Keith speaks about his many acts of Caregiving

Keith talks about his older son

My older son has dyslexia and learning disabilities along with a stutter. We've been dealing with Special Education for him for years but what breaks my heart is hearing the other kids teasing him about his stutter.
My anger is pretty much gone about his addictions because I believe it is probably a complicated picture of what got him to where he is today.  It may not be his fault but it is up to him to fix it and make it better. That I'm certain of.
He has been in and out of drug rehabilitation centers and now he's home with us.  In order to get privileges from us he has to agree to certain rules like seeing a psychologist every week and going to an AA meeting every night. An example of the privileges he earns would be that he gets a pack of cigarettes for going to the meetings. This mostly works because we are giving him something he really wants.
My wife is different. She feels it is up to her to make them better. She's a nurse and that's how she approaches things.

Keith talks about almost losing his son during an overdose

Both of our sons have been involved in IV heroin use and three months ago my older son watched his younger brother almost die. In fact he was legally dead for awhile. My older son witnessed the whole thing. My wife is a nurse and when she came running up she did CPR on our younger son until the medics got his pulse back. He had turned blue already.

Thinking about the big picture, we lied and told the hospital that he had wanted to kill himself because we knew they would keep him in treatment for a longer period of time. When he woke up he denied it and said he had just gotten some bad stuff. We said what we did about his behavior because we feel like we are buying time whenever we can. Even six weeks of treatment is better than having him back out on the streets. He does great in the rehabilitation programs but that only lasts for the time he is there. Once he gets home our goal is to  keep them both alive for as long as we can. Our hope is that they'll realize how stupid this all is . Maybe they'll change as the friends who got them involved in this lifestyle either die off or get straight.

According to what my beliefs are, this goes against everything I think about human nature. When it's your sons then the picture changes and you do crazy things to keep them alive long enough to have a chance at change.

I really can't believe that I've gone against all my principles about independence and finding your own way. I still have the same beliefs but right now I have both of them working for me so I can both keep and eye on them and have some control over their money and how they spend it.

When I was even younger than both of them I had my own apartment and was making my own decisions. When I look back over my life that's how it was for all of us back then. Lots of people I knew were alcoholics and now they are dead but some reformed and made something of themselves. No one really interfered or saved anyone else. We each made our way.

Because of certain situations you have to go against your beliefs and somehow live with it. Putting someone in a nursing home comes to mind as an example. I suppose that's the hardest thing to do for any Caregiver.

Another piece of the big picture for us is that there are two Caregivers, my wife and I. She deals with all this everyday while I'm at work. She's ended up being hyper-vigilant 24/7. I get calls from her that she worries that they are getting high and wants to go get them to come home.  She has tracers and checks their phones and who they are talking to. Sometimes we take their phones away. Then there are the cars and all the issues of letting them drive and using this as another privilege to bargain with. There is no end to her involvement.

We can never leave the house unguarded. As a result we almost never leave the house or go away on vacation. My step daughter and son-in-law are right down the block so they come to play look out if we even want to go out for a quick dinner.

The way I keep my sanity is that I ultimately believe it is up to them to recover. Especially after my younger son over-dosed it hit me that I can't really do much and if he dies I'll just have to live with it. I still love them but my wife thinks that this is something she can do for them. She thinks she can make them better.

Keith talks about his relationship with his wife as they care for their two son who are addicted to drugs

It's hard to believe what we have given up for our sons but our lives basically revolve around them. Each of us has something that we are involved with in the community, I have Rotary and she's involved with the Business Improvement District downtown and that is our only release from our situation. It helps to have other things to talk about and I don't mind hearing about all the political wrangling that she is involved in for the town. Better that than more bad news about our sons or waiting for the police to call when they go out at night.

Our younger son did just start a computer course at the local community college. For him, that's a really frightening prospect. My wife went with him to make sure he would be comfortable. He actually sat through the entire 4 hour class and came out smiling. He's not an easy kid to like and doesn't show that kind of emotion easily. He has Asperger's and that smile showed a real triumph in him. That's all we need to keep our hope alive.

I might have thrown our kids out of the house long ago but that isn't how my wife wants to handle it. She wants to give them as many chances as they need to figure things out.  No matter what I think about the benefits of their hitting rock bottom as a type of wake up call to sink or swim I want to support her and our marriage.

I also understand that their behaviors may not totally be their faults and wonder about how much of our support they truly need. We also worry that our son is being manipulated by his drug dealers. They had him driving to the Bronx to pick up the drugs. It's so hard to know how much independence to give him to let him grow into a man when he actually may need our protection. It's a very tough call.

As much as I daydream about getting on a train to just about anywhere, I have come to realize that vacations aren't what's important and neither is owning a Lexus. Time is very important to me. I marvel at the few free moments I have and appreciate an occasional break but I don't think I would ever give up on my Caregiving and all the lives I'm involved in.

Keith talks about the aide who cared for both moms

We had a lovely woman who cared for both my wife's and my moms. She had had cancer years ago and now found out that she had cancer again and only had another 6 months to live.

She came from nothing and had no financial resources so we helped her with finding services and paying her rent because she had done so much for my family. My daughter and wife take her to her medical appointments and help when they can. This is several years later and she's still alive. I just talked to her the other day and she's in good spirits.

Because she was afraid to die something amazing happened to her. She showed me her shoulder and there is a white discoloration similar to a birth mark that is in the shape of a cross. Because she is a devote Catholic this has really comforted her and now she's no longer afraid to die.

Keith talks about the big picture for his mother

My mother has Alzheimer's, but it's the happy version of the disease.
She smiles when she sees us, but probably has no idea who we are anymore. The big picture that filters all my decisions for her is my goal of trying to make her last years as comfortable as possible. We have aides around the clock, and since we have such a big extended family most of the aides are family members. It makes the situation much easier to deal with and they are very caring.

She had briefly gone to a nursing home for rehabilitation after a fall and,  even though I thought it would be traumatic she adjusted very well. Whether we are right or not, we felt that she would be more comfortable in her own house. The cost is just about the same to have someone sit with her and take her to the bathroom every few hours.

Keith talks about how being able to see the many aspects of the situation with his mother-in-law helped with decisions he had to make for his mother

Before I needed to make a decision about keeping my own mother at home I had watched my wife care for her mother. She had originally promised her mother that she would never place her in a nursing home. The problem was that she didn't have any money and none of the siblings could give up their jobs to care for her. So in the end my wife had to place her in a nursing home.

She quickly deteriorated from being ambulatory at the beginning to being comatose right before she died. There were some bad experiences that we had with the nursing home and that was another reason I felt that I wanted to keep my mom in her own home. I also realized that as soon as you are no longer verbal you get treated very differently in a nursing home setting. This whole experience showed me the big picture of what I was dealing with and made my decision to keep my mother in her own home clearer.

Marian talks about her husband and father's dementia

Marian talks about the changing roles with her husband’s dementia

In some ways as my husband began to show signs of dementia I turned into the father of the family and he turned into the child. After he died I had to find out who I was. I didn't really know who I was. I was no longer the mother or the father or the wife. I also had to live with my mistakes. I didn't have him or anyone else to shift the blame to anymore.

Marian talks about her father’s doctors

During the time my father was at the mental hospital with his advanced dementia he had about ten rounds of pneumonia and they treated him with penicillin. He would make a quick recovery each time but then he would get it again. I simply asked whether this was the right approach for him. The doctor really ripped into me and accused me of wanting to kill my dad. That was devastating. This was long before hospice was available. I wasn't trying to kill my father but this was a pretty awful time, even for making inquiries or finding out my choices.

Our Caregivers and their stories

Use the contact form at Caregiver Access Access to tell your Family or Informal Caregiver story and have it included in our new blog When the Voiceless Sing. In the meanwhile here are some stories to get you started. When other Caregivers read your story they will feel less alone and overwhelmed. The connections you make with your stories are priceless. Remember we want to know about YOU! Not so much about the person you are caring for. We know they are in good hands. We want to hear about how you are doing with all this.