I read these boards faithfully every day and have found a wealth of information from everybody. I feel it is time to to introduce myself to all.
The day my Dad stood in the drive way of his home with tears in his eyes as I was leaving after having visited with he and my mom, was the day I realized this man is completely overwhelmed and consumed with all my mom's medical conditions. That was the day I decided it was necessary for me to move back home and help out. Well, it has been four years to the day since. My mom as far as I can remember has always had health issues from Breast Cancer 3 times to a massive Gi bleed last November that she almost died from. She has had numerous hospital admissions and many of them have been ICU admissions. The past year she has been struggling with CHF. Every day is a struggle for her. All these medical set backs and hospitilizations has caused a great deal of confusion and agiation for her. Since the massive bleed episode she has never really bounced back with her cognitive abilities. Her geriactric physcologist has dx her with frontal lobe dementia. I would say she is stage 5. Although every day is challenging I would say the hardest thing I have observed is my Dad he is on a whole different level then her physically and cognitively and doesn't seem to accept the fact that she can no longer do the things she once could. She can no longer cook. She can no longer do her own check book. She can no longer hold to involved of a conversation. She barely eats. He still wants her to be able to do those things and has a tendancy to get aggravated at her and pushes her to the brink of where she becomes highly agitated and then all hell breaks loose. I have tried so many times to give him tips on how to deal with her. I guess it all comes down to he needs to have acceptance of the fact that she is not the person she used to be. The sooner he does the better it will be for us all. I know she is not the mom I always knew. I accept her for who she is now and leave it at that.. He has done so much for her through the years has always been there for her during all of her problems. It is hard to say anything to him without coming across as critical.
It is such a process that will take some time.
After reading these boards for almost a year now I wanted to introduce myself to all of you, and tell you all how very helpul everyone has been.
I am sure I will be posting often.
Welcome Pauline, I'm glad you decided to post. I did the same thing as you. I read for quite awhile before I posted. You have a set of problems that I have never had to face. My Grandma accepted my Grandpas ALZ after awhile. Of course Gram always did everything at the house anyway. I did have a problem talking her into hiring someone to do the grass and small repairs. She only agreed after Gramp did not know how to start the lawnmower. He also decided to take the garage door off after he couldn't get it open. It had an automatic opener of course. Those were some hard days to get through for her. I guess its something your Dad is not willing at this time to accept. Your job has to be a hard one.
Again, Welcome. Sorry you have to be here but its a wonderful place to come to for comfort and support.
I'm sorry to hear about your Mom..and Dad. It must be very hard for your father to see the woman he loves not respond to him the way he remembers her. Your wrote "the sooner he does the better it will be for all of us." Honey, your dad may never be able to accept that the way you want him to. He wants the woman back that he was married to. He may understand mentally why she can't do all of the things that she used to do, but emotionally he doesn't get it. He's still looking for her to come back to him as she was.
My father took care of my mom who had Alzheimers. He accepted the disease, but he still kept looking for his wife to come back to him. He mourned for her, he missed his wife and wanted her back. Your father is the same way. He wants her back the way she was. He wants his life back like he had and he can't understand why he can't have it. If she would only try a little harder he's sure she could do the stuff that she has always done.
It's not that he's being stubborn. And he truly does believe that she has been damaged by the bleed, but he just can't get away from the fact that he really really wants her back like she was. He'll even agree that he knows that she needs rehab and that there are issues...I went through this with my father. Logical to the end..he just wanted his wife back.
I hurt for you and your father and your mother. You are in a no win situation. Try to have patience with your Daddy. He doesn't mean to be wrong. In his mind he is right and in his heart he just wants her well and happy and his family back...is that too much to ask for? My prayers for all of you. You will need the patience of Job, my dear. Please come and post often..and welcome
Last edited by ibake&pray; 10-13-2008 at 08:55 AM.
I want to add my welcome Pauline and throw you a few towels.... even if you have picked up a few on your journey through the forum here. I am truly sorry you need to be here but I am glad you have decided to post. I didn't find this board until well into my journey and was so frustrated I posted the first night... it was the best thing I have done for me
I can relate to the Mom Dad battles the ensue because they don't understand the other's condition. I have lived it for several years now as well. When Dad was diagnosed with Dementia (originally they said ALZ but it turned out to be Vascular) Mom accepted and cared for him for years. She never complained. Then she declared herself depressed from caring for Dad and later we discovered she is the one with ALZ. Her depression was brought on when she realized her cognitive abilities were failing. Dad was the first to say out loud that "Mom is acting like a demented old lady". The pot calling the kettle black. Mom has lost acceptance of Dad's dementia and has no clue that she is as bad as he is now. She is unhappy and can't figure out why so she blames him. He takes it for a while and then realizes he can't please her so he gets aggitated. His aggitation feeds hers and hers feeds his and yes.....all hell breaks loose. We are going on year four.....
Mom and Dad are now in Assisted Living. None of us lived close enough nor were we able to move in without leaving hubbies, families, and jobs. We tried rotating visits and in home care but it is so difficult for one person to care for two patients. Since I was the only one with no "real" job, I ended up at Mom and Dad's more than I was home for a year. Every time I returned home some disaster struck and I was back on the road. The worst was the Mom Dad disagreements.
The other girls are right, your Dad may never accept the reality of the situation. You do have your hands full and I admire your persistence. Keep typing. Know we have towels, wine, and rocks, along with great shoulders, listening ears, and occassionally some good advice. I am sure some of your experiences will be helpful to us as well. I will keep you, your Mom, and your Dad in my thoughts and prayers.....
My, my, what a big chunk of life you have chosen to chew! I don't know how you do it, frankly. I take care of daddy, and I have a fam of my own, but when mom was hit with CHF and Alzheimers, I was 4 states away. I could not have done what you are doing - both parents. I know deb gabriel did it for a long time - and I sure don't have it in ME to take care of two.
Daddy is enough of a challenge. But before mom passed, I did fly home (4 times a year), and found her completely out of her head. Walking around in her bra and daddy's jockey shorts, swinging her cane like Conseco behind the plate, and going outside in that get-up. Fortunately, she passed three weeks later. But through it all, daddy took care of her. Till the day she died.
Then, when she was gone, he went downhill like an alpine skiier. Seriously. One day, he was fine, the next he was walking into stranger's houses thinking he was at his own house. That's how he ended up with me, here in Colorado.
And you know what? She's been gone 4 years now, and daddy does not remember her any more, but every now and again, out of the fog, he will say, "Mom. Sad." I think he means MY mom. And he never did accept that she was going to pass. Even when she did.
So, honey, don't expect dad to accept that which is. In order for him to accept it, he must recognize it for what it is - a disease. So love them both, real hard, and don't neglect yourself.
I am cyber-sending you a towel, and rocks. If you have been reading these blogs, you know why we need both. (My dad went through a 3 month period of collecting rocks from the street, the yard, the flower beds - and that's where we get our supply as it seems we now have 14 tons of rocks all over the place.)
Welcome, Polina. Post often. It will save your sanity. Really.
What each and everyone of you said in your post is so very true. It is amazing to me how much all of our lives are lived the same with this disease. Some days I feel I live and breathe Alzheimers disease. Somedays I feel Alzheimers is the forefront of my life. Somedays I wish it could be different. Most days I say: It is what it is. This to shall come to pass it won't be forever. I bake & pray you hit the nail right on the head when you said: He wants the woman back that he was married to. Dad often says: This is not my Nelsie. (Nelsie is her nickname he has always called her). I respond back to him by telling him No dad it 's not! It's the disease!! Like you said mentally he knows it is, but, emotionally he doesn't get it. I guess when you have been married for 59 years its hard to accept this disease took your wife away.
D Gabriel what you said about how they feed off each other is exactly what happens with mom and dad. If mom is having a bad day then dad is having a bad day. She sets the tone in the house. Its almost like the dominoe effect. Her behavior affects him. His and her behavior affect me.
Good advice Skimps when you say don't neglect yourself! I try very hard to keep up the one thing I still love and that is running. I have been an avid runner since I was forty. So every night after work no matter what I come home and change into my running clothes and go running for an hour that is my out to all of this.
I will keep a towel and some rocks on hand. Mostly, I will come back often write and listen to what all you wonderful woman have to say!! I feel all the richer for having taken the important step to reach out and introduce myself to all you great people.
Do keep up your running Pauine. Nothing like a good work out to release stress. That's what my bike has done for me. I get my morning chores done early, call Mom when I know she is awake, then hit the roads for my ride. The rest can wait until I return. It is what I do for me and I have learned that taking care of yourself is of utmost importance. As the doctor told me... you can't do anybody any good if you are not healthy. He's a wise man.
My Mom definitely sets the tone for the entire family. She gives new meaning to the old saying..... If Mom's not happy nobody's happy. Poor Dad!!! He definitely take a back seat to Mom's moods unless he finally get annoyed with her. Then he's front and center. They have been married for 58 year and refuse to be separated.... even on the bad days.
Welcome to the Board, Pauline. I had an Aunt Pauline - I love the name. When my dad and his 4 siblings were orphained in their early childhood, she took all of them in, along with her own 2 children. She was a Saint!
Pauline, you too are a caregiver. It is hard, but you have the right attitude, and you will get through it. Just remember that the time may come when your parents need to be in a facility. Don't rule it out; it is not punishing them but finding them the 24/7 help they need.
It's funny because for a big part of my life I always hated my name. I always wanted a more common name like Karen Linda or whatever. It wasn't until I got way into my adult life that I grew to like it mostly because it was not a common name. I have come to realize it is a unique name.
I remember one night about a year ago I was in the bathroom cleaning up a mess my mom had made and didn't even know she had done it. When out of frustration I blurted out to my dad this is nursing home material. I know it was harsh words, but I guess I was so frustrated from cleaning up so many bathroom messes. My Dad responded back to me with this look in his eyes I will never forget the rest of my life. It will never happen as long as I am around! (meaning him). So I have never broached the subject again. There is a bond between them that no matter what he will be there fo her. I still think like you said Martha there will come a day when He will have to make that decision.
If left to Mom and Dad that day would have never come Pauline. The stumbling block was and is Mom. She had to put my grandmother in a nursing home as her ALZ progressed. She also cared for Dad for years. She understood the stress and strains and even bought herself LTC insurance. Her hope was to keep Dad at home and if she needed care then she would go to a facility and have the financial means to do so. That was then.....
After the start of her ALZ she was still determined to keep Dad at home. She did a crafty job of hidding her cognitive inabilities under the guise of depression. When she was finally diagnosed she refused inhome help. She fired home health, she convinced a psycologist that was unfamiliar with ALZ that if we would just go away she would be ok. So we were told to stay away. She then ran off the angel sitter we had. Despite her antics she and Dad would argue, she would melt down, and call crying. Then things would go wrong at home, it was always Dad's fault, and I was always making emergency drives home.
That final day, after she had slugged the sitter twice, she had no choice except which facility she would go to. We found an AL where she and Dad could take their own furniture to fill the apartment and they live together. To save face, her excuse for going was that Dad did nothing to help her at home and that was why they had to move. She actually agreed and signed the papers herself. That was then.....
All went well for a couple months. Then winter hit and she had the flu three times, a bout with pneumonia, a nasty fall, and a couple of UTIs. She never really recovered back to her previous cognitive level. It was then she decided she was ok and wanted to take Dad back home to die. She hates where she is and if we will just let her and Dad go home they will be fine. Each episode is punctuated with irrational melt downs. Dad, the one we were worried about, has adjusted well and actually likes his new place better than being at the home he now doesn't remember. That is the now..
My only regret is that we waited so long. Only by the grace of God we escaped those years at home with total disaster. When I look back at some of the things that happened I shiver. They almost burned the house down plugging the vacumn into a backup battery supply, Mom broke her arm and we still are not sure of the details, Dad laid ambush for a imaginary enemy that was a neighbor, Dad ended up in the hospital with an overdose of Xanax, frequent medication mistakes, burned pots, broken windows, Dad wandered away, and that's just a few episodes. Mom was so determined and Dad covered for her. Mom had all the excuses and denial. Dad was truly clueless. I realize now that Mom was not happy then.... and she's not happy now. It is not where she is that is the problem. It is the confusion in her head that makes her unhappy. At least now I know they are safe and well cared for. Help is seconds away rather than hours away. When I look back... we didn't have a choice... we just delayed the necsesary.
Each case is different. In my case we didn't have a choice. It was not my wish or theirs but with the help of these great ladies here I saw the reality of my situation and that helped a LOT. I just wish I had realized the reality sooner..... I have seen those eyes your Dad gave you in my Mom. It was not easy to step up and be the adult in the situation. But there will come a time when you may have to do that. Just keep your options open
Ah but Pauline, you will be the one that will be maing that decision. He will not have the emotion stability nor the maturity to handle it. My father had AAA and vascular dementia. Mom was the AZ one. So Deb and I had alot in common. I fought it from afar. My folks wouldn't move to VA. and I couldn't move back to Minnesota. I was an only child and fighting a battle with not only my dad and mom , but with the social workers and the nursing staff and the world in general. When it came time for Mom to be moved into somewhere where she would recieve more care than Daddy could give her I HAD TO MAKE THAT DECISION. Dad couldn't and wouldn't do it. It was the hardest thing that I had ever done. I kept up a cheerful happy face. When I got back to the hotel I sobbed for two hours straight.
Unfortunately you have to be the cheerleader and the bad person. So keep your chin up and your cheerleader skirt on. And boy does it get hard to put that skirt on some days!
I am a member of this board also......I dont have as many words of wisdom as the other lovely ladies here....but my grandma suffers from dementia, so I am very close to her illness and come here for advice and comfort.
Just wanted to welcome you aboard also....you are in great hands here!