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.
Category: Dementia, bipolar
Coping and living with dementia and bipolar every day.
Hi everyone.😊 Me and my eldest had a fight today. I suppose it’s my fault.
I feel guilty because of the stuff I can’t do anymore. But thing is, I did not ask for this dementia thing and it’s not my fault.
My house was running very smoothly up to some time ago. Everyone had his task and responsibility. Each were allotted that which they liked. So smooth running.
Now we have to adapt and I notice, that it is not that easy. Well adapting in itself is a difficult thing
I tried to make food today and halfway I suddenly felt heavy, sleepy…. As if I couldn’t move or think. It happens often now. I’ve been advised by my Dementia mentors friends, that I should go sleep, but I couldn’t. Lora actually came home to pay the bills, which I can’t do anymore. She eventually finished the cooking, for which I’m grateful.
We will have to adapt somehow. I mentioned many times how my heart is broken for me and my family. I suppose I will need to let each one come to terms with it on their own. It still is a painful thing for my family to discuss.
We have always stood together, face the problem and fought it together or found a solution. We always came through the toughest times and situations. This is no different. We have before and we always will, because we don’t have to do it on our own or own power. God is with us, have been and always will be…. and that is enough.
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 head is so foggy and down right screwed today, but it was all worth it.Actually my head feels like that chicken’s hairdo. Yesterday Fairyland pre-school had an outing to a friend of ours chicken farm. The picture is of my eldest daughter with her favorite Sylky chicken, Lora (She writes as She Wolf). This is a link to her blog, she gives her side and experience of living with my dementia. http://adairyandsomefeathers.home.blog/2019/07/25/are-two-heads-better-than-one/
Well I volunteered to do the chickens and rabbits. They came in 5 groups. First group, the teacher had to give me a few pointers as to what to tell the kiddies. Like where the chickens comes from… o dear. Second group went a bit better, but by the third group I had to keep on asking the teacher if I said this and that already. Lol one kiddie picked up a rabbit poop and put it in his mouth. I just put my hand in front of his mouth and said… spit… spit.. spit.. The next groups went a bit more difficult for me, but I managed. I am so proud of myself that I could do that. After that I still had to do my kids at the Aftercare Center… that pushed me over the edge. But I still managed.
Having dementia does not mean you are useless. You can still do things other people do and I’m not afraid to venture out. It is difficult to keep my thoughts straight writing this. I made friends on Dementia Mentors Virtual Cafe that can’t read or recognize people anymore, but they still give lectures on dementia… our side of it, to big audiences. And there I fricken cry again. I realize there will come a time when I really will not be able to do anything, but while I still can, I will live life to the fullest.
Something that is sad, is that people that loves you becomes so protective that they just don’t want you to do anything. I took my night meds the other day instead of the morning ones the other day. Nothing happened, I just slept all day, that I think just did me some good. I recently stayed 3 weeks on my own, with my friend across the road checking in on me without any trouble. I just cooked our meals for 3 weeks on my own… with instructions, but I did it without setting the house on fire or harming myself.
Can’t remember what I really wanted to say anymore. Let me go see what I can do without using my brain…. Wonder how long it is going to take me to recover.
Just a note to whoever knows me and reads this… don’t worry because my head feels shit after everything I did yesterday, I recover and will kick your fricken arse if you refuse to let me do things again. Please I want to.
Love and kindness and sorry for the bad words at the end.
They said you can blog on the go. Well I’m on the go to dreamland. About 20 minutes before meds kick in.
Had a good day. Kids in aftercare were good. And I had an awesome zoom meeting with my dementia dementors friends.
What is ao good about the DM, is that you can be yourself. No judgement. If your speech is impaired, you use sign language and carry on until we get it right. That is only one thing.
We lose friends because of the dementia thing, because people don’t always understand that you still can have a good life however assisted.
We talk about Churchill, aeroplanes, being scared of anesthetia or crocery stores that confuse us with too many choices. Even crowds and the noises that freakes us out.
We still have things to do or like to do and still do. Sometimes we make jokes about dementia.
Life does not suddenly come to an end after a dementia diagnoses.
Last night I had a 100 things I wanted to write about. Today my head just don’t seem to want to work. I guess today is not a good day. I wanted to cook today, but just couldn’t. Lora eventually did. I thought I will help, but used the wrong pot or pan, just couldn’t see or realize that a bigger pot was needed.
I read some of the reports from the neurologist and other specialists and the CT scan. Most of the things I googled, but here is some advise….. don’t read the fricken reports, it is upsetting. It is worse enough to live and try to cope with dementia than to read the clinical and emotionless reports. Expected cognitive decline, slight retardation and some other sh@t is not good to know. Yes you have to know what is happening to you, but some information is just too much. I used to be a highly functional, capable and intelligent person. I believe I still am within the parameters of the vascular dementia and the damage the strokes caused as well.
Jennifer that I met on Dementia Mentors used to be a doctor. She also have dementia, she told me that they very often call her to sit with someone that is dying of dementia and they go peaceful. Shawn another friend of mine from DM told his sister had a near death experience. She said it was so peaceful and happy and she felt so whole. She did not want to come back. God is awesome. He will never let me down I know. Jesus is my only hope and salvation, my peace and my joy.
At DM we also discussed “getting our affairs in order, while we still can” This is something I must thing about very hard. I know I will need to give my family power of attorney, my will and I want a living will as well…. have to figure that one out still. Me and hubby discussed this. I want to go to a place where they can care for me when the time comes instead of staying home. They can visit me a hundred times a day in the care facility and I can meet them a hundred times again, but I refuse letting them give up their lives caring for me when I’m bedridden or something like that. I know they want to, because they love me, but I’m not selfish. I want my kids to have their own family and life.
Hello, hello, hello!!!!! Me here 🙂 O dear, everything is so busy in my house. The kids are doing teaching practice, I cook, try to play my game…. which sadly takes the back burner. My Titans and fellow Dawn of Titan addicts will just have to understand.
What is good, is that I cook, get everything ready to go to work etc. etc. etc. Even though it is done with reminders and instructions. Thing is, I’m still able to do that and hopefully will be able to do it for a long time still to come. Dementia creeping up on a person can be quite intimidating.
Something I enjoy doing, is to Zoom with my fellow dementia friends. It is simply awesome. Sometimes it is sad and we discuss what needs to be done before you get to that stage where you are not able to function anymore. Other times we wonder if there are other planets with interesting people on is and lots of flowers.
My eldest brought a nice snotty nose home with compliments from a class and 40 preschoolers… and passed it on to me. So I feel like a troll. Well a snotty nose is better than the german measels the youngest brought home last year. Sorry if this is a bit tmi lol.
I want to watch my Netflix series… When calls the heart. Such a warming story…. no time now. So there’s a suggestion for a good series.
My two brothers buried my mom’s ashes this weekend in my dad’s grave and I found out that my second youngest brother eloped in May. He got married in the magistrates office and never told us. That hurts. I would not have been able to go, as I cannot travel far anymore, but would have loved to phone him and say congrats. I really am happy that he found somebody after been lonely for 50 years. Never been married or had a girlfriend in his 50 years and now he found a mate. I am so happy for him.
Another thought I’m working on is to get some sort of dementia awareness and groups or connecting people with dementia in South Africa. All I find on Google is for Bipolar and depression and anxiety. I have all that, but it is nicely controlled by medication and I’m as happy as you can get. I think I must change my blogs name and take the bipolar part away, since I’m obviously so not going to write about that.
I mentioned it to some of my dementia mentors friends and were told it was very difficult to do and it took 6 years to get where they are now…. Well a person can try is my opinion.
Okay thanks for listening or reading or both. My alarm went off… time for meds and I don’t want to go sleep now. Already had my first warning to get up and get to bed.
Talk to you guys again… by the way… Topsy Turvey, got no idea what that means, but it sounds nice.
Hi there 🙂 Here I am again… Wish I could write more, but today I would like to tell you about the name Saro.
In 1994 I started a relationship with the dear Lord Jesus Christ. One day not long after the happening someone told me the following story.:
A woman went to a small town without anyone she knew knowing. Every day she would go sit quietly in a small chapel after first putting a yellow rose on the altar and said:”Lord, to You I pledge my loyalty”. She did that for a whole week and then went home. About three weeks later a friend of hers came to visit her. Her friend gave her a bouquet of seven yellow roses. Her friend said that for three weeks as she went past the flower shop, she heard a voice telling her to buy her friend seven yellow roses and tell her Jesus pledged His loyalty to her. She said she argued and said, why not red roses for the blood of Jesus or for love. But the voice was persistent. So here are your roses and Jesus says He pledge His loyalty to you. The woman started crying and told her friend about her visits to the chapel and the yellow roses.
This story really touched my heart and I would think of it all the time. One night I woke up and I saw a hand writing on my wall: SARO. I asked what it means, because I knew it was God, and he said:”For ever faithful” I fell asleep again after that. The next morning as we left the house, next to my front door was a rose bush with yellow roses on. We did not plant it, there was no indication that anyone planted it there. It had roses all year around, never needed special care. It was special. Since then, my name was Saro in my heart. No, nobody calls me Saro, they call me Elmarie. When I write something I write it as Saro, I name my pets Saro, my name in my online game is Saro.
Saro I am…. for ever faithful to my dear Lord Jesus and He to me.
What a busy day. Eldest daughter making and experimenting with hot sauce to sell for an extra income. She keeps on insisting that I taste it, but listen, let me tell you. It will be the day if my mouth burns so that steam is coming out my ears like a steam train and me hooting searching for water.
The youngest want to make soap for an extra income. She already bought two ingredients. Coconut oil and peroxide something. When I asked her to show me what it is that it is she bought it was drain and cement cleaner. O dear Lord. The skin will come off. So we convinced her that pealing skin off a person is not going to work. Now 7:35 pm she found a lotion recipe. Off she go like a happy little hamster. There goes my essential oil, but that is okay.
I am so proud of these two munchkins of mine. Real entrepreneurs. In between they are preparing for their teaching practice that starts tomorrow.
My friend Marian had to run after 4 little piggies that got out all day, she is bushed. I had a zoom chat with Dementia Mentors and misunderstood something about one of my friends leaving and I thought it was the zoom chat, which I live for. It is where people with dementia socialize. So I started crying and trying to give him advice. When I stopped with my advice, they kindly told me he is going nowhere. It is about some other thing that he is doing. O dear….
OH me and my husband are married 30 years today. What a wonderful thing. To love and to be loved for so long. Poor man just looked at us and shook his head.
Now I have to go take my meds and go sleep.
Oh sh@t…!!! youngest is using my almost new kitchen utensil for her lotion experiment. Eldest… don’t break it, I need it for my hot sauce. My house is a disaster area. Tomorrow my Aftercare Center starts again tomorrow after a three week holiday.
Think I must go sleep now. Nooooo don’t use my bottles, it was expensive, going to charge you with theft. I’m hungry. In between they are watching netflix. Dear Lord, how I love my family
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.
My life with dementia and bipolar disorder. 