• entries
    215
  • comments
    1,685
  • views
    42,659

return to life


nancyl

870 views

To many of you who have helped me over my obstacle I say THANK YOU. Of course there has been many obstacles. I am referring to two . One placing Dan in the nursing home and two my depression.I am unsure which is/was the hardest. I take meds - thank goodness for them , undoubtedly I would be dead if I didnt have the medication available . I seem to have more good days than bad. I also need to be conscience of mania. The kids all know to be on the alert for it. It is sorta humiliating having to ask permission to do ( what ever) if it involves money. I have to ask. For now that is OK.

Dan continue to of well at the nursing home. Where I used to be ubber caregiver I am now not even able to do one more thing for him.. like a runner who is "done" I am confident I will regain that ability. I love him of course, but his obsessive behavior is something I can not deal with. Put the curtain at a certain placement, the blinds ( of course ) the bathroom door shut ,light off and the fan - that is the worst, placement of the fan in a exact position is more than I can handle . Of course I will do one of two of his requests but when he gets going on the " compulsive " I simply leave. I quit doing the tasks and tell him I am leaving, good bye. And I leave, he knows why. I leave pretty upset and of course dan is upset. Neither to the point of crying, but knowing our life was not supposed to turn out this way. But the stroke net motto " It is what it is." Has more truth ,than one who first hears the phrase for the first time. Yesterday i went and seen my brother who lives about 100 miles away. It was a absolute spure of the moment type of decision. I never had the luxury - really ever. I raised kids at a early age myself. Baby raising a baby applies to me for sure. But I managed and did a great job. that i say with confidence , but I had a great mom - so I had big shoes. so i raised the kids got to the point I / we could finally have a grown up life. Bam - here was the stroke. For Dan it was lethal in many ways. He is no longer who he was. He is different the brain damage was profound... Dan of old ,is gone. Took me 4 years to figure that out. the kids figured it out much sooner . And they used to say. Mom that is not dad. And so the person Dan is gone. And what is left is difficult to understand - he looks like my husband - but this is not my husband. And please people - DO NOT think I am in any way saying a stroke does this to all survivors. Our situation - is - Well- it is what it is... I will not abandon Dan but I am chord to live a life with out him in it every moment of every day as I did for the past year. Even when i "gone" I wasn't gone. I called home often to the kids and checked on him. i micro managed his care on the phone.. Now I let the nursing home make the decisions. My instruction to them has been follow your protocol , and the relief is huge. yes i am a case of caregiver gone wild. i mean who marches through 4 years with blinders on. Apparently me. Revelations of who I am , has been hard fought. I do want life , i want to work I want to have fun, i want to enjoy my kids and grandkids, I want to be able to spontaneously go and see family or a friend or - what ever. Guilt ? I have tons of it, tons and tons of it. I am trying hard to shrug it off as I move forward to my " new" life. I did as i have said before - i kicked of the man who was drowning me. My job as a life guard has failed. But my intentions were good. But I got in over my head. But have broken the surface. And there is oxygen, above the stifling caregiving. Do not get me wrong I see many people every day who care give it is the most noble thing one can do. Unless you let caregiving define your entire life. I cared so much, I ended up in a mental institution for 5 weeks. Whoa, partner- do have any idea how sick one has to be to end up in a place like that? But I am glad to say - I am better - but very guarded to say that. After all depression can just show up - no warning but - just there. It filters in to all of a person. Finally it over takes ones life. Then once you realize it has taken over your life. You go to doctors to seek answer, the trow a bottle pills at you and tell you to relax - is just street. Relax and caregiving not even a possibility. You start to think of ways to alleviate the pain, depression is the most excruciating pain I have ever felt. And every bit is YOUR OWN brain betraying you. Suicide becomes a viable solution. You just want the pain of life to end. It is not that you want to die, but you just don't wanna live feeling like this. No truer words for me, has ever been uttered. But I am better at least of now, this moment in my life. And that is all any of us can ask for....

6 Comments


Recommended Comments

Nancy, you know you did what you were able to do, sometimes that has to be enough.  Allow yourself to get well now.  We all as caregivers know how hard life has been for you.  I wish you well as you go forward into your "new" life.

Link to comment

I think, Nancy, that it takes a while, for all of us caregivers, to accept that our person is not going to be OK one day. Brain injury does not work like that. And most of us had no experience with brain injury before stroke. Bruce's Neuro advised that for most stroke survivors, their basic personality will return once the brain recovers - so that one year post is critical. Real brain recovery comes after that. The advantage for some of us is that we had many years, prior to stroke, to live and learn together with our partners or parents. We experienced life together and figured out how to get through the good and bad times.

 

You take it one day at a time. Continue to work every day on your recovery and still, with help from your wonderful family, continue to see to Dan's care and recovery.

 

Thoughts and prayers always. Debbie

Link to comment

One of my favorite songs, from way back when I didn't really know true despair:

 

"Many rivers to cross and it's only my will
That keeps me alive
I've been licked, washed up for years
And I merely survive because of my pride"

 

You hang in there and I'll talk to you soon......

Link to comment

I'm coming on less often these days but do still check in to see how people are. I always want to see how you are doing. I'm glad you're reclaiming life and making spontaneous trips to see family. I just need to say that you didn't fail. You went far beyond what most of us would have been able to do to keep Dan healthy and at home. His condition was too extensive and demanding for you or any one person to manage. Now he is in a place where many people can band together to give him the care he needs. I expect even they find him challenging at times. His care is not perfect--not as good as you would prefer. But it is okay and he is managing better than you might have expected. Letting go of the daily managing is the right thing to do. 

 

I understand the guilt. I still feel guilty about so many things. I guess it is also part of caregiving and, in my case, part of dealing with the loss of the one you love. We have to make decisions we'd rather not make and then the what-ifs come into play. 

 

When Lauren was in the nursing home, I discovered I did better if I took a day or two off each week from visiting him. He was 1/2 hr away from me so each visit took at least half a day. It was refreshing to wake up once in a while and realize I had a day to myself. I still feel guilty about needing that but, honestly, I think it made my visiting time more helpful and supportive to him. We are human and we just need to recognize that we also have needs that must be met in order for us to function. I'm glad you are taking the steps necessary to help you function well in the world. I wish you all the best as you continue your journey--with Dan and also those times when you are on your own.

 

~~Donna

Link to comment

I wake up every so often - and think the pillow next to me is him.. never had thoughts like that. And of course in the past he  was right there.... but since the nursing home about in april - home in may,, started this bed thing about mid aug. it is a comfort of course but wow never -- expected this. not harmful ,just wish full...

Link to comment
Guest
Add a comment...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.