A failed caretaker...

[hearts_and_thoughts]

Hello all...

I am new to this site. In fact, I've been without a computer for several months now and this is the first place I found for the needs I have. By the posts that I have read, I think there are a lot of wise and caring individuals here.

My story of which I need some guidance: My brother who voluntarily walked away from his entire family (sisters, brother, dying mother, aunts, uncles, nephews, nieces, cousins) 15 years ago, showed up on my doorstep July 30, 2007. He had Bulbar Onset ALS and had symptoms for two years before arriving at my home. I am the baby of 8 kids. My parents and grandparents have passed on and one of my sisters died of Limb Onset ALS in 2000 for which my brother didn't know she had died, let alone of ALS. At this time, I had my house up for sale. I had recently lost a job, had no significant other and my children had their own lives going on. I decided I wanted to pursue a different life devoted to helping others. I was in the process of striving to meet those goals when my brother showed up. I had various people tell me to continue with my life and I couldn't do that because I thought that was selfish and I couldn't look myself in the mirror. After all, I wanted to devote my life to helping others...how could I not help my brother.

But, my brother has worn me down and I am experiencing a deep depression. I'm bitter and angry at my brother for all the fighting and stress he has given me...not from the disease but from him fighting me all the time about everything. He wore me down and I have no care left in me. He has treated me very crappy, has used me and lied to me. The disease itself is frustrating enough let alone his personality defects. Then, from afar, my family tries to tell me I need to do better...as they go on with their normal life and I have none except to live and breath for every moment of need my brother has which is nearly every moment of every day. I'm burned out and angry and bitter and I don't know how to turn it around. I, for the first time in years, even swore at God for allowing me to be in this. I am ashamed of myself for my bitter, angry, resentful self and I have lost all self esteem. Due to this very unattractive side showing up, I also lost my boyfriend and I'm pushing away my entire family because I just have become hateful. It's not me and I don't know what to do.

Is there anyone else who has experienced bitterness and resentment toward a PALS or am I just a sick monster for feeling this toward my brother?

[Icanmanz]

Hi hearts n thoughts. Just read your post, and it's a tough one. All I can do is pray for you guys. I wish I could come up with some ideas, but I am sorry I can't. Keep us posted though. God bless!

Irma

[DonnaJ]

Hi.....My name is Donna and I am new as well. I read all you had to say and my heart goes out to you. I have lived and am living all the emotions and feelings that you wrote about. You ARE NOT a monster. Everything you are feeling in normal. I have been caregiver for my husband for 8 years now. I have gone through hating him, loving him, broken for our marriage, lost my zest for life, spirit feeling broken, depression, you name it and I could go on and on and on, but I still get up everyday and do it again and ONLY by Gods help. They are all normal feelings and they make NO caregiver a bad person. We are human and we are suffering from the disease as well. It took me a while, and I still have to remind myself when he is being so controlling, and mean and everything having to be a certain way, its because thats all the control they have left in this world. I've read it and lived it.....its common in ALS patients. I find myself before I scream back or slam and bang around to look to the Lord in prayer and ask him to give me patience, to calm me, to wrap his arms around me and fill me with the knowledge I need to deal with him day in and day out. It works.......I am living proof........I've been doing it for 8 years now. It doesn't mean u let them rule.....you have to stand up to him and make him realize that YOUR all he has and that its time for Hospice to come help you so you can have some you time because its obviously not working like it is now. I know your brother or you don't want him to leave this world without peace. It's time for help. Hospice can releave you for a few hours a week. They have ministers for support and prayer, counselors that will come if not for him do it for you. They are there for you as well. I could go on and on about all the horrible times my husband and I have gone through and continue to go through but I would end up writing a book. I guess what I'm trying to say is look him straight in the eye when he is acting up and show him peace and love. And, make that call to Hospice YOU are worth it.

You have to let go of your anger toward your family. No matter how much they have let you down. I too have gone through that and still do at times, but you learn that it only eats at you and keeps you miserable. You were given this journey for a reason use it to make yourself wiser.

You stepped up to plate........that makes you a hell of a caregiver in my book.

Keeping you all in my prayers,
Donna - West Virginia

[hearts_and_thoughts]

Irma:

Thank you for your prayers. I believe in them and we definitely need them around here. Since I became a new person in the covenant of our Lord Jesus our savior 5 years ago, even in darker moments I always held strong to my faith. However, now for the first time, I have moments of such anger that I even direct it at God. I fear the Lord and would not do that but I have become a totally different person in this.

My brother doesn't believe in God and seems to relish it when I am broken. God must have trust in me to have me in this situation, but I don't understand how that is because I fail too often through my anger, frustration, depression and hatred to help to represent God's Good News. My brother fears death and seems to have much to be repentant about and I thought this could be a reason why the Lord allowed me in this situation. But, instead of getting through to my brother about the Lord, I am falling completely apart and away from God. I try desperately to get back and then my fuse is so short that any mean, rude, angry outburst from my brother or even just his too demanding self and I get angry, curt and mean right back.

I am usually full of patience and understanding, faith, hope and love. But, I have lost all of that. So, please continue praying that my brother repents and that I can be light instead of the darkness I feel I have become.

God Bless you all!
Mary Jo

[hearts_and_thoughts]

Donna:

Your response to my thread...(which is a good name since I'm hanging by a thread) was exactly what I needed so desperately to know and hear. It gives me that strength to move forward with a little more peace than yesterday. God has used you to give me that knowledge I needed to hear from someone who can truly relate to me that I am not a monster and terrible, horrible human being I have felt that I am turning into.

Please know that you gave me that proverbial hand of strength given to someone falling over a cliff. I hated myself for what I was turning into and yet I couldn't save myself...I needed that hand...and you gave it to me.

May God Bless you and may you have peace and love throughout your days!

PS: I know I am on a roller coaster, but now I can look at this and have courage to start up that next hill!!!

Peace to you,
Mary Jo

[Mary Helen Barr]

I can totally relate to the expression of anger to God. I am ashamed of the things I would shout out in the car while alone, or think to myself when not alone. I totally took care of my father for a couple of years. He had ALS for over 7 years. The really strange thing, is that I work in a church. My husband is the youth pastor at a Baptist church, and I am the choir director/organist/pianist at a Lutheran church. Who would ever expect someone like me to say and think such hateful things? I guess noone is perfect, and we shouldn't beat ourselves up for the thoughts we have.

[hearts_and_thoughts]

Mary: I wish I just thought it and didn't say it at times...but I spoke it. Was your father ever on a ventilator? 7 years seems like a long time to live with ALS.

Donna: Same with your husband...8 years seems like a long time. Is your husband on a ventilator?

Mary Jo

[CindyM]

we shouldn't beat ourselves up for the thoughts we have.

How true! Beating up on ourselves only makes a tough situation worse! Thanks for reminding us Mary Helen.

Mary Jo- regarding your brother; when a PAL is experiencing dementia and becomes difficult to deal with, we often remind ourselves that it is not the person, it is the disease that is making him or her act this way. I suppose the same goes for a person with a difficult personality who happens to have ALS. I hope you can find a way to take care of him part of the time while also finding relief from his behavior. Clearly, you should not be subjected to his behavior fulltime! Cindy

[Mary Helen Barr]

I spoke it, too! I shouted it! (not to my dad, but to God.)

My father's ALS started out in his left hand. He seemed to have a very slow progression. I think 7 years is considered to be a long time for ALS. I have heard/read that bulbar symptoms move a lot faster. He didn't seem to have any bulbar symptoms until summer of '07. Once the symptoms started, this progression really sped up. He also had a hideous bedsore that couldn't heal, because he had to be on it. He was not on a ventilator. I think if he had lasted a little longer, it might have been suggested. He had an appointment with the neurologist scheduled for a week and a half after his death. Really, by the time he started having shallow breathing, he only lasted about a month.

Is your brother on a ventilator?

[Gina]

Mary jo,I read your post last night and i just couldnt answer right away it just broke my heart.I am so sorry that your life at this time is just in such upheavel and torment.My husband passed on Jan 16 of this same terrible monstoruos disease.I believe that thier are life lessons to be learned in spite of the grief,pain,frustration and anger we all deal with while caretaking.I feel confident when i say one of them is not to let ourselves be abused no matter how desperate the situation our loved ones are in.To let yourself be abused will not help him nor will it help you!!!!!Sounds to me like your brother is and was always a very angry person now being exsterbated by this cruel disease.The fact that you say you have lost all self esteem would be an indication that his abuse is taking its toll on you.!!Sounds also to me like your familly is only reinforcing the notion that you also need to suck it up and do what you have to do to care for him . I understand your need to help those in need especially your brother however you cannot help someone who will not help themselves.Please people i know how horrible this disease is first hand and i thank God that my husband got over the angry stage and came to a place of acceptance where upon he appreciated my efforts however abuse is abuse and i would not encourage anyone to take it no matter what the circumstances.Mary jo please surround yourself with people who will support you and love you and understand your situation without adding to your allready stressfull situation.Please look for help wherever you can find it.You are not a monstor by any stretch of the imagination!We are all here to support you whatever decision you make and praying that god will guide you in the right direction .I am also praying that your brother will learn his life lesson as well which probably involves directing his anger at the disease instead of the only one he has in this world right now to step up to the plate....god bless you....Gina

[hearts_and_thoughts]

Cindy: Thank you Cindy for your words of encouragement. Unfortunately, it took me falling into depression and deep anger for my brother to allow Hospice. He is a veteran and this ALS is considered 100% service connected. So, he is in complete charge of his care and what help we receive.

Hospice began helping 2 weeks ago and we also have a home health aide 15 hours a week. They are a tremendous resource for assistance. My son and his girlfriend are in the process of moving in to help.

I just began counselling Tuesday and I believe things are on track to make me a part time caretaker for my brother rather than the full time, so things should improve. Unfortunately, depression has given me an extreme obstacle to overcome.

I am so happy I found this support group. It's what I needed to help me move along in a positive direction. Thank you all so much for being here~~~~!!!!

God Bless you all!!

Mary Jo

[hearts_and_thoughts]

Mary Helen:

No, my brother is not on a ventilator but he has oxygen bled into the bipap machine and panics if he is off of the bipap or oxygen for longer than one minute.

In July, my brother came to us with the ability to move and use all limbs although he did struggle. His breathing was difficult and he often choked. He finally got a bipap in September. During that month he began to lose his left arm and now it is completely limp. He is losing his right arm quickly now. He is deteriorating at a fast rate of speed. Up until a week ago, he could hold a paper cup and drink it. He has a feeding tube but still insists on being fed table food. That is understandable as it pertains to his quality of life. He cannot hold his head up. He has lost a great deal of weight and refuses to take nutrition through the tube many days. He no longer can be understood when he talks either.

I am sorry that you had to go through what you did with your father. My father died when I was 4 and we believe he also may have had ALS. In 1968 we don't think our rural hospital had much knowledge of it. They listed his death as having muscular dystrophy as a secondary significant cause. Heart disease was primary cause.

Bed sores are such an issue. I helped to take care of a quad for awhile in 2006 and he developed them. Somebody will be very rich if they develop a better way to avoid bed sores than the current way. Thus far, I am lucky that my brother is able to readjust his weight on his own to avoid the sores.

Thank you for your support,

Mary Jo

[hearts_and_thoughts]

Gina: Thank you for telling me not to accept abuse from my angry brother. You are right that it does harm to both of us if I accept it. You are also right that the family was wrong in expecting me to suck it up because my brother is dying. I have been deteriorating with exhaustion...both emotional and physical...and this has depleted my energy that is needed to care well for my brother...who unlike Zot's brother, is pretty much a perfect stranger to me. Now we are thrown together under these difficult circumstances.

I am sorry about the hardship you had with your husband before and after his death. I am glad to hear he appreciated you and had peace. My sis died of this horrible disease also and she had peace also. She had a wonderful husband who was her caretaker and appreciated all of her moments with family and friends. I'll never forget how she smiled really big the day we all went up into the mountains near San Diego in a convertible. She loved convertibles. She loved the mountains and that drive. I miss her.

But truly Gina, your sincere heartfelt advice touched me deeply and gave me some more courage. Each one of the replies I get strengthens me and I appreciate you all. I am so blessed to have found this site. Many blessings are sent your way.

Sincerely,
Mary Jo

[Gina]

Mary Jo, so funny that you would mention how your sister loved convertables.My husband owned a 68 Oldsmobile convertable which he loved to work on and restored last winter to almost mint condition.In the summer he was still able to drive it and by mentioning your sister i recalled a night coming home from the country after a Bday party for one of his friends.The top was down and it was a clear night and you could see all the stars and it was a beautifull ride home with the wind in your hair and the power of the motor and how much he enjoyed that ....thanks you have just remined me of a memory very dear to me ...God bless ..Gina

[hearts_and_thoughts]

Update on my situation:

My sister visited from out of state for a few days. I threw her into the roll I was in. She told me she learned alot and was very exhausted from the care that was needed. She talked to the rest of the famil. My oldest sister called me to give me support.

I know there have been alot of people praying for peace and relief in our situation. The power of prayer is remarkable. Thanks to all who said anything at all to God on our behalf.

Family members have also confronted my brother regarding his behaviors. What began as silent anger stewing from both my brother and I at the beginning of this week has dissipated.

I feel some confidence returning and today I feel there really truly may be light at the end of the tunnel. A twinge of guilt jumps in as I write that sentence because I feel like that light may come when my brother passes on. But, then, if he would accept Jesus as his savior, he too, can have that light at the end of the tunnel. So, I guess my guilt is uncalled for!

God Bless you all,
Mary Jo

[DonnaJ]

Hi,

No he is not and has never been on any type of machine. He is a stubborn man who has fought this through physical therapy, vitamins, noni juice, and rilutek, zanaflex, baclofen, quinine and up until a year ago he used creatine powder but it wasnt doing anything. Our family and church friends continue to pray, that is the most powerful medicine he has. He refuses anything of that nature bi-pap, feeding tube, vent, anything. He is a DNR. He only takes aleve for pain.

Donna - WV

[hearts_and_thoughts]

Wow...that is amazing to me. Both my father and my sister passed on around 3 years after becoming symptomatic of ALS. My brother is deteriorating quickly and I hate to say it but I don't think he will be much different from them.

That is great that all those things are working for your husband. That is a long time to fight this disease. Prayers truly are powerful.

I admire you and your husband for sustaining such resilience and courage.

Mary Jo

[hearts_and_thoughts]

My fuse is very short this AM. I've been up since 0330 to assist my brother and I had a very rough 48 hours. I hate to be lied to and for the 3rd time in 24 hours, my brother lied to me and I just went into a tirade. I know it sounds horrible to all of you loving PALS and CALS, but each day seems to bring about more and more reasons why I have nicknamed my brother SIR DIVA. You just wouldn't believe how he expects others to put out for him and how he manipulates. He states he wants respect from me and yet each day I have to ask him if I'm supposed to respect him for THAT? Remember, he is a perfect stranger to me...we are blood, but that is all. He left home when I was 10 and I maybe have spent a week of my life in the last 34 years with him. Our relationship is purely only existing because he was forced by this disease and he had no one else to turn to. He never came to my mother's funeral and he didn't even know my sis had died in 2000 of ALS.

I hate that my fuse is short, my blood pressure is high for the first time in my 44 years of life and that I feel so broken by all of the disagreements that take place. He has no compassion for others and this is why I nicknamed him Sir Diva...example: newspaper not delivered Sunday during a zero visibility blizzard and he demanded I call and demand they deliver it. I refused and he threw a tantrum. I went into a tirade of how I wasn't going to have somebody risk their life and limb for your damn paper. When I asked the question: Don't you care that they might get into an accident? He said no. I then went off about how they may have children or whatever and you just don't care. I just don't respect him because this is the exact type of behaviors I have been experiencing since he came into my life in July of this year. Now this is an accomplished man...22 year veteran, special forces, has a history degree from OSU and won a summer scholarship to Oxford in England, a pilot, a truck driver and a law degree. I know people who are complete drunks and have nothing that I have more respect for. Why? Because they care for others and have compassion. I just don't see any sincere concern and hardly any insincere concern for others whatsoever. I see a calculative, conniving and very selfish human being with ALS.

It makes me feel so cold to feel this way toward my brother. I don't hold grudges at all and yet, just as soon as I try to forgive for something, something else gets thrown in the pile. God commands that we forgive others so we may be forgiven also. I need God to give me that ability. So please say a prayer to give me patience, understanding and the ability to forgive with compassion so I may be a conduit of peace. thank you!!!!

[ZenArcher]

Screw compassion, respect is a two way street. I am at a stage where if you saw me on the street you wouldn't know anything is wrong. My hands and arms are weak but functional. I need help with little things like opening those damn bags inside the cereal boxes or Ziplock bags in general and jars etc. If I get something I can't do I take to my wife or one of the girls, not call them to me, and say thank you when they're done. That is just common courtesy. In my eyes terminal diagnosis or not if you want respect and courtesy it must first be given.

As you said in your earlier posts he walked away years ago. You've taken him in as a kindness not an obligation. If he is unable to show you the respect and appreciation you deserve for that gesture I would simply explain that he is more than welcome to get by on his own somewhere else or in an assisted living facility.

I don't care if he has ALS or not if he is unable to show you the respect you deserve in your own home (forgive the language) kick his ass to the curb!

[CindyM]

I agree, Jeff. I've said it before: just because I am sick it does not give me the right to be a jerk! Time to detach. It is possible to detach with love and compassion, and I do not believe that God or any higher power wants us to become victims of our own compassion. JMO.

[nspoc]

Hi Hearts and Thoughts -

This is a really bad situation. I care for a wonderful PALS - my best friend. I, like you, did not HAVE to do this. It is hard enough to live this life 24 hours a day even though she is a true hero. I cannot imagine your bearing up under this much longer.

Please heed my advice - I am a psychologist. It is time to end this situation. You are also at risk for contracting this familial ALS, the stress could be a killer in your life.

Send your brother to a facility. You can still be there for him if you want to be. There is nothing you can do to make him a diferent person. This situation will only get worse.

I am terribly concerned for your health - please end this very destructive relationship as soon as you can. Beth

[Shatzie]

I agree with Jeff and Cindi. Enough is enough. I know what it is like being told by family members how I should act because I am a Christian toward a vicious, verbally abusive grandfather, who had been physically abusive to his children (my dad included). There was never any tough love and their attitude enabled him to continue his cruel behavior. He never changed and never apologized to anyone. I finally made up my mind in my 30's to remove myself from any situation that included him, and my mom continously begged me to visit him when he was nearing the end of his life, which I only did once in the last few months. She kept telling me I needed to forgive and forget, but I had forgiven, I just refused to subject myself (and my children) to that abuse any longer. No one had ever defended me or protected me from him. My parents thought that it was the Christian thing to be kind to an evil person and try to win his heart over to Christ. But what they did was subject their children to verbal abuse and watching others being verbally abused. I had to protect myself and my children.

I am not yet in the position that your brother is in, but as someone who will most likely be there someday, I hope any friend or family member will remove himself from the situation if I ever became abusive or cruel.

[hearts_and_thoughts]

Well, you all are on the same page. I am also. Things are improving soon with regards to me taking back my life. We are interviewing caregivers for my brother now. We are awaiting approval for some home health aide service and I hope to be working before the end of this month. I've been told that in order to get my brother out, I have to evict him and I am currently under his thumb financially. But, I've been offered assistance by family members if needed. I just am not ready to go the eviction route. We have good days and bad.

One thing I haven't learned enough is to not let my brother's obstinance and selfishness control my moods. I think when I get an outside job and there are others consistently taking care of my brother, I will become more emotionally stable. Venting on this forum was very helpful. It takes alot of the guilt away to know that PALS don't even think I should take it.

[DonnaJ]

He is angry, bitter, mad at the world, he wants to make someone hurt like he is hurting right now. Not even showing up for his own Mother's funeral makes me think there may be some other issues he has as well. Doesn't excuse it, but I can almost bet this is why he is acting out. You should know that stress is not good for ALS. It only causes the disease to get worse faster. And, this is most certainly not good for you. If I am understanding what I've been reading is that this runs in your family which puts you at a high risk. You need to take care of yourself and find other means for your brothers living arrangements. He will keep you jumping as long as you jump. Believe me, I know.

My prayers are with you,
Donna - WV

[sharonca]

You say your brother is a Veteran? I am of the same opinion as others. Take him to the VA hospital and let them deal with him. I can't imagine that they wouldn't take him. Especially if he was in their emergency room. You do not have to take that kind of abuse. The VA has social workers who will also help find him a place to live. I've dealt with the local hospital for the last five years for my father-in-law with dementia and they were great. Visiting days were very pleasant and I could walk away when I was finished.

God loves you.

Sharonca

[Michael S]

I am new to caregiving. My wife of 32 years was diagnosed with ALS last Sepember. My emotions have been on the ragged edge ever since. I know that the worst part is still ahead. But I have already had some very frightening thoughts. You are not a bad person for the thoughts and emotions you are experiencing. Rather, we ALL are the brightest of angels who have simply been given the greatest of all challenges, that of being a caregiver. God rewards us in ways that sometimes baffel us. I pray that you don't abandon Him, but rather ask for His help. Please, always make time each day to call on Him. He will never let us down.

Michael S

[Carolan]

Mary Jo,

I am sorry for everything that you are going through. It sounds like you are making progress toward improving your situation and your relationship with your brother. I agree with what others have said and with the advice that you should look into a facility for your brother.

You seem to be struggling with a conflict between your desire to convert your brother to Christianity and your personal needs (which are very legitimate). He seems to be taking advantage of your wish to help him spiritually, and he will most likely continue to exploit this. You have shown him love far beyond what he has offered in exchange, and this is more than enough. He has free will, and ultimately he is the one who must decide how he wants to live and die. He might come to Christianity at some point, but you cannot blame yourself if he doesn't. You have done your part, and he has to contribute something to his own spiritual development as well.

So...please be kind to yourself and don't focus on the negative feelings that are a natural part of caring for a difficult family member. Allow yourself to have these feelings--don't feel like it's a shortcoming on your part--and then keep going as best as you can. Recognize when you are having a negative feeling, and remind yourself that it is OK. No one is perfect, and God does not expect you to be happy and patient every moment of your life. It's just what we strive for. You have done far more than most people would, and I hope that you will give yourself props for that.

I am glad that you are seeing a counselor. This will help you to work through your conflicted feelings and, I hope, take back control of your life. A caregiver will also help, but a facility for your brother would be even better (and possibly cheaper).

If you are not ready for this option, you might try establishing some ground rules for him to stay in your home. There is a really good website at http://www.loveandlogic.com that offers some strategies on how to handle situations like this. Love and Logic is actually a system for raising children, but it works with adults as well. You might say something like, "I care for you too much to end our relationship, but this situation is not working. If you are going to continue to live here, then I need for you to make these changes. [And then list specific things that you want him to improve on.] Otherwise, we will need to look into a facility for you." Then when he acts out, like the newspaper incident, you could remind him of your discussion. You are giving him a choice--he can live with you *if* he is respectful of you and others, or he can choose to live elsewhere if he cannot honor your needs. This takes the pressure off of you. It becomes his choice, but you will also be protecting yourself from his emotional abuse.

But the bottom line is that you should acknowledge the very generous things that you have done for him, and don't feel like you are falling short when he has taken advantage of you. I know that you are also concerned about his spirituality, but you really have done your part. As I said, he has free will, and you are not a failure if he chooses to reject the love that you have shown him.

[Lorie]

Tim say's a Big Hello to WV. He misses it soooooo much. I can't send you a message on your AOL messenger. I don't have AOL. When you can Private Message on the Forum. Send me one. Tim wanted me to ask you a question.


Lorie:-D

[DonnaJ]

I sure will, but I think I have to have 50 posts before I can PM. At least thats what I think I read in the rules. You don't have to have AOL account to send an email. I believe I noted my email address on my register.

Hope all is doing well and Happy Valentine's Day!!

Donna - WV

[DonnaJ]

I sure will, but I think I have to have 50 posts before I can PM. At least thats what I think I read in the rules. You don't have to have AOL account to send an email. I believe I noted my email address on my register.

Hope all is doing well and Happy Valentine's Day!!

Donna - WV

LOL!!!!! I'm all over the place on here! I can't figure out how to get to private message and how to send one to you. I'll get there eventually I suppose. Takes awhile for this computer stuff to latch on to my brain.

Donna :confused:

[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]

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]

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 dx 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]

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]

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]

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

[hearts_and_thoughts]

Sandy,

I can't believe how strong you and so many others are that you dealt with caregiving full time for years and years. I've only had the badge since end of July 2007 and I'm a mess. Wow. I can't even fathom where I would be in years to come if I did that. You have my complete admiration and awe.

Is that job something you really want? Maybe there is more to it than just not wanting to take control of your own life.

I am so sorry that you are depressed. If you weren't halfway across the country, I'd meet you for coffee or something!! Santa Barbara sounds nice...right now, I'm in the middle of a snow storm... and just like the energizer bunny...it just keeps snowing and snowing and snowing!!! It is pretty though!!

Thank you for your support!!
Mary Jo

[LisaM]

Why are you killing yourself over this? He is your brother, even given the circumstances, and he is a person in need to you and in society, but that doesn't make you the sacrificial lamb here! Even if you happen to be getting paid for your efforts. First of all, one person to take care of all the needs of an ALS patient is nowhere near enough. Second, you have children and your brother has other siblings who, even if they don't have any interest in helping your brother, need to support your decision to help your brother. Walking into a house day in and day out with an ALS person is freakin' hard enough, but to not have any support? That's cruel. And on top of it to deal with ridiculous circumstances with your brother and have your kids and siblings say the things they are with no intention of understanding? Forget that.

I am a co-primary caregiver for my father whose limb onset began about 2 years ago. I have one other person who lives with us and has just as much if not more work than I do. Plus, I have 2 siblings who don't live here and a couple of cousins who also help. The people who don't walk into this house daily don't fully understand the demands but they have no choice but to help. And it's still not enough. No where near! I am relatively young and have so much life to lead but I have virtually no social life and encounter the same feelings that you do...I never want to travel or do any of the things I used too. I go through huge rage regularly and I don't have nearly as good of a reason as you do to want to shut the door.

I am so, so sick right now with a pneumonia type flu but does that mean I can tell my dad that I can't feed him today or go to the bathroom? No way. But who is taking care of me? Yet I have to take care of him and deal with his demands - he is constantly uncomfortable in his body and needs something every second we are around. He has no ability to give us anything yet takes at the highest degree. It's a bad equation for any relationship.

I am always plagued with where to draw the boundaries, but, you know what, there are no boundaries that can be drawn. If they call you at 1, 3, and 5 am to turn them or shift a pillow or pull their legs up - what can I say? Sorry, shop is closed after 11pm? It doesn't work. So where is the middle ground for someone like me or someone like you? You can only demand support from every person you know and TAKE CARE OF YOURSELF. Whatever that might mean to you.

You have a couple options. First to see a therapist to sort out your feelings. Your feelings of guilt and obligation are extreme for someone you don't know and must stem from somewhere. I think whatever you are going to feel, it has to come from a truthful place. Second, to get EVERY single family member involved. You need to be the care manager so to speak and delegate everything out. Doctor's appointments, medication refills, costs, meal prep, and time for relief. Go away for a weekend every few weeks and leave someone else there to deal with stuff. You have too - it's not an option, otherwise you will get sick and you will look back on the time you spent and regret that you didn't utilize options. Third, talk to some people about nursing home care. For a person you truly care about, they say it's the worst thing that could happen...but you can't do it all and DO NOT NEED TOO.

I had to put in my .02 here too. Good luck.

[CindyM]

Hey Lisa- I was backed up on reading the posts so I know this is an older conversation but I just had to respond. You idea of being the "care manager" is one of the smartest tips I've read yet! thanks for sharing.

[hearts_and_thoughts]

Lisa,

Thanks for your input. I have finally been getting some relief with my brother because the VA has finally paid his full amount (almost anyways) and he can afford to pay others to come in. I finally get to sleep and for the much of the day, I have some time to myself.

It makes me wonder though about the needs of all of the ALS caregivers. Due to my brother "being in charge" of himself, I have not approached the ALS clinic. So I am wondering if they help a caretaker if the patient doesn't want help. Does anyone know what type of help the ALS clinics provide for the caregivers?

Within 8 weeks, there will be some major changes in our living arrangements. Either I will be selling my house and we all have to move, or my brother will lease this place and I move elsewhere (which was my plan anyways prior to my brother showing up...(moving)) or my brother is moving elsewhere. I look forward to that day!! In the meantime, my brother has pneumonia and who knows what will happen.


Mary Jo

[hearts_and_thoughts]

Lisa,

Some of my "out of state" siblings came to visit and got all the paperwork such as will, POA's, DNR order, Living Will, and got my money back from my brother. They put a contract together that spelled out that I was not "the sacrificial lamb"!! It was a whirlwind week but it relieved me of so much. There are no more arguments between my brother and I due to my sis close by who is business POA and takes care of paying bills and grocery shopping and is my fill in when I go back to work, if someone doesn't show up as scheduled. Although I haven't sold my house yet, and Mickey is still here, I barely have to be his caretaker anymore. I'm a patient person and know that things take time to change so, I will see what happens with regards to living arrangements. Things are going in a positive direction, so I won't complain at all!!!

What a difference...I have a clearer head. I have been to counselling only 2 x because I forgot my one appointment and didn't reschedule for a couple weeks. She was very happy to see the positive changes in me.

I no longer feel any guilt and in fact feel real good that I did the best I could. And I believe there was a reason I went through this and hope that I follow through with some advocating that I plan on doing.

I hope that you are doing ok. I really do look at all of you on here as heroes.

God Bless,
Mary Jo

[DonnaJ]

I'm so happy and relieved for you Mary Jo. God Bless you!

Donna-WV