@A myALZteam Member
I agree with you. It is so helpful for us who are still caregivers when our friends who are ahead of us share their experiences. There are so many who have been a true blessing to me. On here we aren't just friends, we become family thrown together by this horrible disease. In many ways we are closer that even immediate family because we have to accept it and deal with it. I am thankful for those that stay and keep in touch. We grieve for the loss of those connections when they are gone too. I know it is important for them to move forward and for some we may be a reminder of bad times,but we still miss them and wonder how they are doing.
My husband's primary care dr evaluation and says he is late stage. I don't know which scale she is going. I would rate him as level 6. People who are not around him ofter, even our girls, Will say he seems to be doing well. They have this idea that people with Alz just lose their mind and are like zombies I think. They don't accept that it's a long slow process that takes them away a little each day. Those of us who are or have been caregivers live it everyday. One positive thing that comes from the journey is we pay more attention to the little blessings in life and live in the moment with those we love. It builds patience wh never thought we could have, and it has shown me how much I need God. I couldn't do this without Him.

Mentioned Users

A myALZte...

@A myALZteam Member. I know this is all very confusing. I hope you gained some insight. Just look at the Alzheimer.org 7 stages and put your loved one in the stage he seems to fit the best. If you are wondering about the last stage for hospice care, just give them a call and talk to them and they will answer your questions and come out to do a free evaluation of where he is.

Mentioned Users

A myALZte...

Anna056, It is so hard for others to understand what we go through day after day. Dealing with it for a few hours does not give the whole picture. Those that come are a, probably, welcome distraction. It keeps them from doing things that are disruptive and time consuming. When we are with them alone we are the focus of their world. Even now I know I may have to leave immediately. Or I may have to either stop or try to continue with someone at my shoulder. It is amazing so many last so long as a caregiver. I have to believe that for many of us it is our only option. Memory care is so expensive. Having respite relief can also run into a lot of money. I know my wife is nearing or at the severe stage. I have no idea how long she will continue. Physically she is in pretty good shape but I am seeing problems with her walking. My hearing is compromised so I can rarely hear her or understand her. She continues to have trouble swallowing pills. I have tried crushing the pills I can but had to give that up as she didn't like any of the things I would add it to. I know the day is coming when I will not be able to get them down her. I have developed more patience but still sometimes lose it. She tried letting our indoor cats out the sliding glass door. Now I have to keep it closed with a device. She is entering palliative care which I hope will help. We have our first appointment later this month. I do hope you can stay strong.

Thanks Muggsy for sharing your experiences on trying to understand what stage our LO is in. I agree none are cut and dried, overlap and seem to be fluid at times. Just feel like others see John as more progressed than I do. But they of course have a brief time with him. I do see more difficulty with John finding words and much of his speech is repetitive phrases that sound appropriate but are disconnected from the context. Much more limited to ritual or habit behaviors, doesn't factor in the current situation. One blessing he's started saying "today was a good day" at night which helps my heart. Every positive moment a blessing. Sending support. Take care.

@A myALZteam Member
Sometimes it is hard to tell the stage, even for the specialist. This disease affects each one differently depending on what part of the brain it is working on at that time. It's a monster. Today my husband says he feels OK but I can tell he is having a hard day. He seems weaker although he still walks to his shop a few times a day. He is not eating as much or as often, says he is not hungry. There is a weather front coming through with possible rain tomorrow and sometimes that makes he more confused. He is not incontinent yet but goes to bathroom often. He still talks in sentences but has trouble completing them. Today he is not even playing solitaire on his phone. He seems to be fading more and he is so discouraged with how he feels. Last night, we were watching an old movie and he couldnt follow much of it or distinguish between the actors. It is one which we have seen several times and that he liked. I asked him if he wants to do things that i know he has liked, like go riding and go on a picnic tomorrow and he said whatever i want to do
Before now, he would get excited about it. I feel like he is rapidly losing ground. Hang in there.

Mentioned Users

A myALZte...