Not signed in (Sign In)

Vanilla 1.1.2 is a product of Lussumo. More Information: Documentation, Community Support.

    • CommentAuthorMBJ
    • CommentTime4 days ago
     
    I am so thankful to have found this site. My husband, Jerry, was diagnosed 6 years ago at 65 and I was 60.
    He is in late stage 5 mentally but is in perfect physical health. I take him to the gym 3 times a week to work with a trainer. His only physical issue is a pancreatic absorption problem and he looses weight easily so I have to make sure he gets around 4000 calories a day. (Starting to hate my kitchen! Lol)
    He is not able to select his clothes, bathe or get food without my help and spends most of the day doing adult coloring books which have been a salvation for me as well. My biggest struggle is his desire to constantly change clothes thru out the day into odd outfits and putting things in odd places. Much of my day is spent going on hunts! We are lucky to have a few friends that invite us out several times a month. Even though Jerry doesn't speak much, I know he is enjoying the time around other people. I am so thankful as so many friends have drifted away.
    I see so many people on here with struggles as well as solutions. I am also inspired by your concern for one another.
    • CommentAuthorCO2*
    • CommentTime4 days ago
     
    MBJ, I want to take the opportunity to welcome you and this site will be a lifeline for you as it was to me and so many others. You r indeed fortunate to still have some friends as most of ours had gone. It sounds like what you are doing now is working for you. When it is no longer working for you, you will need to change. For me that was challenging for as soon as I got a new normal in place it was time to change because of his decline. Always remember to care for yourself. It is vital that you try to have some semblance of a life for yourself during this time--if it means getting help so you can leave and do something that you enjoy. I was able to do that until he could,no longer stay alone in the house. Each person's situation is different so what worked for one person may not work for another. May God bless you and remember we are here for you.
    • CommentAuthorRona
    • CommentTime4 days ago
     
    Welcome MJB this site was and is a salvation for me everyone here understands as they are living or have lived it. I can so relate to what you are saying I felt I use to spend my days just walking around picking up things and trying to keep some sort of order. Lisa use to continually go through her drawers and change clothes no matter how many times I tried to organize them it was to no avail. I finally realized what did it matter? What helped me I finally got a home care worker, she actually lived in The neighbourhood and became a good friend. It started with 4 hours one day a week and turned into her spending a couple of days with Lisa every few weeks so I could get some respite time. They would have fun together, she would go through Her clothes with Lisa organize them, organize the linen closet together etc. Worked well and she taught me don't sweat it if she is happy it is good.

    She has been in care now for 7 months today, her room is usually a disaster but I don't worry about it or try to clean it up I just enjoy the time we have together. The aides take care of it the best they can sometimes she is in odd outfits but so what.

    So welcome take care of yourself good you have friends we did too don't be afraid to rely on them if they are there they want to help but many just do not know what to do. You have found a safe place here come often no judgement just support.
    •  
      CommentAuthorCharlotte
    • CommentTime4 days ago
     
    Welcome MBJ. Yes, it is so hard when they are physically healthy yet their brain is not. This site and all of us will be there. I hope you stay. So many post once and we never hear from them again. I think I can speak for many here we worry about those and hope they have found some good support elsewhere.

    My husband is 69 - will be 9 years next month since diagnosis mainly based on neuropsych testing and family history. I am 64. My husband attends day care 3 times a week. At first Aging and Long Term Care paid for it then the VA took over. I so look forward to those 3 days.
    • CommentAuthorMBJ
    • CommentTime4 days ago
     
    Thank you all so much for your warm words. I know deep down how difficult this is going to be. I am so fortunate that I have such a dear husband. His demeanor is still so sweet. However, I can tell it is like looking in a mirror for him. If I get stressed, so does he. So I pray and try so hard to not loose control and have patience. My goal is to keep Jerry physically strong so that I can keep him home as long as possible. I try to find grace in being a caregiver but it is indeed a struggle. But I realize it could be so worse if I had to deal with the anger so many do.
    Sorry about the long post, it just feels so good to actually vent! Thank you all for being here. I can sense what a help you are to each other.
    • CommentAuthorMBJ
    • CommentTime4 days ago
     
    Charlotte, I am happy you have found some good care for your husband. I know those are three precious days for you!
    • CommentAuthorcassie*
    • CommentTime4 days ago
     
    MBJ, you are a wise woman to know that you are a mirror reflection to your husband. It does make it even more difficult for you,never being able to react or be angry but you seem to be doing really well. We have all lost our patience at times and the guilt can be dreadful but do remember that you are only human and just go forward. I wish you all the best for the long road ahead and don't forget that there will also be some happy moments so grab them whenever you can.
    All the best.
    • CommentAuthorWolf
    • CommentTime3 days ago
     
    Welcome MBJ. That wasn't a long post though.
  1.  
    Welcome, MBJ. This site has been a lifeline for me, and I'm sure it will be for you, too. Much, much wisdom and support here.
    • CommentAuthorLindylou
    • CommentTime2 days ago
     
    Welcome MBJ. I do hope you find support here that will help you. I know I have in the 15 months I have been participating in this message board. You are so right on realizing you are a mirror reflection to your husband. I never thought to phrase it that way, but I have always called my partner my best teacher. She is the one who taught me not to be angry by getting upset herself when I did, choosing to run away from home. I, of course would have to run away with her. I appreciate your imagery and wisdom. Not that you won't get upset at times. We all do. Anyway, look forward to hearing more from you and helping in anyway that I can, and learning from you as well.
    • CommentAuthorSass
    • CommentTime13 hours ago
     
    MBJ, welcome to this site. You will find lots of support here as others have posted. This site has been a true lifeline for me although I don't post as often as others. I do read it a great deal and gain insight and wisdom from others and their circumstances, ways of dealing with things or just relate when they get on here to vent. This is truly a safe haven where people care about you and know what you are going through. Welcome