My situation will probably be very different from most, since I am considered a newlywed, however I don't see many topics on this subject and would like to start something that includes those of us that are taking care of our spouse.
My husband, I was well aware of some his problems prior to our marriage 3-30-12, with issues due to his work environment working with the railroad after many accidents, not his fault, as you can understand by reading papers of train accidents when others are killed by their stupidity of trying to beat the train, or accidents where a vehicle stalls on the tracks. He remembers every death, and even knowing that he was not at fault, the number 57 remains in his head. The last accident was a major one when training a new engineer the person changing the track trip switch, went the wrong way ending in a head on collision, and three people died including his trainee. After that time, him being the only one that lived, this occurred over 11 yrs ago, he was removed from duty and hospitalized with many injuries, including mental. At this time besides nightmares he has been diagnosed with Bipolar,PTSD, Sleep disorder, and depression. During his hospital stay (11 years ago) he was given a chaotic treatment of electrodes attached to his head and zapped he calls it 10 times to try to help. This was some time ago, however we believe now it is causing, along with the drinking he did, dementia.
These things I have been informed can come on fast or slow, and in the last couple of months the dementia has increased to the point that I have to repeat myself every day on appointments, for instants, that are going to happen in the next few weeks. It seems his short term memory is what is really affected the most.
To add to the difficulty of this onset coming on so fast, he has now been diagnosed with Degenerative Disk Disorder and has a bulging disk, (now on pain medicine as well) so even though I am unable to do much myself due to my own issues, he now can do nothing around the house to assist me. (Two weeks after we were married I became ill with pneumonia 17th time) and was taken off my job for disability and on oxygen 24/7), This has made things very difficult since I was in a wheelchair for many years and in the last few years, prior to meeting my husband, had built myself up to be on my feet, maybe not perfect to walk around, however was on my feet just the same.
He was just given a medicine (Donepezil) that is a possibility of slowing down the dementia, which we are hoping works, but wish he would have gotten wind of this long ago…those of you having spouses with dementia, I was informed that this will not reverse anything however could give us longer together before things get worse. I now have to take care of all his medicine since he is unable to remember what he has taken and what it is for.
I am starting this string, one because getting my story out there I believe will help me and hope to help others that come in to this site with Husband/Wife assistance, not just parents/aunt/uncle and so on. And I would like to hear others maybe of things they have tried…or just to be able to connect with other spouses here so we can friend one another so we can use this as a, so to speak, bitching session, or to put a bit more nice, sharing session, to get things off our chest.
This is all very new to me, I am not sure if this is a way to start things, but am doing my best and hoping that this will open up a new area for those of us in similar situations...
Thank you for taking the time to read my story, hoping I did not babble to much, and I do hope we can get a good gathering of a group for the loving wives/husbands taking care of our spouses and getting stress relief with a little chatter.
To me that has being the answer to this problem: to answer as calm as posible the same answers, time after time. I don´y see another way.
Our friends are just beguinning to notice, and I don´t know what will happen. Perhaps we will be ostracised, perhaps we will see less people. I don´t know at this time.
Of course it means that is worsenning. What to do? I don´t see anything outside me.
What I am doing is to meditate alone anywhere, with her next to me. And I do that in cinemas, or theaters, or even in restaurants. She chats and chats, as allways did, and I travel in my mind.
That weay she is calm and I have somo precious time for myself. I would love to find out some way to be really alone once in a while... but we are solely both of us. My family is too far and her only sister runs away as frequent as she can. I believe she is scared of a similar future. Thjey have a precedent with their mother
Keep strong.
When my husband's Lewy Body Dementia was diagnosed, I asked him if he wanted to keep it private or talk openly about it. I told him that people already suspected something, because I had been asked if he had had a stroke. So, I explained to him that we can continue let people think that, or we can talk openly about it and in the process help people learn about the 2nd most common dementia. In the process, it might help someone not have to go through years to get it diagnosed like we did. He said talking would be fine, but I'd have to do the talking, because he forgets his words/sentences.
Some people are shocked that I talk about it. I don't give them the nitty gritty details, but explain the disease and the symptoms they are seeing. Absolutely everyone has been supportive, and we have even made some new friends. They invite us to all their social gatherings; accept my apologies, when I cancel last minute, because I can't pull myself together; and they make allowances for his dementia, when we play board or card games. Some people have said, you know I think that is what my mom had and they told us it was Alzheimer's. Most have said they have never heard of LBD, and they are going to learn more about it online. I think they are all learning, and that's something good that can come out of this.
Those two episodes convinced me that the time to open the game have arrived, and decided to be clear to all our friends and family. Seems to me that any other way is foolish. Except if I denied to myself. and I don´t do that from the beguining. It was clear what might will happen.
And if some isolamente happens, I don´t worry, anyhow we are quite satisfied with ourselfs. And reasonable happy.
I had an experience some years ago with the mother of a friend. Every time we went to his house, his mother asked all of us if we were friends of Miguel. All of us courteously answer yes everytime and chat a little more, as much as she wanted. After eating, she used to take a nap. And on returning she asked us again the same question. And we answered the same way.
Something similar is ocurring now with my wife, and I see my friends doing the same. I supouse that all of them and our fmilies know. Just has not came the moment to discuse it. And it may not arrive. It does not matter.
Hugs and preys for all of us. (And some extra dose of patience)
Thank you and a hug to all
Thank you and a hug to all
in this situation alone. God Bless everyone of you.
Then I pause and think how he was always there for me for all those years.
I will try to be there for him. But I am human. God Bless.
I am very clearly aware of the posibilityof placing her in a NH.
But what troubles me more is to think of my dear wife alone in a strange enviroment. No matter how far away mentally might be.
The angst is mine. I am decided to delay as much as posible that moment. The main problem to me and I believe for must of us in this situation is to balance our lifes in the best posible manner.
And my main terror is to die first: Who and how will she be?
I am taking all the posible legal measures that I can imagine, but...
Hugs for all and best wishes and luck
He examined her, hear my answers, and told me that he is sure of an Helzaimer´s case, still moderate, but without doudts. So... I am full into an other dimention, one that I was afraid to be in, my mind was inssisting in more paltable solutions. There are not, the monster is present.
Last night I sent a message to our family and close friends telling this. The answers have being marvelous, fullfilling and full of love.
For the first time since the beguinning, 3 year ago, reading those answers I have being able to cry. Now I feel better, don´t feel so lonely. I have friends and family comprehending the situation.
I acompany the toughts of P. Boss, I am very clearly aware of being into an ambiguous loss, and that is a long waystill to go. As we all are here.
Great hug to all
Usually having a diagnosis -- having something you can name that is wrong -- is a kind of relief. Now you have something specific you can say to your family. Now you have something you can look up online and learn about. And in a strange way that does make the situation a little bit less stressful. At least it did for me and I hope it does for you.
Also for the first time since I could perceived the problem I had being able to cry. I don´t know if is a sort of relieve to know what is happening. All my life I detested to be in limbo, allways was able and capable of climbing or fighting or running. And now I know what I am against, and also know that my main concern is to be as able as posible. Nothing ought to happen to me of what is depending on me. Because she depends on me. And will depend more and more.
For a long, long time to came. So I have to be a strong and healthy as posible, or both will drown.
I am taking again some activities like drawing, restoring, writing, and swimming.
At least those are in my inmediate çist of "To do" Oh, and I bought a flute, a single one. I never played any instrument, outside a claxon or a buzzing door bell, so I imagine trhat the mental effort to learn would be interesting, no matter the results. Jajajaja
Hugs to all