In the light you and others have suffered dramatically for so long, I hang up my whimpering badge. Maybe I'll have to repin it later, but for now....NOT. God bless you.
Zibby - years ago I learned that trauma affects people differently. Two people can have the same thing happen - one is dramatically traumatized while the other will only be minimally affected. Dealing with this disease is no different. It is possible that just like some are born parents (comes easily, loads of patience and wisdom, etc.) others are may be born caregivers. Some of us have incredible empathy, love, patience, etc. while others of us have to struggle to not get angry and let it overwhelm us. I fit the latter.
Zibby, Do not minimize the effect this is having on you. It is what it is for you. You have been dealing with this for years. Even though it may seem routine because it has been going on so long, it is taking an emotional and physical toll on you. This place is to come to and 'whimper'. Where else can you do it and not get yelled at, lectured, criticized, etc? Where else can you do it, be validated and get the encouragement to go on another day?
JudithKB, You refer to a downward turn (in your husband's condition) as a result of a recent move. We may need to move soon and I'm not looking forward to it. I moved my parents / sold their house a couple of years ago and my DH did not do well during that time. Didn't want to help with any of it . . . then had a change of mind and decided to help but on his terms which was more hindrance than help. Huge headache! He used to be very helpful when assisting family and friends with moves. Not anymore and I realized that his capacity for change of any kind is greatly reduced. So now we are facing a likely move sometime and I am open to any suggestions on how to manage a move with an as yet undiagnosed hubby (who does best when things are very routine). What did you do that went well when moving and what would you have done differently now that you can look back? (Not moving isn't an option as we live in a family townhouse complex and bylaws require us to downsize when our daughter moves away later this year. Mind you, a smaller unit may not be available for awhile. I don't like the uncertainty of not knowing when we'll have to move and will be glad to have a smaller unit to look after etc. It's just the actual transition of moving that worries me).
Yes, similar events affect people differently. Charles Manson and Richard Pryor had similar upbringings, living in brothels with their prostitute mothers. One became a monster and the other a famous performer.
Yes, Charlotte & PrisR, I can see similar situations affecting people differently because of personalities, backgrounds, etc. "Even though it may seem routine because it has been going on so long, it is taking an emotional and physical toll on you." Been thinking about this this afternoon. I think you may be onto something! Going to do some journaling about it.
I would guess the number of years you count would depend on if you count when you noticed the AZ or from the time of DX. I have been dealing with DH"S dementia for 7 years but could not get a DX until a year ago. By the time a DX was made he qualified for a NH and was in stage 5. He has really declined this year.
When I started this thread, I had no idea how long my DH would live. More importantly, I suppose, I didn't know how he would die. Frankly, I couldn't imagine the horror of him actually dying. The thought of him leaving this world - my world - crushed my soul in a way that no other event in my life could. I am posting now because I want those of you who are following a similar path can know something very critical: You WILL make it through this experience - a kind of living hell - and the death of your loved one will not kill you. I want you to know that every effort you are making IS worth it! I urge you to take the time, the windows of opportunity, and make the most of them. Tell your loved one how much you love them - even if you think they don't understand, YOU DO and you will remember telling them how much you love them.
In all of the chaos, soul searching, wondering why and what you might have done to bring this on you, and whatever else you may be thinking and feeling right at this moment, please remember you are not alone, love yourself, hold yourself, know you are being held by a God who loves you more than He loved His own life, and trust that, when the time comes, you will be able to finish this journey and will one day know that your loved one has been well and truly loved and is no longer suffering. Try to hold onto this light at the end of the tunnel. There is an end to the tunnel, an end to the darkness. Hold on and give yourself a break ... take a few minutes to do something you really enjoy and then do something you really enjoy with your loved one. Even if you have to wrap your loved one's arms around you to get a hug, get that hug. When your loved one says "I love you," don't worry about whether he or she really really knows what the words mean. Take in the love and let it fuel your life.
Sharan, first of all please accept my sympathy for the loss of your DH. You had a very special love. And also thank you for your honest expression of what this awful journey is like for all of us, and for your sincere words of encouragement to us, even as you faced the end of the journey. Please follow your own advice and take care of yourself, and continue to stay in touch with us. Much love to you!
There are a couple of people on my husband's floor that are in final stages. One has been at the facility 10 years. Okay, that gave me a bit of a heart attack. Sorry, but I don't know if I could last another 10 years for him. I know I would not be willing to put my life on hold for another 10 years. The other person has only been there a couple of years. His wife was able to keep him home and take care of him for quite a while.