This week marks the end of any extra help in caretaking
Riley. About a week ago I received a call from our Veterans Administration
social worker and was told that they were assigning me 12 hours a week from a
personal care aide. The very next day I received another call from the same
social worker that my 12 hours had been taken back because the VA has
discontinued the program that gives that benefit to any veteran who does not
have a service related disability. I will have no aide, no respite time, and
the visiting nurses paid for by Medicare are at their end of time. We have
physical therapy and occupational therapy for another week. Then I’m on my own.
Riley has improved under the direction of the PT and OT. He
can now get out of the bed and into his wheelchair. He can also get to the
shower and have a real chance to clean up. I should be happy for him. He can do those things but requires
my supervision. But, I just can’t seem to see past the fact that this demanding, obstinate, narcissistic, man will now be mobile. It strikes a bit of fear in my brain – like when a baby takes the first step. It’s delightful, but frightening. The baby will now be into EVERYTHING and trying to get to places that are not good for bambinos.
my supervision. But, I just can’t seem to see past the fact that this demanding, obstinate, narcissistic, man will now be mobile. It strikes a bit of fear in my brain – like when a baby takes the first step. It’s delightful, but frightening. The baby will now be into EVERYTHING and trying to get to places that are not good for bambinos.
I get comments like “Things will be so much easier for you
now!” I’m not sure how they come to that conclusion because I see this
improvement as MORE work for me. It’s not really work, it’s the constant
supervision that he will need. If I’m not looking he’s likely to try to cook
something and (not being able to reach the top of the stove) end up burning
himself. He loves candles and I’ve put them out of sight to prevent reminding
him of the flickering flames and pleasant aroma. He will surely be searching
for them and end up lighting one under the bedroom curtains setting the house
on fire. He’s been talking about how great it will be to be able to get out to
the woods. I’m very sure that if I’m not looking, he will head down the ramp
and onto the path to the woods. The only thing for me to do is to watch him
every second that he is mobile. Like I have nothing else to do.
It’s like the time the OT told me that it was my
responsibility to sit and chat with him
for at least two hours everyday. I have nothing I want to chat with this about.
She told me to make something up because it is what is good for him.
Good for him. Why is what’s good for him more important than
what is good for me? Why is it that him getting better more meaningful than my
getting worse? Why should I sacrifice myself to help him get better? Is his
life more important than mine?
I feel that I’m in a parallel race with Riley. He’s racing
to get better and survive before I die. I’m racing to try to save my own life
whether he gets better or not. Once he is capable of taking care of himself
(which I’ve been told is never going to happen), it won’t matter if I’m died
helping him get better. I can race to try to save my own life as much as I
want, but as long as I’m helping him get better, there’s too much stress and
too little time to do the things for myself that I need to do in order to live.
It is unfortunate that we were responsible adults in our
working years and make careers for ourselves ending up with the retirement pay
that we have. I guess Riley should not have given so much of his life to the
military and retired with a pension. Because of that, we make too much money
for things like Medicaid and most other programs. We are just over that proverbial
line that says we don’t need any help. However, the average nursing home costs
about $5k and we don’t bring home that much. Even if we did, there would be
nothing left for me to live on. So I will continue my research for a place for
him, a job for me so I can either put him in a home or hire an aide.
Right now it looks like Riley is winning the race. That’s
OK. Remember the tortoise and the hare? This parallel race is bound to cross
over on itself sooner or later.
Oh Linda, I can so relate to what you are going through. Though my husband is still able to work and get around, etc. I still maintain nearly all of the household chores, while still putting up with his anger and hostility. On top of that, mine still drinks on a daily basis. I have often wondered how unfair it is that my health is declining and he seems to suffer few consequences of his alcoholism. I make sure he has everything he needs from his meds, to a healthy diet, but the stress of keeping it up and keeping him from hurting himself, or burning the house down (we heat with a wood stove) is taking it's toll.
ReplyDeleteMy advice to you, is to take time and breathe for yourself. Even if its only a short walk, or standing out side. Scream if you feel the need, anything to let the anger and resentment settle enough to go on with your day. And always know that you are not alone in your journey. We are all with you in spirit and our prayers are always directed to find you peace. Sending Love!
I have a mother-in-law who has a personality disorder and suffers from depression whenever it benefits her. She is incapable of managing her money, has zero empathy for others, and cannot self-reflect or take responsibility for any of her actions. Not one person in her family of orgin speaks to her (seven brothers and sisters and countless nieces and nephews) and her two sons are at their wits end dealing with her neediness and demands for attention. She's like an annoying 5-year old in an annoying old woman's body. My husband feels sorry for her and, since no one else will take her, he feels it is his responsibility to care for her. She now lives with us. I, like you, Linda, feel like I'm being forced to sacrifice my well being to ensure this wretched woman is safe and at peace. Where is my respite? Why do I have to give and give of myself for the benefit of a person who is incapable of recognizing she is her own problem? I have decided I WILL NOT sacrifice another minute of my life trying to help the unhelpable. She will live and die the way she is, always playing the victim. We, the kind and compassionate ones, need to learn and accept that no matter how much we sacrifice of ourselves, these wretches will never be grateful, will inevitably demand more, and will always land on their feet after we have been sucked dry. Don't concern yourself with what happens to Riley; focus on what's best for Linda-the strong, independent, and compassionate angel that you are.
ReplyDeleteRiley may not have a "service-related disability" but over the course of this blog you have made it clear that his alcoholism was a direct result of what he suffered during the tenure of his service. (Am I correct in recalling that he was assigned to a submarine?) You need to work with a physician to diagnose his alcoholism as a "service related PTSD". This is apparently something that the VA does recognize and accept. Perhaps this would allow the VA to provide you with the assistance you need.
ReplyDeleteHi Linda, I agree with what anonymous 2 had to say perhaps working with a physician you could diagnose his alcoholism as service related PTSD, seems worth it to me. My grandfather turned to alcohol after he returned from ww2. It's complete BS the way the VA denies people help, this isn't the first time I've heard of it. I sincerly wish they would take better care of our veterans who serve our country doing all kinds of things I wouldn't want to do. My appreciation to Riley and your family for the sacrifices you have endured (sacrifices you are still enduring) that continue to be magnified by a program that doesn't do what it should. This is another broken system. You deserve so much better, and asking for some help isn't asking that much. It's not like you're asking for much. Everyone needs to be able to balance their life, and this just doesn't seem fair. These programs are full of loops and twists that are difficult to navigate, and someone who's busy caretaking can't do it alone. Please reach out to a physician and try that suggestion. Goodluck!
ReplyDeleteThank you everyone! We have an application in for PTSD and he has been diagnosed by a psychologist and primary care doctor. However, they are not VA docs but rather civilian docs so we aren't sure how much their diagnosis will count. It can take years for an application to be either rejected or approved. We also have an application in for "Aid and Attendance" which doesn't require him to have a service-connected disability. But that may take up to six months before we hear anything back. I am going forward with my life and will cross each bridge as I come to it. I've started fundraising campaigns to open a recovery center for people who are involved in the chaos -- not for alcoholics, but for the families and friends.
ReplyDeleteI can so relate. I can't leave home when my alcoholic husband is home, even for a fifteen minute visit to my sister in law's 2 miles away without coming back to find my kitchen looking like a crime scene! We live in a dry county where the moonshine flows like spring water. Your blog post regarding the whys of staying are spot on too. It's like being given a life sentence of punishment for a crime you did not commit. I shared your link for Front Porch, hope that helps. You are making a difference for a lot of people, and this one thanks you.
ReplyDeleteAs I read everyone's comments I think I should be counting my blessings. My husband a terrible alcoholic had sex with a heroin addict he met in rehab even in our home. then he started an affair with a girl at work. So I asked him to leave and told him he had crossed the line for me. He then went on a drinking binge that would make you shudder. Wild Irish Rose and sixty beers a day. He has harmed himself physically now and is fresh out of rehab and is determined to never drink again. Of course the girlfriend will take credit although she assisted in bringing him his drink for those two weeks. She gets credit because she yelled at him to go to rehab. While I called rehab every other day trying to get him a place and called his brother asking him to intervene and take him to get help. funny I lived with him for 21 years and he so quickly passes from me to someone else. I should be grateful that he may end up disabled because of the damage he did to himself that I do not have to care for him. All of this and I find it hard to except that our life is over. But I read what all of you are saying with a clear head and I sure am not going to feel sorry for myself that I can move on without him. I could be saddled for years I can see. I don't want that. He doesn't deserve that. I am wondering how people get to a place where they can treat others like these men have treated all of us. I am so sorry for all of us. the pain and the gaping hole in our hearts that seemingly will never heal. I just don't get it. I really don't get it.
ReplyDeletethanks ladies for allowing me to read your lives and the pitfalls and the pain. You are amazing people.
K
Hello - Because my ex-husband is, hopefully, dying of alcoholism but has enough energy to make all of our lives a living he##, I googled "when do they actually die" and your blog came up.
ReplyDeleteThe first entry that I can find was four years ago and I'm appalled that you're still dealing with this. My heart goes out to you and your entire family. If there was some weighty and helpful advice I could give, I would, but I've got nothing but utter empathy.
My second husband, an angel on earth, died after four years fighting ocular melanoma of all things. Super healthy, never drank, smoked, was an athlete, you name but he went down and I was his caregiver for four years. Then, my mother showed up and I was her caregiver for another four years. So, I do understand all of that.
What I do not understand is how these ghastly people continue on and on and on and make nothing but heartache wherever they go and never seem to just go away. I blessed him and let my alcoholic, abusive monster of a husband years ago but my son is living with the guilt/anger right now so I'm going back to my grief counselor to do whatever it takes to get him through this.
The real problem seems to be that the 'system' is not equipped to help any of us. No police officer (he threatened our lives but, "we have to witness it", or "mental health professional" who stated that he checked all the boxes (of course he did, he's a master manipulator), or any substance abuse person, hospital, will take him on. He's paranoid, bruising, drinking non-stop, terrorizing anybody he can and a menace to society but nobody will truly step up to the plate and be on our side. I can't even get a PPO because "people have abused that".
SO, seeing you still dealing with this is disappointing and my heart breaks for you. It truly does. I know that feeling of wondering when somebody's going to think my life is worth anything. I truly do.
About all I can do is offer my ear, heart and send our a hope and prayer that this ends as quickly as possible for all involved and that the healing portion of this nightmare can begin. You deserve to have happiness in your life and you will, in time, have it. As my late mother wisely said once, "True success is outliving the b#stards". I thought it was a rough thing to say but she's been proved right more often than not.
HUGE hugs to you and yours.