I Look Forward


I Look Forward

I do not like admitting how much happier I am and how much easier life is for me with my husband in the nursing home. As a result, I do not like being honest with myself about him coming home. It is time for him to come home. I think he is as ready as he will be at this time. I want to do what is good and right for him. The kinder and softer part of me is sincere in that commitment. I have had too much time away from him living in the home. I have finally begun to identify myself in all of this quagmire. I am not sure I will be as kind or as loving as I was before he went to the hospital and then the rehab/nursing home. He has been gone since early December. I have visited and advocated and listened. I have stood in the gap for him and I continue to love him but I do not look forward to him coming home. I am told this is normal and that we all feel that at times or even most of the time. I hate this disease that creates a place in me that is capable of wishing someone I love could stay in the nursing home. It isn't me any more than the ftd is my husband. Both of us bear the scars and the emotional damage that comes with the territory of being a caregiver and a caree. And so, on to the remainder of this blog.

My life accomplishments consist of, and I am going to lay it all out here and for a good reason, being pregnant at 18, becoming an alcoholic and a drug addict, marrying one loser after the other until I married the man I am with now, recovering from early childhood abuse, bringing trauma and chaos into the lives of my children, battling ptsd, having my son receive a closed head injury after being thrown from the back of a jeep, having chronic fatigue immune dysfunction for eight years before it went into remission, being diagnosed with copd, chronic bronchitis, acute asthma and such. There's more but I cannot remember it at the moment.

The rest of the story is as follows: I am now 34 years clean and sober. I have two children in their 40's and four grandchildren, my ptsd is much improved and my physical illnesses are, for the most part under control. I have been married 20 years to the same man. I have been his full-time caregiver for a number of years. He has a rare form of dementia called frontotemporal dementia. I am a Christ follower. I live in a mobile home eight miles from the coast of North Carolina and, at times, do not have a penny to my name. I do have money coming in but it gets gone and that is my reality. I have four cats and a partridge in a pear tree....o.k....the partridge in a pear tree part is not true. Just wanted to see if you were listening. I sponsor women who are recovering from drugs and alcohol from time to time. I am 66 years old with a wicked sense of humor and a love for life most days.

Why am I going to all this trouble to tell you about myself? Oh, and I forgot that my son's father tried to kidnap him three times and tried to kill us in an extremely violent incident that we, fortunately, survived. I want you to understand that I qualify for having seen a little bit of life so that when I make the next statement, in the next paragraph, you will know I am saying something profound and deep and from the perspective of someone who has seen a lot of life.

Participating on this site through chats, blogs, webinars, podcasts, messaging and phone calls has provided me with eyes to see into a world I did not know existed. I knew people suffered, were injured, had all manner of illnesses. I had no context for the reality of caregiving. I had no clue of the exhaustion, sorrowing, grieving, fears, anxieties, financial devastations, tears, loneliness, life-changing events happening in a seemingly endless string of one thing after the other. I was completely unprepared to find myself a caregiver and relating to caregivers across our country and into Canada. This is particularly poignant for me tonight. I stayed on the chat beyond the designated time and several people came into the chat. Without betraying anyone's privacy I will say that the sharing and the unfolding of personal stories tonight flat broke my heart. That happens here at caregiving.com on a regular basis. I am humbled by the sacrifices made, the strength of men and women who do not believe they can carry on for one more moment and yet they do and the honesty they bring to us in their daily stories. No one wants to be a member of this club. No caree wants their loved one to be a member of this club. Caregivers and their carees are faced day in and day out with a reality that is merciless and relentless. Many of us find solace in our faith, strength through friends and loved ones and many of us do not have these resources. All of us come here and find a place to share our truth. We share how much we love the person we are caring for and how much we want to be strong and to provide solace. We share how we are ashamed of ourselves when we realize that there are times when we wish the caregiving would end and we would be free to pursue our own lives. We talk about the frustrations of an imperfect medical system and the cost of medical care and the division of our families as we find out that we may be the only one in a family who will step up to the plate or that, those who do participate, disagree with us and the caregiving world becomes a battleground. As we get to know one another and we share ourselves a magical change happens. Our burdens seem lighter. We share resources with each other. We reframe a way of thinking that may have been plaguing a caregiver for months. We reach out to each other with acceptance and there is no judging of what we hear and share. We all know that this too shall pass. We all know that being heard and cared for is better than a medication or a drink. Caregivers helping caregivers in a venue that allows freedom. There are many other wonderful things about this site. Opportunites abound to prepare us to give back and pay it forward.

Tonight I was privileged to share with other caregivers and say, "Me, too". I heard my story worded in sentences I could not put together but I knew in my heart. Tonight my heart was broken, mended, filled with love, offered encouragement and prepared for tomorrow. I know when I sign on tomorrow that the chat may be different, maybe funny for the most part, or deeply sad or practical in sharing. I know I will be heard if I say I need to be heard and that I will have the opportunity to listen and share my experience, strength, and hope.

I have lived a full life. A life full of wonder, full of tragedy, full of drama, full of loss and healing and love. In all of my life thus far I never dreamed to find a place of solace during the most difficult and challenging time of my life. I had no idea. I pray I will have an idea today. I pray I will listen with an open ear for others who are suffering and have no idea we are here. I pray they will find their way to us and I look forward to sharing myself with them. I look forward to chats filled with caregivers seeking to serve others like themselves. I look forward to being heard and loved. Wow! I am a caregiver and I am actually saying, "I look forward!"

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Bless your heart, Lark. Thanks, once again, for sharing.


You've accomplished a lot in your life. Love to you and your husband! We'll get through this time much easier and healthier as we have each other.