Being diagnosed with vascular dementia, I decided to share my side of the story, while I still can. Sometimes it will be sad and sometimes beautiful or funny memories.
I woke up this morning feeling as if I have a hangover, if I remember correctly. Last drink I had was in 1994. My liver just could not cope with all the medication and alcohol at the same time.
I can’t think… my head feels like a sement brick. Not even marbles rolling around. I can’t look anyone in the eyes, being ashamed because I cried last night and am crying again now.
I still battle to get over being told that I’m so much loved that she wipes my SHIT and PIS. That sounds like swear words. What about saying helping when you have to change your diaper. Is there anyone that understands how demeaning it is to wear diapers at 58?
I try to make it easy for myself to tell a friend or 2 about the diapers…. and now the whole world knows, so that it just not become one big black shameful secret.
What should I do if I feel insulted or wronged because I understood incorrectly? What am I to do when I say or do something wrong because I didn’t understood or thought wrongly? What if I say wrong words because I don’t have other and then I forgot I said so.
I can’t reason anymore, or plan and lots of things. I write with great difficulty because of hand tremors, but I can draw and paint, how that works, I have no idea. I suppose it must be like people that had a stroke and can’t talk anymore, but they can sing beautifully. Maybe different parts of the brain.
I don’t want the strokes… I don’t want the dementia!!!!! It makes me miserable. Some days I feel courageous and other days I feel like this. I feel stupid, incompetent and useless. If my family reads or hears this, they will assure me that it is not the case, but it is how I feel.
The Bipolar does not help either. It is something that has been haunting me for practically all my life. Suicide attempts, horrible highs and then the terrible downs, where all is black with no hope. There is also the aggression. That is the worst of all. It makes me a monster. It harms me and my family equally and sometimes I think it harms me most because of the guild and sorrow.
I am on so much medication that if I take any more, I will be a slobbering fool. The medication is a mood stabilizer and the Dopaquel takes care of the aggression and insomnia. Obviously there is nothing to be done on the dementia medication wise. They gave me Memantine for 6 months, to see if it keeps the decline less, but I don’t see any and have stopped taking it. The other medication I take because it keeps me alive.
Then there is the anxiety and epilepsy…. I think I cover almost all the bases on what can go wrong in the head. Thank God I am mentally and behaviorally stable and don’t have personality or something like that problems.
I just can’t stop crying today. My husband is in a sh@t mood as well and that’s not helping. I cannot handle conflict. That simply is too much for me. I feel as if I cannot do anything anymore, which is not really true, I can still wipe my own butt so to speak. I keep on putting things away and when I or everyone else starts looking for something such a huge cloud of anxiety comes over me.
I cannot say something about my husband here, because it will not be right, I do love him though, but I think he needs help as well mentally. How to address that is beyond me. My kids are a tremendous help and comfort.
All these things is not written on my face, or scars or something. It is in my fricken head. As long as I keep my mouth shut nobody will be any the wiser. I do have a speech impairment because of the strokes and the cognitive impairment is …. as I said as long as I keep my mouth shut.
But how can I shut my mouth and not talk, because with the dementia in the later stages my speech will disappear all together.
Many people think that having dementia of whatever kind you are immediately unable to walk talk or function. It is not true. You can still have a meaningful life for many years until THAT DAY comes. Yes we need assistance and the assistance will be increasingly needed. But people are not all of a sudden this monsters that does not want to shower or whatever. Yes I feel sorry for the caregivers and I am very very grateful for what they do. They dedicate their lives to take care of their loved ones. Thing is the ME does not go away. I will always be there, even if it looks like I’m just a shell. Nobody can suddenly go from somebody to a nobody. Until the day you die, you will be a somebody with a name. I am Saro or Elmarie.
All this is breaking my heart for myself, my family and everyone that have the same conditions. But life is not fair. Nowhere is there any guarantee that life will or is moonshine and roses. If someone have cancer or some other disease everyone go and visit etc. Most of the people that I speak to that have dementia said that they have lost friends and even family. So many are lonely. I am so grateful for Dementia Mentors that introduced me to friends that are the same as me. Days like this I just want to curl up and die or something like that and no dear daughters of mine that reads my blogs you don’t have to put me on suicide watch. I will most probably recover and be on my merry way again. I am not going to re read this post so please put up with the mistakes and thank you for reading/listening, it is appreciated.
My life with dementia and bipolar disorder. 