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.
How can you get him to agree to hire help? What happens if you "ask" him to mow the yard? I know you don't really want him to do it. What if you said, I'm hiring someone next week if you don't get it done by the weekend. Then when he wisely doesn't try to do it himself, say, I have to hire someone because you're too busy. Then he can say that he was GOING to do it, but you were just too impatient. Face saving.
Have you tried begging? My father never responded well to logic, but he understood and respected "want." Tell him it may be silly of you, but you WANT to hire so and so because ----- He needs the work, or he will do it right now, or it makes you so sad that it's not done, ------ and will he please please just let you do it? Because you WANT to do it.
What works with him? You should try not to make him admit that he can't do these things, or admit that he's being irratonal. For example, "You've mowed the yard 500 times. You should just take it easy." Would an "irrational female" temper tantrum work? He could feel superior to you by remaining calm. Bribe him with sex or a special food. Agree to skip one of your activities to stay home with him to watch a special movie.
He may be a real tough nut to crack, but try every different flavor of honey, because it usually works better than vinegar or logic.
Jenx4740's regarding your concerns about financial survival for the spouse, we're in the same boat. We're living on his on Social Security Disability, with VA health benefits for him, which works for now. But I know when we hit the care facility stage, our assets will be an issue. We'll probably have too much to qualify for assistance, but not have enough to pay for a care facility, as least not for long. The big middle class "Catch 22." So the big question will be how do I come out with enough to survive. Since I had to retire early to take care of him, I'll probably be out of the workforce too long to go back to my old profession, and will probably live into my 90s, if family history is any indication.
We have lived frugally all our lives, so have a little put away. It would have been enough to continue to live frugally and work part-time, if this hadn't happened. Unfortunately, the last few years of medical expenses (prior to getting on VA) have caused some deferred maintenance to our house. A friend recently suggested that I make sure to use some of our savings to get our house in top condition and a new car, so I am left in the best position possible, and there would be less savings to count against us. In our state, I will be allowed to keep the house, a car, some savings and some of his income. Anyway, I need to go to an elder law attorney to figure how to do this legally.
It's all very nerve racking, since my crystal ball is on the fritz.
I fall down from time to time, usually from not looking where I'm going, and I am certainly shakier afterwards.
Did you notice that there is a section here for PD? Again you probably know that. I know very little about the disease, myself. Good luck.
Hilarious in a disturbing way. I know what you mean. But my husband would make up reasons why!
Yet another reason to be glad I'm retired. God bless us every one.
We need to set up our limited resources so that whoever lives longer will have assets to live on, and so that he will be eligible for Medicaid when our assets run out.
Has anyone gone through this with a spouse who was still competent? What was it like? Was it painful?
You know sometimes we don't get to give good news here, and I had to share this with you all. Yes he still has dementia, that will not change and that is hard on us all here, however what a thrill to have something go right...God bless you all here...and just wanted to share good things do happen for us once in a while here.
I may not be able to get on a lot for a couple of weeks while he is not allowed to carry more then a cup of coffee or twist, and the recovery is so very important because he forgets that he can't do things...I am staying up a lot right now, not much sleep and watching him close because we want him to be careful. Hugs you all..
About 5 years ago, (my wife had 65) I began noticing variations on her conduct, things that she did not explain. First I tought of an adventure, out of her character and age, but not imposible. So I kept to myself observing and began keeping in mind the conduct alterations. Without much comentaries. Only things like: Where were you? Why? winthout insisting, and saw failures in the answers. I wish that would have being the problem! After about a year she changed, she began forgeting small things, messages, etc. And one day she was lost in a Mall, a large one but not enormous. So I decided that we had a diferent problem. Let another year passed and about 3 year ago I told of my suspicions to our GP at the time of a yearly check-up. He weas worried, examined more carefully and ordered a psychological cognitive exam. I made also, so she did not exactly know why. If I was wrong, would beno harm.
Unforunately I was right, and we took a diferent way of seeing life. The dianose was clear, Not the prognose. And I let another 2 years go by, observing very, very carefully everything
A week ago we made another ChUp and came the confirmation, it is Alz.
In comsequence all is changing again, to begin with, I advise in a e-mail all our close friends anf family. The answer has being conmovent, full of frienship, worrieness, and I believe, in love.
Now I will wait the next development. That is in few words my experience.
Best of posible lucks and hugs
I am not surte if carpeting is a good idea, in my cse I woudn´t do it. (now it is done, so...) I feel myself more surefeet in surfaces like wood (or sinthethics like) but of course you know bewtter your situation. About the cane perhaps you ca mencionate that is elegant, I would suggest to choose a nice one, not one of those horrendous orthopedics ones.
Thank you for sharing your experiences with polio. I will check hubby's shoes. Yes, a cane is a good idea, just don't know if he'd be receptive yet. Since the last fall, we sold the house, moved out to the country and the house is fully carpeted. He has fallen a few times but no injuries.
It comforting to know I'm not alone and I appreciate the opportunity to learn and share.
On another aspect: I had polio as a baby, living my whole life with weekness in my left leg. And once in a while I fall, in my case I don´t have weakness, so never had being more than lacerations and some pain. But because of it, I am very careful of the shoes, not special, but well made in the base. Also at some times or circunstances I use a cane, I have some (Having various is for vanity, but all of them are useful and adequate) I am particularly careful in marble, or polished stone, rain and stairs.