Wellness

[mistriTsquirrel]

On 3/11/2014 victorian vixen said:

To Mistri and all the other ladies who have posted.

I am so thankful to you Mistri for starting this thread, it will not only help you, but lots of others in the same or similar situation.

I have suffered from severe depression for probably most of my life ..... I'm 65. I describe it as living in an eternal black hole.

I am unable to write more at this time, but I will definitely be back to read more of these inspiring posts and to share some of my own experiences.

This is a much needed sisterhood and I hope it continues.

I am honored to meet you ladies.

Thanks, victorian vixen.

Many people do not understand that chronic depression is a chemical issue...and one that can be lifelong.

There is a push by some to "pull [ourselves] together" by people who can't seem to tell us how to go about doing that.

In starting this thread, I was hoping to find practical suggestions to help me manage my depression. (I am not foolish enough to believe that it will just go away at some point.)

I've learned a lot from the posters on this thread, and on these boards in general. People--for the most part--have been constructive and supportive. Unfortunately, some have not been...but we have no control over that, right?

Anyway, the activity on this thread has slowed down, but I still come back to check for new responses or to re-read old posts at times.

You are more than welcome here!!

I hope you find it to be a place of healing and understanding...and that if any posters crop up whose intentions are not in line with that, you are able to brush them off...or punch them in the face with your words, until they go away. That's what I do. I can help you with that.

Love,

mistri

[mistriTsquirrel]

I don't know if anyone will see this, but here is my update...

My father has started the downward slide that we knew was coming...we just didn't believe it would happen so soon. A month ago, he seemed okay.

Now--although he gets up and dresses in the morning--he spends his days drifting in and out of sleep. He talks a lot in his sleep, and when he wakes, he doesn't realize he's been sleeping...he claims he was awake the whole time, even though it's obvious to others that he was asleep.

He is dizzy much of the time, he repeats himself, and his speech is slurred at times.

He isn't eating as much, and his weight is starting to go down again.

When I was over yesterday, he had a coughing fit. I asked him if he had any cough medicine to take; he said he had cough drops. I asked him if he had cough syrup or something, and I said his cough sounded pretty bad. He said it was because he'd just eaten. I asked him why that would make a difference; he said, "it just does." (He recently completed a course of antibiotics that were supposed to clear up his cough if he had a bacterial infection...but the cough persists.) The cough was one of the warning signs of esophageal cancer that he had--but it wasn't recognized until it was too late--and now the cough is back again. I also noticed that my father cannot walk from the couch to the kitchen and back without being out of breath.

My father had a CT scan a month ago that showed that the chemo is not working. His form of cancer is a fairly aggressive one, and I fear it has become worse since the last CT scan. Also, he has not had a scan of his head recently, and I fear the cancer has spread to his brain.

His case is being presented at two different hospitals' tumor board meetings. No one seems to have answers, and while we are waiting, my father is getting worse.

My brother called my parents' house while I was there. My father was asleep on the couch, and my mother--who is extremely depressed--was also sleeping. I gave my brother the update on our father's decline. He told me he was calling because he was driving home from work, and he had an overwhelming feeling that there wasn't much time left (for our father). I told him I thought he was right, and he cried.

I'm finding it difficult to keep a foothold. I feel a responsibility to be the strong, sane one. However, just when I start to feel that I've adjusted to the current situation, the situation gets worse, and I feel uncertain again.

At this point, I am fairly sure that my father will require hospice care within a month or two. We wanted more "well" time with him, but he is clearly no longer "well."

My family is in crisis right now, and I am having A LOT of trouble sleeping. It is affecting me to the point that I am making stupid mistakes at work, etc., and I'm thinking it will soon be time to take FMLA leave to take care of my family and myself.

One of my worries is that my mother, my brother or I will require a hospitalization (for depression). My brother has started to say things that aren't exactly "crazy," but they are kind of "out there," and I'm wondering if he's starting to lose his grip on reality. He has also lost more hair than my dad lost during chemo. My mother is almost always sleeping when I call or come over. She has already had a blood clot in her leg once from lying in bed, depressed, for days...I'm afraid she will have another. I'm also afraid that, after my dad dies, she may decide not to move near my brother (which is the plan), and she will become a full-fledged hoarder and hermit. I'm going to do my best to help her (as I am now), but I cannot spend the rest of my life in this city as a waitress. I plan to move away and get a second bachelor's degree...but I have to make it through this first.

I am depressed, as I have nearly always been. The county I live in--that I get my care through--declared me "disabled" years ago, due to my recurrent and severe depression. I felt hurt when I found out that they consider me "disabled"...it was a big blow to me. I feel that this is a test; if I cannot make it through this, I am indeed disabled.

I will make it through this.

*******************************************************************

[lolakimono]

Mistri,

Please call hospice. Mostly it is for the last six months, but some programs will come in at 12 months or more. They do important work. Even if he is not at the point where he "requires" it, they can be of great help to you and to your family. They are also trained to recognize the "signs" and will be able to give you a good idea of how much time is left. His doctors can recommend hospice for him, so you aren't the "heavy."

The only thing I can say is that being a caregiver is very draining. Your first priority is to take care of yourself as you cannot control what others do or don't do. Put your health first, get enough sleep, and do something for a release, whether it's reading, exercising, laughing, dancing, etc.

In the meantime, I'm sending you cyber hugs.

[mistriTsquirrel]

Thanks, lolakimono.

My current battle is getting my mom to agree to let my brother and I clear out the den when he is in town. The den is on the first floor, and it will be necessary for my father to have a bedroom on the first floor for his safety, if he wants to continue to move about the house while he is still able. My mother is resistant to the idea; she seems stuck on the idea of cleaning out the basement. She says he can have a bed in the living room. I told her he probably won't want a room without a door that can be closed if he wants to close the door. She seemed overwhelmed, and I think she is thinking we will have time to "do it later." But we can't wait until "later" when we don't know how quickly he will decline.

I think I will leave a note behind when we are leaving an appointment, to let one of his doctors know that we need him/her to tell us when to call hospice in. I do not want my father to see any one of his family members as the bad guy, but I know we will need help soon.

[mistriTsquirrel]

I just got back from my parents' house. My father is even worse today than he was yesterday. He wasn't even sitting up on the couch when I got there...he was lying down because he didn't feel well. I asked him if he was having any pain. He said "no." I asked him if he was nauseated. He said, "no." He said he was just tired.

Earlier today, my mother found him standing in the doorway of the bathroom. She asked him what he was doing, and he said he couldn't remember how to turn the light off.

She also noticed, at some point during the day, that his pants were wet. He had urinated. When my mom asked him if he had urinated, he didn't know.

These things happened while I was at work. I called my parents' house after work, and my mom told me what happened today. I went straight to their house. My mother and I helped my dad to bed. He nearly fell 3 times on the way there.

I told my mom to call my father's primary physician and the oncologist they interact with the most right away in the morning to leave messages about the urgency of the situation.

I spoke with my boss today--before I knew about everything that happened today--and asked to be put on "casual employee" status instead of having a regular schedule, but told him I could work this week's schedule. Now I'm not even sure I'll be able to work this week. It looks like I need to get FMLA paperwork started right away.

I am scared s***less. I feel like I am bracing for impact. It isn't that difficult to remain calm and reassuring around my parents...but when I am alone, my mind is consumed by anxiety, fear and sadness. I feel like I want to yell out for help...but I don't even know who I would yell to. It's just me; I have to help me...and everyone else.

[aziza udoja]

On 3/29/2014 lolakimono said:

Mistri,

Please call hospice. Mostly it is for the last six months, but some programs will come in at 12 months or more. They do important work. Even if he is not at the point where he "requires" it, they can be of great help to you and to your family. They are also trained to recognize the "signs" and will be able to give you a good idea of how much time is left. His doctors can recommend hospice for him, so you aren't the "heavy."

MISTRI, HI PRECIOUS! I WILL KEEP THIS BRIEF BECAUSE I AM TYPING FRIM MY ANDROID PHONE AND THERE IS SOMETHING WRONG WITH THE BROWSER( IT SUDDENLY DROPS WHILE TYPING),BUT I WANTED TO TOUCH BASE WITH YOU.IT IS IMPERATIVE THAT YOU FOLLOW LOLAKIMONO( LOVE THAT MONIKER! )AND HER SAGE ADVICE ASAP.IT SOUNDS AS IF YOUR DAD IS RAPIDLY DETERIORATING AND HE IS GOING TO REQUIRE 'ROUND THE CLOCK 24 HOUR CARE.IT IS VITALLY IMPORTANT THAT YOU FOLLOW THROUGH WITH THIS AND IT IS INCUMBENT UPON HIS PCP AND TREATMENT CARE TEAM EXPEDITE TGE PROCESS.IF YOU HAVEN'T DONE SO ALREADY, PLEASE START THE FILING PROCESS FIR YOUR FAMILY CARE LEAVE SO THAT THE NUMBER ONE PERSON IN ALL OF THIS,THAT'S YOU MY DEAR,START RECEIVING THE MUCH NEEDED CARE AND THERAPY THAT IS NEEDED TO HELP KEEP YOUR ANXIETY, DEPRESSION,AND FEAR IN CHECK.DEPRESSION IS AN EXTREMELY INSIDIOUS DISEASE AND CAN BE MANAGED SO THAT IT DOESN'T BECOME ALL-CONSUMING AND PARALYZED AGAINST LIVING A BETTER AND SANE LIFE.I HAVE LIVED WITH DYSTHYMIA MOST OF MY LIFE AND THERE ARE MANY OTHER COMMONALITIES BETWEEN YOY AND I, BUT MORE ON THAT LATER.I HAVE MORE TO SHARE WITH YOU AND OTHER QUESTIONS FOR YOU,BUT I WILL TEND TO THIS LATER.I WILL FIND THIS THREAD AND OUR CONVERSATION WILL CONTINUE.UNTIL THEN,PLEASE KNOW THAT I CARE ABOUT YOU,YOUR DILEMMAS AND PLEASE: KEEP YOUR HEAD UP.YOU WILL BE O.K....I PROMISE YOU.

The only thing I can say is that being a caregiver is very draining. Your first priority is to take care of yourself as you cannot control what others do or don't do. Put your health first, get enough sleep, and do something for a release, whether it's reading, exercising, laughing, dancing, etc.

In the meantime, I'm sending you cyber hugs.

[aziza udoja]

HI MISTRI, THE SPELLCHECK ON THIS PHONE AND KEYBOARD IS VERY PROBLEMATIC AND IT ALSO IS VERY DIFFICULT TO POST ANOTHER PERSONS POST AND RESPOND TO IT.I HAVE TRIED BUT FOR SOME STRANNGE REASON,MY COMMENTARY IS SPLIT BETWEEN THE QUOTE.MY DEEP AND HUMBLING APOLOGY TO YOU AND LOLAKIMONO. TO YO

[mistriTsquirrel]

On 3/30/2014 aziza udoja said: HI MISTRI, THE SPELLCHECK ON THIS PHONE AND KEYBOARD IS VERY PROBLEMATIC AND IT ALSO IS VERY DIFFICULT TO POST ANOTHER PERSONS POST AND RESPOND TO IT.I HAVE TRIED BUT FOR SOME STRANNGE REASON,MY COMMENTARY IS SPLIT BETWEEN THE QUOTE.MY DEEP AND HUMBLING APOLOGY TO YOU AND LOLAKIMONO. TO YO

It's okay, aziza. I can tell which words are yours by the caps.

It is unfortunate, but it has taken my father's illness to bring my own purpose into focus. I have a counselor, and I am on meds. I can also tell you that I am positive that I am further along in the grieving process than my mother and my brother are. I know they are depending on me to be a rock.

I've been reluctant to ask my dad certain questions, but my mother and I are at odds about one thing: she is scared he will not get adequate care at home, and wants him to be inpatient at hospice. I am absolutely opposed to him dying in a place where he does not want to be. I know that it is time to ask him if he wants to die at home or in a hospice facility. I'm pretty sure he will want to die at home. I don't want to fight my mom on this, but I will. He has every right to die in the home he worked for. I told her I would move in with them to help out, and I'm prepared to let her stay at my home when she is overwhelmed...but I will not allow her to bulldoze him on this issue.

I don't know if I should ask him tomorrow, or if I should ask him when the topic of hospice is discussed with him when we take him for an appointment. I'm thinking I should ask him beforehand, so that he will have time to think about it, and he won't be completely blindsided by talk of hospice. On the other hand, he has been actively trying to avoid thinking about his fate...and I'm not sure he will be able to handle everything that is about to happen. I'm sure it will be very painful to hold my dad as he cries...but I think that is what may happen...I just hope he will be able to let all of his sorrow out, and allow people who love him to hold him and comfort him.

After all is said and done, I will still be standing...I'm just not sure how to be what I need to be during this time.

[mistriTsquirrel]

I've decided to copy a reply I made to a poster on another thread so that I have it on this thread.

I consider this thread to be--among other things--a record of "my story," and since my story continues to unfold, I feel I should post info here to fill it out. If I were to post random, disconnected posts, the meaning would possibly be lost...or difficult to find, anyway.

Anyway, here is the bulk of my reply from another thread:

My mother and I were thinking that my father's cancer had traveled to his brain. When they did a CT scan and then an MRI of his head, we found out that he'd had multiple strokes throughout his brain. He is in the hospital now, but he may be out as early as Monday, and my parents' house is not ready. What's worse is that my mother has talked about putting my dad in a home if he doesn't "listen better." He is aware he's being "disobedient," but he isn't doing it to spite her...I think he has psychologically minimized how ill he is, and I don't think he's willing to accept the idea that he is--in many ways--helpless.

My brother--who'd arrived in town late Wednesday night--sent me multiple text messages while I was at work, asking me when I would get to the hospital. He even asked me to bring cigarettes. I was shocked. (He is a health nut who mountain bikes for miles, eats organic food, etc. and he hasn't been a smoker since he was in college, about 15 years ago.)

When I got to the hospital, my brother came out to my car to smoke (I had to buy a pack, since I quit last year, but once he started talking, I went ahead and lit up too). He was livid. Not only did the hospital staff not seem to know what they were doing, but he'd had it out with my mom. She doesn't seem to realize how seriously ill my dad is right now, and she seems to resent the fact that she will have to participate in watching over him. She has her head jammed so far up her rear-end that she can't prioritize anything, and she only seems to think of how all of this will affect her.

She knows that I will be moving in to help (and only picking up shifts at work when possible), that we will get a nurse to help as well...but she still seems concerned about how she's going to handle caring for him.

I realize that she is depressed, and that she would not be up to the challenge of taking care of him by herself...but she will not be taking care of him by herself. My boss agreed to take me off of the schedule starting on Monday, and I will not be working unless I know that my dad's needs will be met during the time I will be at work. What scares me is that my mom doesn't seem to understand/care to the degree that she should. Her thinking is along these lines: "If he doesn't wait for someone to help him to the bathroom, and he winds up falling, it will be his own [darn] fault." It's appalling and worrisome. If he winds up falling while she is supposed to be watching him, because she ignored him...I don't think I'll ever be able to forgive her.

We had an argument along those lines after we went to U of M for a second opinion, months ago. He was going to begin chemo, and I knew his brain would be "foggy." I asked her on numerous occasions to take down the baby gates that keep the dog in the kitchen and family room area, because I was afraid he would fall over one of them. (She was concerned that the dog might pee on her carpeting.) She originally told me she would take them down (in order to placate me), but she was lying. She had no intentions of ever taking those gates down. I told her that if he fell over one of those gates and injured himself, that I wasn't sure if I'd ever be able to forgive her. She told me that would be my problem. I was also warned to never raise the issue again.

I'm not backing down on this, however. I feel like I'll have to watch her while she's watching him. I think I may need to talk to my dad about having his healthcare power of attorney switched from my mom to my brother and/or myself. I don't believe that she is motivated by his best interests, his needs or his wishes...and I think she may just be too messed up to even realize how deplorable it is to "make him pay" if he doesn't "obey" her.

She doesn't seem to have much sympathy for him. I wish she could be in his shoes for a day to know how it feels to be him.

I was watching him eat today. He has improved with using the utensils to eat. I told him I was glad to see that he was doing better with his eating so soon after his strokes. My brother looked uncomfortable watching him eat, but I looked at him and I felt proud.

My mom has a tendency to try to take over when he struggles, but I don't necessarily think it's good for him. As long as he can't hurt himself, I'd prefer that he go about the business of re-learning whatever he can re-learn, and feeling like he has some sort of control over his life. If it means he drops a little food on himself, so what? She wrings her hands over things like that, and it bothers me that she can't seem to see what matters.

Despite his strokes, he still has a quick wit. The nurses, doctors and other hospital staff seem to enjoy his wisecracks (as long as they realize he's just joking).

Today he had another bone biopsy on his femur. I guess it took the doctor a good bit of drilling and hammering into the bone to get the sample, because the lesion was harder than anticipated. Despite his ordeal, my dad was joking with the nurses in the recovery room. When he was being wheeled out of the recovery room, my brother and I thanked the nurses, and my dad said, "yep, thanks for beating the h*ll out of me with a hammer." The nurses got a good laugh from that.

I'm emotionally exhausted. I don't feel nearly as stressed about the prospect of caring for him as I do about the prospect of having to deal with my mom's dysfunction. I've been trying to help her for years, but she doesn't want to help herself...and now we all have to suffer because of it (again).

My brother mentioned something to me tonight that made me think...

Years ago, my mom went back to college and finished. Then she had a menial job at a hotel that she only took because her sister convinced her that it would be good for her to get out of the house and work (and it was good for her, by her own admission).

Then my mother fell and suffered a really bad broken ankle at my high school (I had called her and asked her to bring me something I'd forgotten and needed, and she slipped and fell in the entryway).

Tonight, my brother said that he noticed a change in my mom after she broke her ankle and was unable to do much of anything for months. I'd never connected her change in behavior to that incident until tonight...and I wonder if--on some level--she blames me for the state her life is in today (because she was doing much better before the accident). I still feel guilty about the fact that I called her that day and it ended with her falling and injuring herself badly.

I now wonder if she is feeling betrayed...like I caused her to fall, and now I'm trying to prevent my dad from falling.

I don't know for sure that she is thinking that, but she may be...and I'd like to discuss things with her and see if that may be underlying some of her behavior. I think I may try to catch her off guard a bit with a question or two that she isn't prepared for, so that I will get an answer from her that isn't colored by current circumstances. I want her to know that I never would've called her if I'd known that she would've been hurt that day, and that I still feel guilty about it. I also want her to know that if she was the terminally ill parent who had had multiple strokes, I would be advocating for her. I already told her that I'm not playing favorites, that I would stick up for her just as fervently if she was the ill parent, but I'm not sure that she really heard me.

If this incident from the past is coloring what's happening now, and I can get through to her that I am extremely sorry I called her that day, that I never would have if I'd known she would be hurt, and that I would do everything possible to prevent Dad from putting her in a home if circumstances were reversed...maybe she can heal somewhat.

I'm really glad my brother said what he said, because--if it can help this situation--it is a buried treasure we've unearthed, as far as I'm concerned. I do feel bad that she had to go through what she went through, and I'm more than willing to offer a heartfelt apology to her and admit that I shouldn't have called her that day to save me from the consequences of my own forgetfulness/carelessness.

I hope I am onto something, but I just don't know.

(...to be continued...)

[lolakimono]

Mistri,

Here are a few pieces of (unsolicited) advice.

1) Get your dad some Depends. Then if something happens there will be no "urgency" to get to the bathroom if he is moving slowly or a caregiver is not around.

2) Consider doing something with the dog. Instead of moving in with them, could you take the dog to your place? Could the dog be kept in a bedroom or in the basement so that you can open up the house and your dad could have access to all areas?

3) I don't know about changing the healthcare directives because in your state the spouse's wishes may "trump" those of a child.

4) If you have a social worker (or hospice) come out , a neutral "third party" evaluation might be able to convince your mother that the house is not safe for him right now, so she needs to make changes or they will have to find a place for him outside the home.