Long-Term Caregiving. Just how do we do it all?

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CamilleHy
Long-Term Caregiving. Just how do we do it all?

Hello everyone! I am new to this site but not new to caregiving. This may be a little long, but I encourage you to read it. I encourage you because I know that you can relate to everything that I am going to say.....

I've been taking care of my husband for 20 years now, worked full-time as a legal assistant and raised three wonderful children who are ages 20, 22 and 23.

JUST HOW DO WE DO IT ALL? I believe you do what you have to do when you have to do it. You get through it. You have to. Someone's life depends on it. Your family's life depends on it. That's a whole lot of pressure!!!!!

My husband contracted Hep C in Vietnam, 20 years later he went into liver failure, liver transplant, then kidney transplant, then throat cancer and two more surgeries, then mini stroke resulting in seizures, then serious car accident as a result of seizure while driving, necrosis of hip, fractured vertebra (more surgery), diabetes and everything in between. He is on so many meds it is hard to count - including some heavy duty morphine. He has now developed demetia from the seizures. We surely have been through a lot together - not just him - but me and my children as well. They were 1, 2 and 3 years old when it all started!

At the very beginning of his health issues, I would sit at the hospital and listen to other patients tell me that their spouse had left them because of their health. You know, at the time, I just didn't get it. Why would someone just get up and leave their loved one (spouse) when they needed them most? Well, now I know. They either (a) just couldn't handle the "burden" or (b) were being selfish. We don't have to do this. We can just walk away. RIght? But how can you live with yourself? I know I couldn't. And here I am, 20 years later, stressed out, burned out, overwhelmed just as much or more than I was at the beginning. But I know one thing - my husband is also here - spending time with our children and me. It may not be the best quality of life time but he is still with us. And that I am very thankful for!

Well I've found out one thing - well - really I've found out a lot of things about caregiving. You know, as I looked through the discussion lists I didn't know which one to pick to talk or comment about. They are all very valid and real issues. Caregiving is one of the most - if not the most - stressful "jobs" on this earth. It is an emotional roller coaster. It beats you down, burns you out, worries you to death, and never stops. It can be very depressing, it makes you angry and resentful. It is totally overwhelming - from beginning to end. It changes your whole world - your life. Especially if it is your spouse. You start losing your best friend, your soul mate, your lover, your husband, the man you used to know. You start losing yourself. And yet, it never ends - this roller coaster of a life. I have a quote that I found and try to abide by it. It goes like this: "Wake up each day and be thankful for all of the good things in your life; concentrate on the positive, not the negative; and this will get you through even your worst days....

I am hoping that this "quote" helps some of you out there as well. We all have a big responsibility on our shoulders but yet we don't walk away. We all should be very proud of ourselves!! We have basically given up most if our hopes and dreams that we had with our spouses "in growing old together." We have basically given up our lives to "care" and to "fight" for someone else's life - and that should be rewarding in and of itself!!!!!!! So, you see, despite all the ups and downs of this roller coaster we are on, it truly can be a rewarding experience. My husband is living proof of it!!

I've been caring for my wife

I've been caring for my wife now for 13ys.You are an amazing woman.I know about all of the emotions you've talked about. My wife needs total 24/7 care. She was hit by a car and has TBI.She no longer walks and talks .She has a feeding tube and a trach.I do have some help during the day through the waiver program here in Md. Before her accident she was pretty much taking care of me as I have nerve damage in my lower back that radiates down my legs. I also have been diagnosed with hep c that I must have contracted threw the blood I was given from the back surgeries.I was on that medicine they give you for that for 49 wks last yr.How I managed to care for my wife during that time had to be with the help of God because some days I thought I was going just die .Thankfully the medicine worked .I could have never imagined myself doing this but love will make you do things you would have never imagined. I just hope and pray that God continues to give me the strength he has given you. It gets harder and harder as we get older. I thought about puting my wife in a nursing home but I just can't do it. I love her to much to just watch her waiste away in a nursing home. Thank you so much for doing what you are doing and taking the time to read this and may God always bless you and your husband.

God bless you, my friend! At

God bless you, my friend! At least I was never burdened with health issues of my own other than anxiety, panic and depression. Don't know how you did it - and got through it. You, too, are amazing!

I've been married for 30

I've been married for 30 years to a wonderful woman who has severe cerebral palsy. Since June 2013, she also has serious psychiatric problems (24 weeks in hospital since June 2013).

What is killing me is the lack of information I get from the medical world. It kind of feels like natural caregivers are a necessary evil.

Whenever my wife gets out of the hospital, the local social service network gets a complete hospitalization report, but I have to fight with just about everybody just to get the information I need to go by.

But, the worst of the worst is when I hear people saying: "I know (understand) what you're going by."

I feel like beating the cr-- out of these people. Nobody can really understand what we're going through unless they go/went through life with a handicap person needing help 24/7 to go by.

Don't mistake me, I'm not going to send my wife away. I'm just fed up with the whole medical/social network that works more for itself than for the people it's supposed to care for.