My Lewy Body’s Dementia
Is Respite the next step??
Without a doubt my night terrors are getting worse, last night, in my Night Terror/Hallucinate state?, I was attacked from behind and as I turned to face my attacker, then attacked from the front. My legs kicked out and my arms struck frantically at my alleged attackers but to no avail as they kept coming back time after time, and all the time I was screaming for someone else to help me as I was convinced my family were in danger. Then a vice like hold took hold of me and eventually I recognised Elaine’s face, gently asking me to come back to her and calm down, all would be ok.
Within ten minutes my head was back on the pillow, only to find I was in a huge room, looking at a list of people who had not survived the merchant navy ship expedition which had just arrived back, and on the list was my very best friend. I was told by an officer he had died of Hypothermia and then fell to his death from the ship, they passed me his belongings but I had no one to give them to as all his family are passed on. The Officer continued to try and tell me what a fool my best friend was, he was incessant and very hurtful. Just then he lunged at me and at this point I once again found myself being brought round by my angel Elaine.
Within, what seemed like minutes I was being led back from the front room, back to the bedroom by Elaine? After she told me she had found me wandering around the front room, switching the washing machine off and turning all the lights on. A few times later, I have a vague memory of her asking me to turn over or being gently told to shhhh as I was shouting and screaming once again.
This, my dear friends is just a mere snapshot of one of our nights, which, unfortunately spills over into our day as I feel on edge all day. The slightest noise makes me jump and I hear people shouting where there is none!! It’s been an awful day today as we are both Exhausted and very tetchy!! The thing is, on a good day, I can deliver a presentation without any problem, in front of thousands of people if necessary, but after a night like last night I can hardly put one foot in front of the other. The two opposite points of this disease is so very far apart, and as much as you try and tell people that I have good days and bad days, I don’t think anybody really gets it unless you are in this position as a carer or, like me, someone who actually has Lewy body’s.
If I sat in front of my social worker and the manager of a care home tomorrow and said I wanted weekend respite, if my night before hadn’t been too bad, then they would look at me as though I was asking for the WORLD!! There’s no way they would say yes, when I am sitting there, lucid, laughing and joking and looking (for the entire world to see) as healthy as anybody else!! But the truth is, deep down, both mentally and physically I am in turmoil!! Not only am I being told I am doing things I have absolutely no memory of (words cannot describe this feeling) but I have to look at the only lady I have ever really loved, see the lines etched on her face, the tiredness run through her bones and the beautiful smile she always manages for me, when I know deep down she is Exhausted.
LEWY BODY`S, as like any other Dementia is without a doubt the Devil Incarnate, it saps you of your energy, your drive, confidence, enthusiasm and life force until it drains you and all around you of any ounce of sensibility and reason. So what’s the answer? Do we keep the Social worker and care home manager on standby?? And hope they will be around at the right time? If I am totally honest, I don’t have an answer, but it’s a question that will need answering sooner rather than later I think.
I HATE THIS DISEASE!! I hate this disease more than I have hated anything in my life!! That’s one thing I am so certain of!!!! So maybe my respite days are coming ever closer, and if they are, there is only one proviso, I hope they have unlimited access to a computer for me!!!!!!!
A Very tired, Norrms, Elaine and family xxxxxxxxxxxxx
Is Respite the next step??
Without a doubt my night terrors are getting worse, last night, in my Night Terror/Hallucinate state?, I was attacked from behind and as I turned to face my attacker, then attacked from the front. My legs kicked out and my arms struck frantically at my alleged attackers but to no avail as they kept coming back time after time, and all the time I was screaming for someone else to help me as I was convinced my family were in danger. Then a vice like hold took hold of me and eventually I recognised Elaine’s face, gently asking me to come back to her and calm down, all would be ok.
Within ten minutes my head was back on the pillow, only to find I was in a huge room, looking at a list of people who had not survived the merchant navy ship expedition which had just arrived back, and on the list was my very best friend. I was told by an officer he had died of Hypothermia and then fell to his death from the ship, they passed me his belongings but I had no one to give them to as all his family are passed on. The Officer continued to try and tell me what a fool my best friend was, he was incessant and very hurtful. Just then he lunged at me and at this point I once again found myself being brought round by my angel Elaine.
Within, what seemed like minutes I was being led back from the front room, back to the bedroom by Elaine? After she told me she had found me wandering around the front room, switching the washing machine off and turning all the lights on. A few times later, I have a vague memory of her asking me to turn over or being gently told to shhhh as I was shouting and screaming once again.
This, my dear friends is just a mere snapshot of one of our nights, which, unfortunately spills over into our day as I feel on edge all day. The slightest noise makes me jump and I hear people shouting where there is none!! It’s been an awful day today as we are both Exhausted and very tetchy!! The thing is, on a good day, I can deliver a presentation without any problem, in front of thousands of people if necessary, but after a night like last night I can hardly put one foot in front of the other. The two opposite points of this disease is so very far apart, and as much as you try and tell people that I have good days and bad days, I don’t think anybody really gets it unless you are in this position as a carer or, like me, someone who actually has Lewy body’s.
If I sat in front of my social worker and the manager of a care home tomorrow and said I wanted weekend respite, if my night before hadn’t been too bad, then they would look at me as though I was asking for the WORLD!! There’s no way they would say yes, when I am sitting there, lucid, laughing and joking and looking (for the entire world to see) as healthy as anybody else!! But the truth is, deep down, both mentally and physically I am in turmoil!! Not only am I being told I am doing things I have absolutely no memory of (words cannot describe this feeling) but I have to look at the only lady I have ever really loved, see the lines etched on her face, the tiredness run through her bones and the beautiful smile she always manages for me, when I know deep down she is Exhausted.
LEWY BODY`S, as like any other Dementia is without a doubt the Devil Incarnate, it saps you of your energy, your drive, confidence, enthusiasm and life force until it drains you and all around you of any ounce of sensibility and reason. So what’s the answer? Do we keep the Social worker and care home manager on standby?? And hope they will be around at the right time? If I am totally honest, I don’t have an answer, but it’s a question that will need answering sooner rather than later I think.
I HATE THIS DISEASE!! I hate this disease more than I have hated anything in my life!! That’s one thing I am so certain of!!!! So maybe my respite days are coming ever closer, and if they are, there is only one proviso, I hope they have unlimited access to a computer for me!!!!!!!
A Very tired, Norrms, Elaine and family xxxxxxxxxxxxx
