Soonerfan - I was fortunate that my DH never became aggressive towards us (only towards his other caregivers, starting with angry faces, cursing and finally to pushing people). He was frustrated and frightened, losing the ability to talk and the ability to control emotions.
For most of the 7 or so years that we kept DH home, he was very childlike and passive with us. This was very different from his prior personality, which had been pretty Type A.
You end up trying different things. One week you might leave the room and wait for it to blow over. The next week you might agree with everything and be apologetic. Or you could suggest a car ride to get ice cream. Or turn on his favorite music. Or consider talking to the doctor about available medications, although they don't always work the way that you'd think with Alzheimers' patients.
As the patient loses the ability to speak and carry on conversations, you become more and more attuned to nonverbal cues and moods. It's a slow and adaptive process, with many wake-up calls (the first time he couldn't put on his seat belt, or when he tried to open his car door when the car was moving...the first time he wandered away when I was unloading groceries...the first time we realized that he was agreeing but didn't understand our words...the first time he urinated on the floor). Switching from zippers and buttons to sweatsuits. Switching from shoes that tie, to shoes with velcro, to slip-ons. Switching to an electric razor. Making the podiatrist appointment when he you discover he stopped cutting his toe-nails. Finding that he put the silverware in the garbage, or broke the lamp while trying to get it to work since he didn't recognize the switch anymore.
Discovering that going to stores, movies, family events, vacations or other places made him worse. Quiet and routines helped him to function best. Of course, this also isolated us.
This was so helpful to read. It was actually like looking in a mirror, because most of the firsts you have mentioned have already happened! Luckily he hasn't opened the car door while the car was moving, but he's not a big fan of the seat belt. This makes trips to the neurologist a little difficult since his office is 100 miles away. And I thought I was the only one who lost silverware to the garbage man! (Lost a few small trash cans, too.) Thank you so much for sharing.
As the patient loses the ability to speak and carry on conversations, you become more and more attuned to nonverbal cues and moods. It's a slow and adaptive process, with many wake-up calls (the first time he couldn't put on his seat belt, or when he tried to open his car door when the car was moving...the first time he wandered away when I was unloading groceries...the first time we realized that he was agreeing but didn't understand our words...the first time he urinated on the floor). Switching from zippers and buttons to sweatsuits. Switching from shoes that tie, to shoes with velcro, to slip-ons. Switching to an electric razor. ThisMaking the podiatrist appointment when he you discover he stopped cutting his toe-nails. Finding that he put the silverware in the garbage, or broke the lamp while trying to get it to work since he didn't recognize the switch anymore.
The stuff that your husband went through here is almost similar to the stuff that my FIL went through. I think the only difference is it might be faster with early onset. My FIL has regular onset AD and he is 90.
It is slower for him but he also has these problems. He switched to the slip-ons and gym shoes with velcro, he now has electric razor and other people have to shave him, the caregivers cut his nails... He needs to wear undergarment for incontinence but he is not aware of it thinking it is just underwear. He wandered but went to bother the neighbors instead of getting lost, and he opened the car door when the caregivers drove him to a new place (the doctor changed the office and he thought they were driving him to a strange place and refused to believe it.) He can no longer have a car drive that is more than 30 minutes.
Now he is confined in a locked unit since last summer. He does not even go outside anymore because he has stopped walking although he could use the walker with help. He really cannot walk with a cane anymore. Soon he will use a wheelchair. He is in stage 7 now. He still talks...
Like what you said, he does not suffer like people who know about the details. Back in 2007, he would be very upset that he cannot walk now.
It is the same for the people with Alzheimer's. Slower or faster.
You ask so many good questions and your feelings are so normal. The biggest lesson I learned when dealing with my grandparents (whom I adored) was that I had to allow myself to feel WHATEVER I needed to feel and to know that it was okay. I recently read a memoir that seemed to express many of the emotions I had experienced and in reading it, I felt better and had an idea of where my journey might go. If you haven't read it, you might want to try. It's the Living End: A memoir of Forgetting and Forgiving. It's a laugh and cry book which, though about Alzheimer's, mysteriously gave me hope.
Best of luck to you...
The Following User Says Thank You to Mwayne For This Useful Post: ninamarc (02-04-2012)
You didn't mention how aggressive your husband is. One rule with these people with dementia is that we never argue with them. Not that you agree with him or something, but you just cannot argue with him. Do the stuff you have to do behind his back. Cannot reason with him. He needs routines. If anything that is not going his way, he gets agitated because he does not understand.
It is hard because sometimes the person makes us angry. My FIL who is 91 has severe stage of Alzheimer's. He had always been aggressive back home. Now he is given low dose of anti-psychotic drug and antidepressant so they can help him for toileting business.
Peace, my friend. I am going through this with my husband, age 57. He is now in an advanced stage. It has been very difficult but life is good. We do the best we can, we enjoy each day, we find a way to be a support for Bill and try to avoid being a detriment (he becomes upset and agitated when he sees me but is thrilled to talk to me on the phone). We have a seventeen year old son, and we both have some serious healing to do, now. Lyn McLaurine
All the best to you and your family.
It's such a difficult thing to see, to watch happen to someone. Things are getting slowley worse for my father now. It's becomming hard for him to have a conversation without searching for words, and that makes him very frustrated. He sleeps a lot more now, and gets confused very easily. I'm taking him golfing for a weekend soon, just the two of us. Most likly the last father/son time we will ever have like this.
My heart goes out to everyone touched by this diesease. You see these people that you know so well, turn into someone else. Someone they don't even know. It's so sad. As much as it hurts me, it makes it better to talk about these things. I don't know why.
I think my husband was suffering from the disease for as early as seven to ten years ago at this point. Definitely at least for the past five years. Do enjoy the time with your dad. Honey, the memories are more for you than for him, so when it is time to slow down on the special outings, make peace with yourself. If you need a friend, I am here. Lyn
It is difficult to watch anything with this disease. But you are right Lynie. We have to look past our own grief to enjoy the moments we have left to enjoy. My Dad was diagnosed in 1998 with Vascular Dementia and died March 2010. It was a long journey. Mom was Diagnosed with Alzheimer's in 2006 and is in the late stages now. There are still more moments to enjoy with Mom. She still makes me smiles and she always has.
thank you so much for your response, lindy77. i havent heard too many stories that are like yours---my mom is currently 58 and she was diagnosed two years ago. i'm now 22. she's at the point where she cant really tie her shoes, put on her seatbelt, has bad aphasia and gets lost anywhere. your post was so beautiful it brought tears to my eyes--it's nice to know i'm not alone even though it feels like it
My father is still doing well. He's been forced to retire as he was unable to focus on his work. He has lost his driver's licence, and his doctor's say that his cognitive functions have gone down pretty substantially. But, honestly, he doesn't seem too too bad. He searches for some words sometimes, and slurs his speech slightly when he's tired. He sometimes gets rather emotional. He still remembers everything long term, but sometimes forgets short term things. He hasn't forgotten anyone; he's still in good physical health, and mostly in good spirits. He certainly isn't too far from the man that he once was...not yet. There are sure signs that he's heading there, but he's not there now.
I still have a very difficult time dealing with the whole thing, and I don't like it to consume my thoughts, or my life. I try to spend time with him as much as I can, and have my children get to be around him while they can. My life is so so busy with two small children, another on the way, a very busy career as well. There isn't enough time in the day to do what I'd like to do with him, and my family. It's been very trying, ands will only get harder, but we're all trying to make the best of the time we have. Thank you for the interest and support.
It is good to hear from you Pot and know that your Dad is doing as well as he can do.... and you as well. Yes, it is difficult to comprehend and accept all that is going on. The only way to do it is one piece at a time. From a recent book I read.... You can't eat the elephant but a piece at a time you can be successful. So take it a day at a time and deal with what is in the here and now. If you get too far ahead of yourself it's like trying to eat the elephant. For now just enjoy your Dad as much as possible... it will all pass by too quickly.
your senerio sounds a lot like my husband in the early early stages of Alzheimers. He had
a lumbar shunt put in to drain off some of the fluid from his brain. But, he did not show
any results with that procedure. However, he was put on the Exelon patch and I thought I could tell a slight difference in a couple of days. Then when the dosage was increased I again thought I saw a small change.
Everything you describe is my husband through and through.
His mother had dementia of some kind. I hope this isn't a tendency to run in families.
I read somewhere where as the early stages could run 4 to 6 years. That's why I was
wondering how your dad was a year later.
Don't want to steal your thread potfa, but I read all the pages and decided I would post. I just came from my mom and dads house and have been scouring the net for somewhere to talk. I am 25 and my dad (72) has Alzheimer's (undiagnosed) he goes for a cat scan on nov 7th so that will tell us where hes at. He seems to be going through ups and downs right now... he is very strong minded like I am so it is tough to see this start happening to him. He is VERY forgetful of short term memories and I am really just starting to accept that his is the reality I'm faced with. I thought I'd just throw a message out there to see if you guys still post on here somewhat regularly as this will be very therapeutic for me. I need to be able to be there for my mom and stay positive. I let myself cry for a bit just before this just to let it out but am very conscious a bad attitude won't get me anywhere and have felt instantly up lifted after reading everything here from you guys! Anyways, hope to hear from everyone!
McSold... we are still here and typing daily. It is difficult to grasp this diagnosis and we do wish it was not for us to deal with.... but it is and we all do the best we can. Yes, a positive attitude does help you get through each day. We all have our down moments and they are allowed but we pick ourselves up, brush ourselves off, gather our strength, lean on our friends along the way... and keep going. Sorry you had to find us but glad you did Welcome!!
Hey Everybody: When reading all of your stories it made me feel like I am no longer alone. My single father has early onset. He was diagnosed in 2006 at the age of 55 and is now 61. I am 29 and am a busy mom of a 20 month old. I work full time as does my husband. My brother is an attorney that works 80 + hours a week, so he has no time. Within the last couple of months we moved dad into a dementia care facility and he is actually thriving there. He has friends and keeps busy, which he was living a life of basic solitude except for a care giver and a few visitors. I am happy that we moved him, but feel extremely guilty that I don't get to visit him often. I try to make it at least once a week, but that doesn't always happen as the facility is a little ways from my home.
Dad is the beginning of mid stage now say the specialists. He still knows who we are. He has a very hard time doing tasks on his own.
Until reading these posts I felt like I was the only one this young going through this.
Thanks for being there!
The following user gives a hug of support to lmande12: ninamarc (10-19-2012)
Imande, Welcome to the board and glad you decided to post. Please do not feel guilty because you have done what was right for you Dad. Obviously he is doing well in his new home and able to make connections and have a busy life that fits his needs and is not just being being alone. It is good that you have found a place for him while he can adjust. Also be thankful that he is doing so well. You have a life and need to live that life. Your Dad is fine
Early onset does hit you earlier in your life than late onset but the feelings, difficulties, and stress is the same no matter the age. It makes life more complicated. Just know that there are many going through this just as you are and here we all tend to hang together to help each other through the rough times. Hope you post often... and glad something here has been helpful