I feel like I have a dirty little secret. My husband and I have an appointment to have a round of tests done to tell if indeed he does have early onset Alzheimer/dementia or what. I see evidence every day that indicates to me that he has something going on with his brain. It is waiting for the test day that is wearing me out. I think that finally I have pushed enough to get something done. The not knowing what is really going on is excruciating.
I really have to be careful who I discuss this with. I tried to say something to my oldest daughter over Christmas break. That blew up in my face. She thought that I was blaming Dad, being negative, and looking for pity. To be honest, I just want someone else to acknowledge the huge change that I see in my husband. Also, I have tried to put the best light on my husband.
There are times when he gets so verbally abusive. I call him on it, and he will deny it or say that I am just as bad. He has said, "You just want me put away." I just want to know what is going on!!! Thanks for letting me vent.
(((hugs))) Seems your problem is common - family and friends not wanting to acknowledge something is wrong. They want to stay in denial. And yes, dementia is still a hidden secret despite celebrities coming out and talking about it. But, it is very slowly getting better, not being such a 'disgrace' to have dementia. That is why places like here is so good because we know we are not alone and can talk openly about what is going on without repercussions.
I hope the test can give you more guidance. Is he having the neuropsych testing, MRI, PET, CT? Have they ruled out other problems that are treatable?
Farmwife1, I am glad you are getting the testing. I had my head in the sand during the early stages. He became more and more unreasonable and negative and then nasty, argumentative and abusive. The first time he saw a nurologist was the day I called the cops after he came at my daughter and I with a big pry bar. He was trying to get into my car using the wrong key and first tried to break the car window with the pry bar and then came at us. The cop calmed him and then suggested he go to the hospital for testing. Amazingly, he agreed.
There were many times when he would grab me by the shoulders or the neck and shake me as hard as he could. Having the nurologist on board got us the meds that helped the behaviors.
You may have to avoid bringing up the subject until you get a dx unless someone else brings it up. In my wife's case one of her friends said "It's about time (we got a dx)" when we informed her of my wife's dx. She knew something was wrong with my wife for years but didn't bring it up with me. My wife's family had been worried about her for years. But I guess the are the exception.
Even with a diagnosis my DH's family were still in denial. Lucky for me our DDs were at home and also knew something was wrong with DH. His family still makes excuses and tries to tell me how to deal with things. They only see him a few times a month. I just quit discussing his care and what stage he is in. I hope you get a diagnosis soon. We are all here to help when you need to vent or ask questions. I have learned a lot here.
Yes this is a difficult situation. I asked if my husband's friends noticed anything different about his memory..they all lied...later admitted to it... I learned not to waste time with those who did not understand the disease nor tried to become educated..I didn't and still don't suffer fools very well. When you go for the testing, I am sure others may have suggested this, but if they haven't, don't try to make your husband seem better to the doctors than he is. If grooming is an issue, they need to know this, verbal abuse etc...let your husband do all the talking when the doctors ask him questions. Let him answer. Say nothing...later you can talk to the doctors about things said that are in error. And as to friends, don't bother trying to get them to understand what you are dealing with. Only a rare few will get it and be supportive. The rest who don't know beans about it will " have all the answers". I would find a support group locally where you can gain information from others. In our area we have a great Alz Assn support group..the folks are a mix of situations..As to dealing with issues related to a spouse, this is the best place to come. In the mean time, jot down anything you think may be helpful fo the doctor as well as any questions you may have regarding this disease. There is much you will need to learn about the disease as well as how to protect your assets, finding out what kind of in home or NH support may be available in your area and so much more. Be sure to take care of yourself and one thing all of us here have learned and that is when you need help Ask for it! If someone offers help take them up on it as you will need some relief.
Thank you so much everyone for your comments. Today was a good day mood and behavior wise. He did just little things that I noted but really don't remember. I have to remain calm and level, so I have trained myself not to react and not to remember. I will use this board especially during my waiting time for the testing to be done. Thank you for the advise about the testing Mimi.
I am an emotional eater and I noticed that I do pretty well on his good days. Lately there have been more "bad days" In order to keep the general atmosphere calm, I eat, eat, eat. My husband sleeps a lot and that helps me and hurts me all at the same time. I am away from his verbal abuse, but lonely because I have so much time to myself in the evening. I think that really it is the emotional relief and that I don't know how to emotionally handle the let down or respite.
Farmwife 1, I can relate to your emotional eating. My husband has been placed for 16 months and since he left I have dropped about 15 pounds. I know I ate my emotions. It is such an easy thing to do. Much better to,share your feelings here with people who,truly get it. My husband was not abusive as he declined but I found that his emotional neediness for me was absolutely suffocating. It felt like the life was being sucked out of me. The loneliness can be overwhelming especially for me during the long cold winter. I try to keep busy but the loneliness never seems to leave completely even though he is placed. Feel free to email me. God bless.
Yes, until it becomes quite severe, many people (usually friends/family who are not dealing with it on a day to day basis,) have this sensitivity about the "stigma" of Alzheimer's, and may feel like admitting to something being wrong is somehow a betrayal of the person.
I found that at the beginning of this journey two years ago I desperately craved validation and rarely ever received it. Still today my sister and my DHs son can not will not validate what the obvious reality is. I didn't even receive validation from the neurologist. I am now finally confident that the reality of what I deal with every day is my reality and it doesn't matter what everyone else perceives. Farmwife1 beware of the neurologist. Hopefully you have an outstanding compassionate doctor who cares about what your observations and experiences are on a daily basis. Don't doubt yourself. Stand up for your reality.
I understand what you're saying. I've decided that I don't need/want sympathy or pity. I just want acceptance & acknowledgment & a little understanding. Dan's "condition" is exactly what I say it is, I'm not making things up, & if someone refuses to acknowledge it, then they can kiss my ample butt! Which, by the way, is becoming ampler - I totally understand the emotional eating. I've always been an emotional overeater. It's my go to comfort & immediate gratification. Unfortunately, the results last a long time on that butt, hips, tummy, etc.!
Mim, I agree with your post. I could have written it. I want his family to acknowledge it. I do not want to hear he did great with them. He tells his mom he sleeps all night. I do not make it up. He gets up and walks around at night. He sits up in the bed and looks around, all night long. The thing is he probably didn't understand the question "do you sleep well at night". He says yes to any question. He tells me I make things up and lie about things. That he doesn't move my clothes or try to put them on. I know why he says these things. I need others to acknowledge he does these things so I know I am ok. Does that make sense? When I am upset or stressed, I lose weight. Then on top of losing for that reason, I have so much more to do around here that he use to do. I have lost 10 lbs. I didn't have it to lose.
Like jackiem29 I am a stress non eater. Since placement I have lost 50 lbs. About 20 was ago but the next 30 has done nothing but having to listen to my DD and DS and the doctor fuss about it. I grew up in a family of nine kids. I just do not like to eat by myself. When I go out with family I am thrilled to have someone to talk to, so I talk. I usually bring most of the meal home with me and promise that I will eat it later. Except for my aching back I feel fine. I also do not like to spend money on new clothes so I still wear my big girl clothes and that causes so many comments. I would never mention someones weight. Last year when I attended my brothers funeral five relatives that had not seen me in long time offered me money to buy groceries. Fortunately money is not an issue yet. That was funny to me! Where were they during all my caregiving years?? Good friends, maybe I am the one with mental issues! What do you think? On the positive side cutting my toenails is much easier now! (lol).
Alim - I tend to try taking them in vs buying. Like you I hate to buy clothes.
Since I have put on a lot of weight, especially the first 2 years after diagnosis, guess I am a stress eater. I actually do not think I eat any different than before but since I am not working and active, I should be eating less.
Charlotte I admire your alteration savy. My alteration expertise consists of using a safety pin! Guess I should have paid more attention in home economics class way back in 1961! DD an DIL buy me normal fitting clothes as gifts. They are usually not my style but I wear them when I go out to eat with them. Don't want to embarrass the young folks! I just feel like after all the years of ALZ caregiving I have earned the freedom to wear my floppy clothes around the house and out to the store. At 67, I'm way to old for those tight fitting jeans! Caregivers have earned freedom. I'm am all about comfort! Take care, Charlotte. Sending you a big ((Hug)).
I do nothing fancy, usually sew up the waist or sew elastic on to make them tighter. Maybe make some darts. I don't have a sewing machine so do it by hand. I never took Home Ec - that was a girlie class! Shortly after we were married I needed a nice dress for his parents 25th. I bought a mail order sewing machine and made one out of a crape material. It was the first thing I ever had sewn other than buttons and seams by hand. It actually came out nice.
The neighborhood lady was "commenting" on how baggy my pants were - combo 20 pound weight loss and old age - so I saw some camouflage stretch denim at Wal-Mart for $5 each, so bought 2 pair. She was not fond of the color but said they looked better. I must admit they felt better - the others were to the point they kept falling down!
Talking To Others About Alzheimers...okay. Here goes. When he was first diagnosed, it was the big SECRET! I didn't want him to know the A word, so I avoided anyone except close friends and family. It took a year before I could talk about it to others beyond my tight little circle.
Now that he is placed and all awareness gone, I feel a need to talk to anyone about it. I feel like I am spreading awareness and knowledge . Surprisingly, whomever I speak to ( casual acquaintance, hair stylists, etc) know someone with disease and are very interested in info and express compassion.