A failed caretaker...

[hearts_and_thoughts]

Hi all:

Just a quick update before I run off to church. I miss going to church and need to go. A few days ago, I went on strike and forced my son and the outside caretakers to care for Mickey, while I spent a little "me" time. My brother attempted to pull me in to his care during this time and I would just inform him that I'm on strike and will not do any more "favors" as he called it.

I put my house up for sale as it was before my brother showed up. I contacted all our siblings and let them know the current status. I contacted my Prepaid Legal service and followed their advice by serving my brother with a 30 day notice to cancel our "verbal agreement" since he wants to fight me on finding other arrangements by leaving my home.

By the way, I have also been concerned that I lack "enough" spirituality myself because I couldn't seem to walk each day without anger and frustration as time slipped by. I thank you very much for helping me to put it all in proper perspective. I obviously suffer from depression and of course, negative thinking abounds. I can keep reading these posts and keep reminding myself that I've done very well and God knows all my strengths and weaknesses and I'm right here for a reason.

Thanks again to all of you...I hope your day is filled with laughter and loved ones.

Mary Jo

 

[Carolan]

By the way, I have also been concerned that I lack "enough" spirituality myself because I couldn't seem to walk each day without anger and frustration as time slipped by. I thank you very much for helping me to put it all in proper perspective. I obviously suffer from depression and of course, negative thinking abounds. I can keep reading these posts and keep reminding myself that I've done very well and God knows all my strengths and weaknesses and I'm right here for a reason.

Glad that things are getting better! I don't think that spirituality can be quantified. We all feel anger and frustration at times, but this is just part of being human. Keep up the positive thoughts as much as possible--it will seep in!

 

[mrstadpole]

In the same boat..

Oh my goodness...

I am so sorry for what you are going through. After not having a relationship with my dad for 8 years I welcomed him back into my life and then got sick.. no one else in the family wants anything to do with him so I, like you, stepped in to take on the challenge. My dad has drained me of every ounce of energy I have. He has spread lies and rumors about my family and I to his friends and his ALS Case Manager.. even to the point of telling people that we have drained his savings and left him with nothing. He has also accused us of elder abuse. We have done nothing but love him and care for him. I work full time, my husband runs our business, we have 3 kids that live in the home, 2 that don't and we manage a BMX team.. we took this challenge on because it was the right thing to do for him.. and now we are nothing but pieces of garbage in his eyes. I understand that none of us will ever "get" what a PALS is going through.. but it's also true that they will never "get" what we go through. I, personally, have asked my dad to move on... to move out of my home and find another place to live. I will pray for you and your brother.. be strong.

 

[Al]

Hi mrstadpole. Sometimes you just have to do what you have to do no matter how unpleasant it seems. Don't feel bad. You've done what you could.
AL.

 

[CALS44]

Thank you for bringing these issues out in the open!

I haven't been on this site much, ever, and when I was I don't recall any of these issues coming out. This has been so helpful to me! My husband was diagnosed 2 years ago, and I have to deal with his dementia, anger, control, and while I am sorry that anyone else has to deal with it, I am comforted by your stories and your support of one another. I am going to visit this site more frequently, and I hope this thread keeps going. My faith is strong, it is what keeps me going, and I have been praying for a goup of caregivers that aren't afraid to talk about these issues. Well actually, I am afraid, I wouldn't dare use my real name to post - that wouldn't be good for my marriage. but you know what I mean!

 

[CindyM]

Well, what we say here, stays here, LOL! (That's a joke, folks. I know this is the internet.)

Seriously, feel free to post whatever thoughts and concerns you have. This is a great bunch of folks and nobody will judge you for how you feel. Cindy

 

[hearts_and_thoughts]

This site has been a life saver to me also!

It made me feel really good to know that my total pouring out of the events going on in my life with brutal and unattractive honesty has helped at least one other person who is going through what I am. To me, that gives meaning to my losses I've incurred. The loss of my self...my hopes, dreams, self esteem, self confidence, self image, faltering faith, relationships and financial security...all has taken a toll on my physical and mental health and this site gave me the courage to face the facts and stand strong.

God Bless you all for ALL the sewing you do with people's threads of life they deal with as a PALS and CALS; creating a beautifully blessed patchwork quilt!

Signed,
A very broken, yet blessed, CALS

 

[Shatzie]

One more thought...

As a Christian, please don't beat up on yourself about the depression. It took me a long time to realize that my depression was a physical problem, not a spiritual problem like I was raised to believe. All those years I thought that something was wrong with me, I wasn't spiritual enough. And the church I grew up in and Christian books I read reinforced that idea. But when I HAD to have medication to help me, when I saw that something I had lived with since puberty went away within days with the right medication, I knew that it had to be a chemical imbalance with me. Thankfully I have been off all psych meds for four years now and feel better than before with some of the changes I have made in my life. But the anti-depressants definitely helped me to see that my depression was a medical condition with me, much like my dad's diabetes. And that has made a huge difference in the way I feel, the way I see myself, and my picture of how Christ sees me.

 

[paula-jane]

Wow.. Mary Jo... I've not been on the site for quite some time.. and your situation has totally blown me away. I'm SO sorry for the incredible amount of anguish you have been experiencing. I'm sure you had hope for a chance to make things okay for your brother and knowing what he was in for after losing your sister to ALS. As a caregiver.. I totally understand every one of your frustrations and gut-wrenching pain, guilt induced feelings. I've been there and done that, bought the T-shirt and often wear it on a bad day. I think taking your brother back into your life and your home in the first place (regardless of past circumstances) shows that you are a compassionate and loving person by nature. You did what you thought was right at the time and even though it has clearly not worked out, you are still doing what you feel is right. Respect is necessary for a relationship to work. You've done your best.

 

[hearts_and_thoughts]

frontal temporal dementia may be cause?

Last night I came across a thread in here about dementia. The post sounded identical to my brother's progression. So, I dug further and spent half the night reading a boat load of articles of recent research dating back to 2003 to current day that shows 25-50% of ALS patients have FTD (frontal temporal dementia). Based on everything I have read, if I were a doctor, he'd be diagnosed with it now. Of course, some doctor along the way could have diagnosed it but my brother wouldn't share that information.

Anyhow, I called someone that I met when I went to Michigan with him that knew my brother over the many recent years. I asked him about his personality and explained some of what I've told you about his behaviors. He said my brother was one cool, very evenly tempered man. He worked with him from 1992-2003. He said that my brother never had any emotional outbursts even when the circumstances might have called for it. He said that the disease has turned him into a totally different person. His personality has changed dramatically according to his friend of many years.

I say "WOW". What a difference this knowledge has caused in me. It amazes me that I found all this out since yesterday morning. See, yesterday morning, still burning with acrimony and despair; still believing my brother to be fully aware and mentally cognizant of all of his actions and behaviors and decisions; I asked my brother to type a letter to me about who he is as a person. I told him I didn't care about his law degree or any certificates or anything of that nature. I want to know who he is as a person. I told him I need something to grab onto to remember him by that is beyond all of this negativity and losses. Then, last night, I find this dementia thread and read it. Then, I did all that reading on it. Then, I talked to his friend. OMG! All that anger and rage and bitterness and resentment and hatred...it just amazingly has slipped by me. I don't feel it. I feel compassion and calm and understanding. Even though he lied and did use me...it means so much to me that he hasn't intentionally caused all this harm with a full capacity to understand his actions and behaviors. The decision making problems, anger tantrums, "divaness", rudeness, disrespect, lack of compassion and extreme self centeredness are all associated with FTD. And, I believe that really explains my brother, to the T.

Well, such is life I guess...

Have a great day...
Mary Jo

 

[hearts_and_thoughts]

I just read my last post. It's pretty sad that I was actually "happy" to know that my brother had FTD! But, it's just that I had so much hateful and bitter experiences and those were the only memories I was going to have and I thought his mind was in full capacity. But, I would guarantee and lay my life down that my brother has FTD and it's his Bulbar Onset ALS that caused it AND that helps me to know that I will be able to forgive my brother for my losses because this was another casualty of the disease rather than how badly I thought about him as a person. I am a firm believer in forgiveness and am often quick to forgive...but I was holding so much anger at my brother and I wasn't forgiving him. Now I can let go of all that and be bitter to the disease where the bitterness belongs.

I tried to talk to my brother today to apologize for some of my previous behaviors and reactions, but, after a few sentences, he turned the tv on and blocked me out. I got so angry AGAIN...damn that roller coaster...I love roller coasters...I really really do...but I want off this ride...thank you very much! I was actually thinking of changing my mind about eviction and all that, but, I'm not sure that is right to do. I have too short of a fuse.

I'm frustrated that I didn't know that this could be part of his disease instead of thinking that it had to be who he was as a person. I guess that is two-fold...frustration at the fact that no one seems to know that FTD is a good possibility with bulbar onset and frustration that my brother left his entire family for 15 years and none of us knew what his personality was really like before this!

Ok, well, just in a "venting mode", I guess!

May you all have peace,
Mary Jo

 

[CindyM]

Hi Mary Jo. This is just a guess and a very uninformed one at that since I do not know you or your brother, but I am thinking that if he left years ago and broke off contact, maybe the behavior is party due to his personality and partly due to dementia. Either way you may find it easier to help him when he is not under your roof 24-7. Just a thought...

 

[hearts_and_thoughts]

Cindy:

I agree with you. It's just so hard to "force" him out of my home now that I know that he wasn't in full capacity in making the decisions he has made and having apathy toward my very real and deeply felt losses. I have fought hard for every part of his care and still tried to honor his wishes and yet had to fight for myself as well and it has been a very difficult mountain. I couldn't understand what God was doing...still don't.

My brother's old school buddies came over tonight to try to get Mickey to give a POA to someone, anyone and to discuss nursing home care. There is a nursing home a couple thousand feet from my front door and everyone would visit him there often. But, he has to agree to go and won't. Of course, I think he is so close to dying (within 2 months) that I just hate to force him out the door. But, what if I'm wrong about that? Oh man...life's a beach...ain't it?

Praying that what God wants, happens....
Mary Jo

 

[CindyM]

Well, you are right, Mary Jo that this is a temporary situation. Even if it goes on a couple of years, it is still not permanent. SOmetimes we can cope with anything if we jsut remember that it will not last forever...

 

[califsand]

Mary Jo,

It's great to see that you are getting the help that you need. I'm so sorry that you got to the point you did before that help came!

I have been the caregiver for my father who has ALS and the past few years have been brutally hard on me. I have a large family that helps in some ways but the bulk of Dad's care was on me because he felt most comfortable with me and also because I was the ONLY one willing to make sacrifices for him. I moved him to a Hospice house 4 months ago and that was a great thing for him. He is a lot less angry with me now (we had lots of arguements, daily ones) and I think that is in part due to him no longer feeling like a burden to me. Maybe this is an option to you where you live? Hospice care IS at no cost and they have houses that provide 24 hour care by licensed nurses...where my Dad is each patient has their own room and they let us decorate it however we wanted. We can also visit any time of day without calling ahead or checking in. It's an option, some people don't want to take it but I am so glad that we did.

My biggest obstacle now is to figure out how to take my life back. It wasn't mine for so long now that although I have the opportunity now to live my own life, I don't know how to. I'm depressed and there are days I can't get out of bed. I have been offered an excellent job but I keep postponing my start date because I'm scared to live my own life. Sad huh?

Hang in there and do what you think is right. Accept help from every source you can get it from and don't let his disease take your life from you, it is NOT worth the bitterness!

Sandy