What it is really like to have stage 4 Alzheimer's
I haven't been on here for awhile. I had a terrible flu that was complicated by pneumonia. My doctor put me on Tama-Flu. I was hospitalized with seizures, difficulty speaking,, hallucinations and tremors. The shout that I had a stroke. I take medication 3x a day for Parkinson's but the doctors never related the connection. They simply discharged me sicker then ever. Fortunately, I have a great neurologist, he called us at 5:30:am and said he wanted to see me in his office immediately that morning no matter what his schedule. When we went in he had a video consult with The Cleveland Clinic's Parkinson's and Alzheimer's specialist, they confirmed that I had an anaphylactic reaction to TamaFlu due to my Parkinson's medication. It will take 2-4 weeks to leave my system.
In the meantime, I was always petite but now I am down to 100 lbs. It's seems I just forget to eat. Sleep after midnight seems almost impossible. I just need about 5 hours and I am wide awake. I do take my medication on time but find I am tired of taking medication.
The other day my Amazon Prime video, which is my only source of entertainment was shut down for a day. I was so mad that I had a full blown tantrum. Which is very unlike me as I consider myself not only a Catholic but a spiritual stoic. I have been practicing meditation for over 28 years and yet on that day I was out of possession of my soul.
I am also incontinent of bladder and bowel at night. I due wear protection but if I wake up and the sheets are wet then we have to change everything on our king size bed which is complete humiliating. My husband is very kind but I feel disgusting.
My self awareness is starting to dissolve. It feels like my brain is being torn in half. One side reasonable the other side with simple mistakes, tantrums headaches, deep brain fog, trouble speaking, and difficulty writing which is why I haven't been on here for awhile. Since it is 12:22 am I felt very reasonable and thought I would share my thoughts.
On a more positive note my husband and I are now actively working for as volunteers of course for the Alzheimer's Association. We met with our local state representative, next we were asked to go to Columbus, Ohio for Alzheimer's Awareness Day and meet with the legislation. In June we will represent Ohio in Washington DC at Alzheimer's Awareness Event where we meet with my congressmen and women to share our story. There is even a gala to attend. Of course I am wearing a simple black gown and my husband will have a black bow tie. The key to being successful is taking it slow. Watching that I do not become over fatigued which is a red zone for me.
I am so grateful to have a place to share my story. Your experience, strength and hope maybe completely different than mine. Brains are the one organ that is unique in that way. Your thoughts are not my thoughts. I hope only to provide a glimpse of my mind to comfort you in that I do have joy with my children and grandchildren , I do find hope in church, I love my few friends with all of my heart and my husband is my soulmate. So if you haven't gotten bored yet...you found out this is a love story after all. This is a picture of my oldest daughter and her husband. I choose her because she is a lifesaver by calling me everyday.
Hi
thank you for sharing so openly and honestly with us. I am so glad you have our community to do this with. Thank goodness for your neurologist! I can't even imagine how scary this experience was for you. I can hear how difficult all of this is for you. You explain it so well by saying your brain is being torn apart, and how this is a constant battle that you are fighting. I am so glad to hear of all the great advocating you and your husband are doing. That must feel good being a part of spreading awareness. Your story is encouraging, I am so happy you have so much love in your life. Your daughter is beautiful, so glad you have her. Jill (Team Member) 
Hi
, I was going to come and leave a note checking on you! I'm so sorry that you had such a hard time and stressful reaction to the meds. I'm glad your neurologist got everything straightened out, even if it will take a while to clear your system.
I know it gets wearisome taking al the medications, but it is so important to stay on top of it, and also important to eat. Maybe your husband can help you do a little meal planning so you only have to heat things up at mealtime.
I'm so excited that you are doing advocacy work, it is so important to educate legislators, especially in these trying times. I'm also happy that your husband is joining you! How has he been doing? I'm hoping he is recuperating well from his surgery, and his treatment.
Thank you for sharing the photo of your lovely daughter. I can see you in her sweet smile! - So glad to hear from you! - Warmly, Donna (Team Member)I just realized that your emails have been going to my junk mail! I have now moved them to my in box.
Tomorrow a new nurse is coming from my palliative care team, which I don't like them because they never answer the phone but my home health nurse who is super kind(Carissa) is going to be there as well so I am not so afraid. I have become very paranoid of strangers since I was in the hospital. My home health agency is referring me to a hospice agency on Monday, which my husband said is a good thing because I will get more care. It made me really sad at first but now I just forgot to be sad if that makes sense. I have become really obsessed with brown sugar expresso shaken oatmilk drinks from Dunkin Donuts ever since my daughter bought me one. I could drink one every day but of course I don't because I don't get to go there except for a treat! I try to eat a little each day but it's like I just forget to eat. It's hard to explain. I will try harder to remember. You are so dear to think of me and I think of you too; @DonnaFAI am glad Carissa will be there and this will provide you with some comfort. It sounds like your health agency is doing what they can to help support you and you will get more care. Brown sugar espresso drinks sound delicious, I will have to try that one day. I am hoping with the additional care you will be receiving, they will be able to help with meal planning for you. Please keep us posted with how you are doing. Jill (Team Member) , that's okay, that happens sometimes with messages. Technology can be both a blessing and a curse.
I can understand just forgetting - letting go - of the worry and stress. It is kind of healthier.
It's good to have a treat you enjoy! Talk to your husband, or maybe one of your team and ask if they can help you do some meal prep, so that you have some meals you can just heat and eat. You could also try a meal prep service - the one from Martha Stewart (Marley Spoon) looks amazing. Maybe try setting alarms for mealtimes. Keep in touch <3 - Warmly, Donna (Team Member)
Welp...no one showed up except my Eucharist Minister. So I did have communion. The nurses from my palliative care agency over-booked and neglected to tell me. So I told Carissa it was a no go. They left me waiting for 2 hours waiting for them to call me back and they were not very contrite. I have been a nurse with a PhD for 43 years and I would never act like that to a patient. So when my insurance company called this afternoon I made a formal complaint against the company. Which you might be worried that would leave me with lack of coverage but I already have a different home health agency that provides all of my care, my PCP can order my meds and my home health agency has referred me to a lovely hospice agency starting Monday. So I had a plan B..I know that hospice sounds scary and I did cry 2x. But I now am over that part. I raised 5 strong, independent and loving children. My husband is a wonderful caregiver but I think he is starting to wear out. I don't ask him to bring me anything like food or drinks like I use to because I don't want to bother him. He needs a break. I need a break from all of the doctors and regime of medications. I want to do a couple of things. I want to go to Columbus and Washington DC to represent The Alzheimer's Association and do their advocacy work which will bring me to June 10, then on June 15 I want to go to Florida with my family for vacation, I have already made monthly dates with my mom so I can build up that relationship and I want to continue to grow in my faith. Then some beautiful summer or fall day perhaps I will be ready to go. I hope it's not winter as I do hate the winter so much and I don't want to ruin anyone's holiday. Take good care...I will write much more
(((Hugs)))
I agree that was terribly unprofessional, but I am glad to hear that you have already established a plan B to take care of all the details.
I understand that you both need a break. You have both had so many things going on, and it would be wonderful if things quiet down enough for you to regroup together - especially as you move into your new advocacy efforts!
It is good that you have arranged for the next steps, and can have peace as things progress. It's also good that you have made a personal peace. But I think you have so much more to say, both here and in your advocacy work. And I look forward to many more chats, and hearing about your advocacy efforts. - Warmly, Donna (Team Member)
