ranting about this disease

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patgayle

Active member
Joined
Sep 20, 2012
Messages
60
Reason
Lost a loved one
Diagnosis
05/2012
Country
JAM
State
Westmoreland
City
Negril
how many times I have said to myself I can't do this anymore, I am going to go crazy! I am so tired of being accused of every little nasty thing my husband can think of. If I go out a different time of day to do errands I must have a new man in my life! If he dies soon I will be in trouble with the police! I am trying to kill him, he phoned his family to tell them how I beat him. etc etc etc I have never cheated on my husband in 28 years and I definitely don't abuse him, but it is what he believes. I can hardly walk away from him and he is calling me back to adjust this or that, complain about this or that. I don't need a dr to tell me he has FTD, I know it. We have had 13 night nurses quit in a year due to his bad behavior, but what can you do, it is what it is. It's the middle of the night and he is now yelling at me about the light being on - it's not. I have now started to sedate him so that he sleeps through most of the night and I don't have to look for yet another night nurse.

So, how many times have I said I can't do this anymore? Probably as many times as I have cried, more than I care to think of and I know that there are more times to come. This should probably be in 'rants and raves' but it is the middle of the night:)
 
I am so sorry that it has to be so difficult for you. God bless you for hanging in there, in spite of all that you have to take. Is your family supportive? You go ahead and rant & rave where ever you need to, I am here in the middle of the night, and I hear you. I will pray for you, a big cyber hug sent to you.

Paulette
 
I hear you loud and clear PatGayle!

I don't know how we do it, I just know that another day manages to come and go - doesn't matter how often I say I need to be asleep by 10pm, the night routine seems to get longer and slower and it's nearly always 11pm.

Keep yourself doing what you need to. You will get accused of things no matter what, so you should do what you need and let him rant.

I've been told so many similar things either explicitly or implicitly.

Recently when a palliative care nurse was discussing with us what I do if I find he has passed, he stated so she could just smother me with a pillow and they wouldn't even investigate?

Recently I went out to lunch with a girlfriend whilst his daughter was here and he said to her - why should she go out like this, she will be able to do whatever she wants soon enough when I'm dead.

Oh to anyone not dealing with FTD they may be able to make excuses for those 2 examples, for anyone dealing with it they just nod and know that there are another 100 similar examples.

Please do rant here. I prefer to vent somewhere like here and find I can stay so calm when he throws real tantrums or just throws off comments.

hugs
 
You all are the indisputable definition of love. In sickness and in health. You all are to be commended for your dedication and enduring faith. I am in awe of all the caregivers here. Thank you, thank you for all you do and endure. I am praying for all of you.

Lord, show me enough strength within me because I am very tired,
Show me patience to care for the one I love,

Show me peace of mind as I struggle through each day and night,

Show me the joy in the little things my loved one does to help me out,

Show me love when anger wants to take over my thoughts,

Show me hope when I can see no hope,

And Lord, show me kindness for those who care about me.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

A Prayer for the Caregiver


By Bruce McIntyre

Unknown and often unnoticed, you are a hero nonetheless.
For your love, sacrificial, is God at his best.
You walk by faith in the darkness of the great unknown,
And your courage, even in weakness, gives life to your beloved.

You hold shaking hands and provide the ultimate care:
Your presence, the knowing, that you are simply there.
You rise to face the giant of disease and despair,
It is your finest hour, though you may be unaware.

You are resilient, amazing, and beauty unexcelled,
You are the caregiver and you have done well!
 
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Thank you for sharing your thoughts. I thought I was the only one who feels totally worn out and in this horrible nightmare alone. I feel like I do everything wrong. The pillow is not right, the bed is not right. Too high - too low. I readjust and readjust to where it was in the beginning. I know he is miserable and I do understand. I am trying to help him and love him. I've even joked and refer to him as Goldilocks. After numerous attempts to satisfy him, I said honey what is bothering you. He pointed to me and mouthed YOU! Broke my heart. Cried and cried. What has happened to my wonderful husband? He has been replaced by this man who is bedridden, unable to speak and angry. I hate ALS!
 
I let myself cry and be upset after something like that incident your describe Santa joe, for about 15 minutes. Then I tell myself that it is the disease, it is not the man I know and love, and I am not going to allow the disease to eat at my soul, emotions and ability to love. Take a deep breath, and back into the fray ...

In a recent incident here where he screamed, punched and said I hate you, on talking about it 2 days later calmly, he said that MY behaviour (preventing him from doing something in this fit of rage that could have caused serious injury) was unforgivable. He has not apologised for saying he hates me.

Don't be afraid to rant, or to PM me, what any of you CALS are going through when any degree of FTD is involved is totally valid. I have found it is far better for me to rant hard to one of my support people. Then I return to my husband feeling like I can cope for another round, and never feeling like lashing back with nastiness. That is one of my biggest goals, NEVER to allow myself to lose control and lash back at him in spite and nastiness.

Vicki, love you girl!
 
Vickie you so understand. After I responded, I thought there I've said it out loud. Thank goodness for this support group. Only we CALS can truly understand the personal heartbreak of this disease. I pray that these are not the memories I am left with. I want to remember the first kiss, my wedding day the birth of our children. I don't want ALS to overshadow my precious memories of him. I am hell bent and determined they will NOT. ALS has stolen so much from us. Our dreams of the future is the major one. My husband and I are both 63 and had planned on a wonderful retirement. Should have done a lot more when we were younger but having children, all of that was put on the back burner for later. Now later - that will never be. I get angry at times but I refuse to become bitter. Bitterness eats away at your heart and I want my heart to remain full of love for my high school sweetheart and love of my life!
 
Oh honey... you are right, you don't need a doctor to tell you it's FTD. You DO need a doctor that will listen to YOU and prescribe appropriate medications. They won't bring back the man you knew.. but they can help make this one easier for you and the night nurses to cope with. You're doing the best you can.. that's all you can do. Hang in there and come rant any time you need to!
 
thank you all of your support. It really helps me to read threads like this to know that others are going thru the same things I am. Yesterday, my husband told me that I was the love of his life. 2 hours later, he was telling me that I was an evil spiteful woman, that no one in the world would put up with, especially when he told everyone my darkest secrets (whatever he thinks those might be). During that whole 2 hours, I was just sitting there wrapping Christmas presents. I know we should just let them rant, and still love them totally, but it becomes so hard to be attacked over and over again, and to know you are just going to go right back into the attack. I try my hardest not to be mean, but this time I swore that I was just going to leave him alone for a couple of days and not sit with him for hours. We do have nurses there, so he is safe, and I would help if there was any medical need. But I need to back away, breathe, hopefully find some peace before I sit with him and listen to his disappointments in me. Our neurologist has told us that pretty much, ativan is the best drug to keep him calm. Does anyone have anything that they think is
better!
 
@ mrvaughan - when my PALS gets like this he then often gives me the 'silent treatment'. I've made a 'when - then' statement to him and I stick to it.

'When' you are pointedly not talking to me, 'then' I will spend my relaxing time somewhere else and relax, not be pointedly ignored.

He hates me doing that, but I still do all he needs with every care and tenderness, I just take my cup of tea or whatever to another spot and I find I really do relax then.

Lots of little things you can work out, tell them, and then do them.

Of course I get accused of it being other things, but it's a sanity saver for me.
 
Another option I really don't bring up often enough... check with your neurologist and also your local ALSA chapter (and also your local Alzheimer's support chapter) and see if there is a dementia specific adult day care in your area. Glen actually loved the time he spent there and it was a life saver for me... I could meet a friend for coffee, run errands or sometimes even just take a nap! The one we attended had a sliding scale fee and even some financial aid/scholarships if needed.
 
thank you, that is a real good idea. I can say, When you are verbally abusive, I will spend the evening in the back room. I must tell you all, to read that you are all having the same experience makes me realize that I am not crazy. 13 years ago, we were told that ALS does not affect the mind, but they were VERY wrong.
 
Katie C. it is incredible to me that your husbands ALS was so fast. We have been dealing with this since my youngest was in 1st grade. She is now a junior in college. Yes we are blessed for him to be still around, but it has been a hard, hard road.
 
MrV, you need to understand that it took us (meaning my son and I) at least 3 years to get a diagnosis, and we can trace symptoms back before that. Also.. it was not progression of the ALS that actually caused his death, it was aspiration pneumonia after an incident brought on by the FTD.

Actually, that brings me to what I wanted to mention to anyone dealing with someone who has been diagnosed with FTD that is considering "if you do this, this will happen" as a way to mitigate some of the stress. Be careful because that could backfire. One of the symptoms of FTD is loss of "executive function"... or cause and effect. Such as if you eat the apple it will choke you. So yes, you can explain consequences but if your PALS has FTD there is a good chance they won't really get what you're talking about and it will only become another source of frustration.
 
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