I've asked my DH how he feels about losing his memory, etc. He tells me that he doesn't particularly like it but also that he doesn't want to think about it at all and doesn't really want to know any details about lhis disease. I, however, would really be interested in how my actions and discussions affect my DH, what he hears when I say something, what it feels like to know that you're missing so much. Anyone else out there have these questions?
No, I don't and I don't think I would ask my DH how he feels about it. I think it would only make them more depressed and maybe even angry. It isn't like knowing that you have something that can be cured so I really don't see the point.
Interesting topic. Just last Sunday in our local paper was an article by a man who is afflicted with AD and he does talk about this. He says it was 3 years ago he was DX but knew something was wrong close to a decade earlier. His first clue was memory lapses at meetings, then one day he was at a conference in 06 and woke up one morning not knowing where he was and spent most of the day in a fog. Said it was unnerving and shook his confidence. Later in the article he says he understands what the doctors have told him about this disease and that it does move forward. So he retired earlier than planned to reduce stress levels., was put on Aricpet. He says now that the stress of work is gone he has an inner calm, gets confused but takes time to rebalance, and manages to focus on the things that matter most to him. He says it is so important to be open and honest about this disease because people don't know what to say or what to do or say. He says some days he is as sharp as ever and other days are fog.
I think it depends on what stage of the disease they are in. Early stage, there is often anger and depression (understandably). Later on, when anosognosia kicks in, there is less awareness and hopefully, less anger regarding their fate. I know this is true of my husband. He has even commented when we've seen a story on a terminally ill person on TV, "Thank goodness we are healthy." That tells me how little insight he has into what is happening to him, and I am glad of it.
My DH is still in early stage - after 7 years! He did go through the angry, depression stage, is now on Sertraline and no more anger or depression. However,he does talk about the disease and how it affects him. He also says that he doesn't know how I can do what I do - which is almost everything. He knows he isn't going to get any better and only worse and I just die inside when he starts to talk about it. I really, really, wish he didn't know or understand what it really is.
My DH has never accepted his dementia diagnosis. According to him,"There's nothing wrong with me." He was diagnosed 4 years ago. He knows there is something wrong cuz now he says, I don't know what is wrong with me." But it's not worth trying to tell him he has dementia (I would say a memory problem) because he would just deny it again & it would probably make him angry. The thing is while he knows there is something wrong he has never ASKED me what is wrong with him. I think he is afraid of what I might tell him.
My wife knows exactly what is happening to her and it is very painful for her ... and for me. BUT she wants to know all about what is happening ... up to a point. Sometimes I share information, she finds it striking too close to home, she starts crying and says she doesn't want to hear that. Other time, I'll withhold information specifically to avoid upsetting her ... but she then invariably asks me to share that information!! It's a tough line knowing when to cross or not to cross ... and the line keeps moving!
We were watching a movie the other starring Melissa Gilbert and Ken White. He was diagnosed with Alzheimer's. Near the end he made a comment that even though he still remembers things there is always a 'fog' around the memories. I asked my hb about that. He is not one to analyze things or express his feelings much, so it was not surprising he could not answer. He just said 'maybe'.
My DH knows what he has and knows that it will get worse. His favorite phrase is "But, I am not really that bad". I always reply "no you are not and it could be a lot worse"..then I say...lots of people much younger then you (he is 63) have serious conditions and have great pain with their conditions....it is a blessing you don't have any pain....he always agrees with that. He is in the late 5 stage and some of the early 6 stage. Physically he is very functional even though he has a bad heart and lungs. He does get depressed but seems to be coming to grips with his condition as time goes on. He comments that he will probably die from another heart attack so he will look good good in his casket.
My DH has never talked about or ask if any thing is wrong with him. He might blame being 87 for any problem that might come up. His brother's wife had Alz. for many years yet he has not connected his condition with hers. He just accepts what ever comes his way and doesn't worry about it. He spends most of his time sitting, doesn't want to watch TV, doesn't read anything except a headline in the newspaper. I know he can read but he would not remember 2 minutes what he read. Physically he is in much better shape than I am.
Everyone is different; as was pointed out in the answers above, some are in denial, others cannot put their feelings into words, and others write and speak eloquently about it. I have presented various blogs and resources by people with dementia in order to give us some insight. See below:
Poem by Dave Howe, who passed away a few months ago - http://www.thealzheimerspouse.com/Livinginevilfog.htm
Book by Richard Taylor, Ph.D, who has AD-http://astore.amazon.com/wwwthealzheim-20/detail/1932529233
Our attendance at a conference to hear Richard Taylor speak -http://www.thealzheimerspouse.com/richardmeeting.htm
Guest blogs for this website by Tracy Mobley, who is in her 7th year of Young Onset Dementia-
Go to Joan's home page. Toward the left-hand top, type "Living in an Evil Fog" into the Search box. It's a personal view by the AD husband of one of the people who posted here. He died several months ago.
Personally, I never told DH he had AD, only that he had a memory problem & the doc was helping him w/that. It worked for us. Personally, I don't think I'd want to know unless there was something more that could be done.
When my husband was diagnosed with his Progressive Supranuclear Palsy we did talk about the diagnosis and what it meant. By the time he was diagnosed with Frontal Temporal Dementia, he was unable to speak or communicate so I will never know what he thinks about it.
I think DH still believes he's ok, the first level of "Not me....Not yet....Not That Bad" The denial gets worse the farther along he is, which now is at early stage 6.
My DH knows he has Alz and from time to time he wants to talk about it. I have never asked him how he feels about it but he has said he has had a good life and hopes he goes before he is really bad. I do too because I know he would be mortified if he had to have someone clean and shower him.
Jean21 It is the same with my DH. I don't know what to pray for. So I just pray that I can do what I need to do for the day. I do still miss my old DH, but the new one is still a help in some ways and knowing he is still with me does help. He sometimes is able to do something with the computer that he thought was lost and is very happy when that happens. I am lucky right now as my DH goes along with what ever I say.
blue, Each night I thank the Lord when we have had a good e.g. no hallucinations or paranoia! I also pray that the next day will be a good one. So far the Lord is answering my prayers...which makes we wonder why he hasn't answered my prayers for patience. LOL
When anyone mentions Alzheimer's to my wife she goes into a comlete rage and insists that she is OK. When we are alone and I try and bring it up she akowledges that she had Alz but insists she is now better and it has been cured. I can only imagian that this is to keep people from asking about what she knows she has but won't admit. We all have stong self defence mechanisms instilled in us for protection and I belive that this is one of the few remaining functions that my wife has. Whenever our PSW shows or anyone in a nursing uniform she is very nervous and won't interact with them.
i feel it was the best option never to speak of AD and or any diagnosis other than 'memory problems'. DH accepted that and we never spoke of it again. after the initial diagnosis DH never acknowledged his illness and i feel blessed he was never aware.
Mine knows he has a Dx, and believes that the reason he may not drive, and doesn't go to work, is strictly because he has a Dx. I asked him today, because I was curious, and sometimes try to discern his feelings without making too big a deal of it or opening a can of worms.
"Many people with your diagnosis," I said, "have trouble with doing everyday things, such as taking out the trash, getting in the car, putting on clothes. Have you noticed any trouble with that kind of thing?" (These are EXACTLY the things he struggles with daily + a host of others.) He said, "no, that might come, but right now everything is as easy as it's ever been."
From my pov, it's a stunning realization that someone who cannot open a car door, put on underwear, put a key in a lock, etc...especially someone who was a carpenter and craftsman all his life...believes himself to be completely normal.
In a sense, the disease is protecting the person whom it's also destroying.
My hb: "I don't have dementia; I'm just a little mixed up inside." Do yah think? That's why socks go in the silverware drawer, etcetera, etcetera, etcetera. Gotta (1) laugh or (2) cry. I try to do 1, but it doesn't always work. We mostly don't discuss the situation.
jean21 said: 'because I know he would be mortified if he had to have someone clean and shower him'
It always urkes me when people (my sister being one) says something like: they aren't aware of it so what difference does it make? ' It makes a difference to me. I know my mom would never had wanted to live as she did, basically just existed, her last few years due to dementia and physical problems. I don't care if they are aware anymore or not, I know both my hb and I do not want to rely on someone to change our crappy diapers, wash and feed us. And then again, how do we know they are not aware?
Elaine, I have never had patience although I have prayed for it forever! When DH was diagnosed the first thing I thought was "Lord you never gave me children when I was young, why are you giving me one now". The next was "This is NOT how I wanted to learn patience". I guess the Lord in his wisdom decided I would learn I THINK I may have a little more but some days it isn't enough! I will pray for you and hope that he will answer my prayer for you. Good luck and God Bless.
I've screamed at my DW at the top of my lungs and she's thanked me. I've been a bundle of self pity and frustration. I've taken two years to come to grips at all with this. For the first times in my life I've thought about suicide. I've spent hours hating family and friends. I feel revulsion for the coming incontenance. I seeth in frustration when too many things go wrong. I've realized lately I don't even look her straight in the eyes because the sight of the horror of what's happening to her is horrible. I feel shame that everyone thinks I'm an angel around me and tells me so while I feel like Beelzebub inside.
But just like you I have put my own life aside and knowingly am taking years off my life and get up every morning and try to support her and take care of her as best I can. I'm not trying to fail. I'm doing the best I can and coming here is part of that.
Even Mother Teresa said that the lord never gave her more than she could handle but she was sometimes shocked at the confidence God placed in her.
Please people. All the conversation here is about trying to do well by them. Trying to help each other do well by them. Suffering incredible hardships including the destruction of our own futures to be faithful to our vows and to our loves.
Just a little pity and forgiveness for ourselves too. Please.
In every religion and in every philosophy the act of selflessness for the benefit of another is one of the most noble and appreciated acts a human being can undertake. Think of how you would feel if the roles were reversed. Stop cold and truly do that. You would be heartfeltly grateful.
Add to that how hard you try. How much love you do give. How many times you've truly helped. How hard the road is and how you do not run from the path.
If my wife had done for me what I have already done for her I would kiss her feet in gratitude and genuinely be overcome by the love I was getting when I so desperately needed it. I want to add that I would forgive the temper tantrums and it's true but that would be self serving. I can promise you this. If the roles were reversed and you were getting exactly and precisely what you are giving you would feel that you are truly blessed.
Is that not true? Look in your heart. Is that not true?
I've only been here for a few weeks and it's the same on the Canadian forum for AD. I know what company I am in. I feel inadequate to most of you. I gulp reading what you go through. I stare at how brave so many are and hope. And I see. I'm good at seeing. I can see that just like everybody else here I have no ability to know myself the way I know others even when I'm doing exactly the same thing they are and by that I mean sacrificing myself for love of another.
You are all too hard on yourselves by a million miles and I am not handling this well enough.
And THAT sentence almost everyone will agree with. Just the second you stop thinking I'm saying that and start thinking you're saying that.
Jean 21,When I told my Amish neighbor that I prayed every morning for ppatience, she said God answers your prayers by sending you trials and tribulations, and that is how you learn to have to have patience.But how many trials and tribulations does it take? I must be a slow learner.(I'm still praying)
I was always told to pray for wisdom - never patience. Patience will follow wisdom.
Wolf, you can find other threads where many of us has expressed what you did about the negative emotions we go through. Many of us did not have good marriages, so this caregiver job is even harder. As for how long it has taken, it has taken me almost 2 years to 'wake up' - i have sat around already burying my hb. We are now back to traveling in our RV. We walk twice a day around the park a few trips around each time. He goes out by himself and chats with people or we stop and chat when we walk - just like in the before days. Even though he misses the shop at my sister's where we were parked, he seems to be happier now. I know I am and the stress level of being away from my sister's is so much better - despite his memory problems. I actually have to agree some with him when he says he is remembering better. He has even caught himself when he starts to repeat something.
But I have not heard the words 'I love you' from him in maybe years. Of course I haven't said it to him either. I too dread the thought of incontinence, feeding, etc. that the future brings. I hope that he can go into a facility when that happens. I do not have the compassion for that type of caregiving to him.
Charlotte, you said regarding incontinence "I do not have the compassion for that type of caregiving to him". Others have also said that, including me. But, it comes on so gradually that you seem to just edge into it, and before you know it, you are changing wet or soiled Depends as part of the day's work.
Wolf, so much of what you said rings true. But also, for me, the loneliness of going through this is overwhelming. I feel the need to keep all of what I feel inside. Sometimes I think my head is going to burst because of the weight of everything hanging over my head. I thought I could do this alone but now I believe I'm going to have to talk to someone who can help relieve me of the burden I feel inside. Right now I feel my body trembling because I truly thought I would have help going through this. But, the first thing I hear when the phone rings and I say "Hello! How are you?" is: "Busy. I'm busy getting this ready for ....... I'm busy doing this for...... I have to ....... It goes on and on. No one says: "How are you doing?" They don't want to know. And they'll all deny it, they'll say it isn't true. But, it is. They don't want to hear how I really am. Because then they'll have to face it. They'll have to face what I'm going through. If they don't ask they'll think I'm fine and they won't have to worry about it or have to think of a way to squeeze us into their busy lives. I have never felt like this in my whole life. I feel as if my "me" has been taken from me.
I've been hoping for a place to post this. The other day I had the opportunity to overhear DH talking on the phone to an old friend of 30+ years who he hasn't seen in awhile. He doesn't talk a lot about his situation except to tell me on occasion that he's having a bad time or feeling confused. I felt very uplifted after overhearing this.
The conversation went something like this: The "...." represent pauses in which I feel sure she was asking him questions. She's a psychologist so I feel sure she was sensitive.
DH: "I was diagnosed with Alzheimer's. .... "I have more and more symptoms and I can't remember a lot. I forget a lot." "I can't do as many things as I could. But I'm getting along okay, pretty well."
"No, I don't drive anymore. It turns out that AR has a law that says that if you have been diagnosed with Alzheimer's and you're in an accident if anyone is hurt, even if it isn't your fault you can be sued for a lot. So Terry and I decided it would be better if I don't drive. I can drive just fine but it wouldn't hold up in court to say I can drive fine." .... "I can walk to almost anywhere I want to and if there's somewhere I want to go where I can't walk then Terry drives."
The rest of the conversation was him telling her about the recent visit by his son. He got some of the facts wrong but the jist of everything was right. As for the driving story, I never mentioned a law in Arkansas specifically and I've this was the first time I learned that he thinks (or maybe just says) he can drive just fine. I did stress when we agreed he wouldn't drive anymore the liability issue.
I felt so good hearing his take on his situation and that he's relatively content and even enjoying a lot of things about his life now.
That very night he had a little melt down but that happens at night sometimes but still.....this was so good to hear. After his son left DH told me what a great time he had and thanked me for all I had done (a rarity) and he said, "You take such good care of me."
Gosh, it feels good to report something positive. This evening hasn't gone well, so it's theuraputic to write this.
BEV: Oh shoot, just lost the post I wrote in response to yours and Woolf's. Email me please if you're up to that at booksandspirit@aol.com --- I could have written what you all wrote. Can't write anymore now.
This is written by a very dear person who has dementia: I see the changes in myself, I wonder how much longer? My husband and I have been discussing my wishes and I have been writing it down for him. I am incontinent now on a daily basis day or night. I have seen a urologist and he said the bladder incontinence was more than likely related to the FTD since the meds didn't work.
I use to cry every time I was incontinent, now the tears no longer flow as I think I have accepted it and depends is now a part of my life. I still go on as if nothing is wrong though in my mind I know I am progressing as well does my son who is almost 16 now. I can see the sadness in his eyes, I wish I could wipe it all away.
NOthing pains me more than the sadness and feeling of loss this disease is causing my husband and son, but for them I remain happy and even though I am grumpy and have outbursts at times they understand.
My brain still functions but my body is giving up. I have lost the perons I once was and the person I am now is becoming a stranger as well piece by piece.