealt with as a younger person because of her fitness level, though the stress of this could more easily precipitate something serious in her physical health. Mother wants to be in control - always has - part of the personality disorder. I think that is the "forbidden fruit". At some cost to those around her, she has maintained control, but, the paranoia has brought her to a new level of illness and one in which she has lost control. Although their philosophy is to work towards release to the community, she may spend the rest of her days in a mental health facility, possibly a lockup.

I am not good at all. I have been the caregiver for my mother for two years now. I cant find a nursing home that will take her because of her mental status and i can't find a Psychiatric hospitals that will take her because of her health status. She is a stroke patient with aphasia and also has bipolar schizophrenia. I have been tied down for two years. it would be different if this woman loved me growing up but she was abusive and mean to me made my life miserable and still is i am losing my mind

Hi ocd - you will find much company here. ((((((((hugs))))) Many of us are survivors of an abusive or at least neglected childhood. Re a placement for your mother - apparently once a senior is hospitalized for whatever, you can refuse to take them home saying that you are not capable of providing the care that they need. Have you contacted your local Agency for Aging and/or Social Services? This is way too much for you to handle. Your mother is very ill. Once in hospital they can only release her to an appropriate placement. There was a lady on here a year or more ago whose mt

to continue - mother

mother is mentally ill, was living at home with her and creating havoc. She got in touch with social services who took over care of her mother and placed her, and this lady had-s had very lit

little to do with her since. You need to reclaim your life, by getting the professionals involved, They have the resources to care for your mum - you don't. There is no way an individual or family should be expected to care for a very mentally ill person. Please check with the places I mentioned and also your doctor, and your mother's doctor. Check also with your local Mental Health Association. In any case, keep in touch with us here. Some of us have an idea of what you are going through. It helps even just to vent and find out that you are not alone. more ((((((hugs))))) and prayers

Everyone - I am obviously hitting some combination of keys to submit. My brain works faster than my fingers which try to keep up and make mistakes - combine that with long neon orange sparkly finger nails and it spells trouble.

Smack me if I do it again. I need to write my posts on a word document and copy and paste and/or shorten the nails. Having the cat hug my mouse pad and rub his whiskers on my hand when I am trying to use the mouse doesn't help either.

Hi Emjo, I'm glad things are still going in the right direction it sounds like. It's so ironic that your mother is paranoid and now she really has some things to be paranoid about! I guess one blessing in her being aged is that treatment for her mental illness can now be forced on her. I often wonder what my mother would have been like if she'd had any treatment during my life so far. I guess that's all hypothetical now. Sending up lots of prayers for the best outcome for you and your mother.

sunny - read pstegman's post. Treatment can be forced on anyone at any age. I think therThe blessing was that she came to the attention of the community geriatric team. I don't know if there is such a team for younger people who are mentally ill.

i need to vent but i'm afraid if i share my thought people would have me locked up

Vent!!! That's what we are here for. We have all had our moments.