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.
Maybe writing will bring a bit of consolation or understanding that which we cannot really talk about for now. When I was first diagnosed with vascular dementia, I was so self absorbed in this horrible thing that happened to me, I did not even think of what my family must go through. There was a certain relieve to know what was wrong with me. Now it has a name and we can get educated and take it from there. It was just dark for me.
But the reality here is that I have vascular dementia, but my entire family are affected by it. They are horrified by what is happening to me, as my daughter wrote at the above link. The denial, facing the reality of the disease, watching me being affected and having to take over all my responsibilities. Putting extra stress on them, but one thing I know, is that they love me dearly and I them.
Some way we have to adapt to the circumstances and changes. But how?
Today feels like I’m losing petal after petal of my mind flower. Got up not feeling so great. Why don’t you feel great or okay or what is wrong, would someone ask… I simply cannot really tell you. One thing however that got me crying again was the fact that I am having difficulty making conversation. Someone that talks to me just every now and then might think I’m not doing to bad. But to find the right words, following a conversation is difficult for me. Even understanding some things people say is becoming difficult. As long as they keep it simple, it is still okay.
This morning I was trying to have a conversation on Line app with a friend from Dawn of Titans, Falco. (Dawn of Titans is an online game that I’m playing) I knew what I wanted to do, but messed it up so bad. Even send her a voice message just after waking up with my voice still groggy. I just want to help her with her alliance, but I cannot do that anymore. She was so sweet. Told me it is okay, she will just read the idea and the emotion. If she needs something explained, she will ask. I just had a telephone conversation with a friend of mine and I think I did not to bad 🙂
My youngest will send me a screenshot of her study material and another one of what she wrote as an answer to a question, just to check if she did not commit plagiarism. I cannot do that anymore. By the time that I got to the piece she wrote, I can not remember what the other thing said. She phoned again and asked me to look up something in one of her psychology books… the going from one page to another or down the index is difficult, as I continuously have to go back to the question. When I read it, it is interesting, but does not really makes sense. I don’t know if that sounds right… expressing what is happening, is difficult. My concentration and focus is zip. I find that I am very impulsive as well and that also is where the problem is.
I used to be so sharp etc. My sweet sister in law Marieta always said I’m so clever and have a brilliant mind. Still knowing what I’m losing makes me sad.
Something I must try to remember, is to try not to be harsh on myself. There is no way that I can help it that these things happen. But how do you accept these things? Is it possible to get used to it? Or as I understand a time will come where I will not know these things is going wrong. In Dementia Mentors Virtual Cafe I have met many friends now that has been living with these Dementia things for many years and they are still functional, however limited and assisted. They still give talks to tell people from the person with dementia self. Not seminars about dementia etc, but from us that lives with it. There are many ways dementia can be told. From an academic and research view, Neurologists and doctors, from caretakers and then from the person living with the dementia. I have vascular dementia and there are other forms too, but it looks to me that no two persons are the same or affected the same. Some symptoms are sort of standard or something like that, but living with dementia everyone finds things different.
I am going to say goodbye for now, I’m getting myself confused now. Have a lovely day.
Hi there 🙂 Few days since I wrote a blog. Been busy busy and busy. However I’ve been reading my favorite blogs. Everyone I follow are my favorites and thank you for all the new friends following my blog. I love yours too!
Yesterday was quite some day. I’m trying to help my eldest with her teaching practice projects. Now the theme is farm animals. Now thinking with dementia sometimes is like morse code. Think, think, gap, think, gap, gap, gap, think, think , quite some gap-a-thinking. Not to mention remembering: talk, talk, talk…. what the hell did we talk about? About shoes, reminds my friend, shoes… shoes… shoes? Nahhh Have I told you the story about my grandmothers chickens?…. yes dear half an hour ago. Dang.. Ok How are your chickens doing? She farms with chickens.
Now about the teaching practice projects. I’ve been trying think of nice easy projects the little ones could do. Wait, what about a mask of a cow. They can make a collage on a paper plate. Next moment, I’m trying to remember what a cows ears looks like, but in my memory image of a cow, I just don’t see ears. Not pointy ones, not hanging ones etc. Next question to my husband… Hi, does cows have ears? You must have seen his face! Of cause cows have ears, all living things have ears. For the life of me I still couldn’t picture the cow’s ears. Later we went to town and passed some cows. My husband applied the brakes very enthusiastically and showed me cows next to the road. See love, they do have ears. Big floppy ones. Ok cows have ears. In bed last night, he googled some cows and showed me the ears… sweet old darling.
Now that was just me. It was very, very cold yesterday, with strong wind and rain. My husband went out to take his suitcase out of the car and decided to go park the car in a safe place. Just guess what… he forgot that he placed the suitcase behind the car. Whoopsy daisy there he ran over the suitcase. Right in the middle, he said. I wanted to know if the suitcase was still okay and the contents. Nope not going to look. I think he was a bit worried. When we got to bed he put the suitcase on the bed… well it is still one of those old good ones. No damage, all just fine, he declared with a relieved smile.
Having dementia is not all sad and horrible, you can make the best of what you still have. It all lies in attitude and all that type of things. How you look at it. On the other hand, on a bad day I would have cried my eyes out because cows don’t have ears. Dementia is a horrible thing and difficult, but I decided to live every day to the fullest.
Got to go now. Am going to help a friend of mine that has cancer to wash. Helping others also help you. It makes you feel, you are still okay and can still mean something to someone else.
Today I would like to talk about: Who am I? Many of us go through life with the wrong perspective of who they are. Now let me tell you about this.
When we are born and growing up, there is no way in your development that really can give you a true sense of who you are. I might be wrong and there might be some super human that knew right from birth who and what they are or I have not read enough of my young ladies university psychology development books. But one thing I know.:
Our first impressions as we grow up, are what is reflected by either adult family members, older siblings, friends or strange people. It is like looking in someone elses mirror. There might be a horrible aunt, that have a deep down hatred in her life/heart that always are angry with you no matter what. Your mother might have an inferior complex and all you see is that you will never be good enough. Another person might always be negative, because of that persons life experiences. So growing up is like standing in a room full off mirrors. One makes you feel unwanted, one not good enough and even some lovely person that makes you feel loved.
Now I found that if you wait for the world and outside factors to make you feel happy, wanted etc. It is not going to happen. It will only last for a moment and then you have to go and find something else to fill up your own mirror. Somewhere in life you have to go and sit down and look at yourself and your life and figure out who and what you are. What defines you. What makes you you. One way is to make a list of your good qualities and bad qualities (you will have to be brutally honest). A list of what you like or don’t like, not someone else. You can even make a list of your accomplishments and failures. Take a good look at it. I am pretty sure that you will be much more confident and happy in finding yourself. Be your own person. True happiness and peace comes from within. Not from external factors.
Another way that I found worked for me a hundred percent was when I found out who I am in Jesus Christ. He is the one person that loves you unconditionally and He made you a wonderful being. There is no one else on this entire planet that is the same as you. Yes we all have done bad things some time or another, but who didn’t. No one is perfect. The only one that is perfect is God. God gave us His peace, that lasts forever.
And no, you are not going to be all of a sudden this hysterical happy hopping around chipmunk. We all have our ups and downs, but the difference will be…. YOU WILL KNOW WHO YOU ARE.
I would really appreciate it if you can share any of your experiences or ideas on this.
Hi there. I must find a way that I can blog every day. Today was a funny day, I guess a dementia day. My cellphone updated, now I have to figure it out again. So did the apps. My emails changed and I simply could not send an email. Trying to send one to my friend Minna from Suddenly Mad, but I guess I will figure it out again. I joined a Zoom chat with Dementia Mentors and were pressing buttons hihihihi. Well somehow I have to figure out how it works lol. It sort of makes me sad, because I used to be so good with computers and cellphones and stuff. Even finding my way around WordPress seems challenging some days.
Some days I wonder if I suddenly became stupid or something. Someone told me it is the blog fairy that is moving stuff around. Sounds good to me.
Sitting here typing about what I find challenging lately and that it makes me sad, just got me thinking… I AM NOT THE GIVING UP KIND OF GIRL. No I am not and never will be. There are so many things in life that I went through and I am still here, 56 years old.
You can make it, I did. Maybe you or I don’t see it now, but I promise you will make it, whatever it is you and I are going through.
I have a coping mechanism or two. First of all, if I did not have God in my life, I would not have made it. And for goodness sake having dementia and strokes is not God punishing you or that you have so many sins etc. The Love and Grace of God is new every morning.
The other one is making jokes. It’s not bad talking between people with dementia and making jokes only people with dementia would probably understand. Peter one of the guys on Dementia Mentors said that we should live our lives to the fullest. I am doing just that. Some days are foggy yes, but other days are good.
The other day my husband send me into the store to go buy candy (I haven’t been in a store in a long time). I fetched what I wanted, the cashier recognized me and chatted me up. So I took my candy and left… She came running after me Auntie, you forgot to pay. So I went back, payed and told her, next time she sees me, she must ask me if I want to pay cash or with a card. So that was sorted.
Another funny thing I find myself doing is sensory. My hands and fingers. If I cannot remember if I took a specific pill with like a aluminium foil covering on, I just try to remember if I felt the taking out of the pill and the feeling of the sharp edges. If I do, I know I took it. I don’t know what other examples to give. But I try to remember the sound or feel of something and it helps me remember. It is very strange, but it sort of help coping. Sometimes it does not work, but most of the time it does.
I must go and sleep now. Have a lovely day or sleep well.
Please tell me if you have any things you use to cope with the dementia stuff. I would love to know. I need to learn. I will share from my side too.
I will never give up or lie down. I will go out kicking ass… that I promise!
My life with dementia and bipolar disorder. 