Caregiving for a husband/spouse seems to be a missing topic. Lets get our two words in.
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.
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Life as you know it now will change daily and before you kjnow it this life and lifestyle will no longer exsist.
Keep a positive attitude but again the best advice i can give is get HELP, not just in caregiving for him but you need to take care of you, join a support group, go to meeting, set aside time for you, get out of the house and away from the situation as much as you can.
Best of luck to you and god bless
My story:
Twenty five years ago, I married my hero, a man 14 years my senior. He is a Marine Corps combat vet, who after the foxholes of Korea took to the streets of Los Angeles, homeless, alcoholic for about 10 years. My husband could do anything.he could build anything, fix anything, figure out problems, he's a gourmet cook, an artists--our marriage was everything I could ever ask for. Then ill health( Lupus, COPD, peripheral neuropathy, chronic pain) took their toll and he became severely depressed. That was five years ago. he was in and out of the hospital.The Magic went out of our relationship, but I continue to care for him, took him to doctors appointments, urged him to shave, eat, to limit his smoking, I guess I became a nag. he fell and broke his hip.
After the surgery, he went to a nursing home where he received excellent care. I've written about this before. He was on an activating antidepressant, when he began his inappropriate relationship with one of the nonprofessional workers at his nursing home. I couldn't believe it.
After all those years of caring for him, now that he is getting better, he turns to a woman young enough to be his granddaughter maybe even his great-granddaughter. I blame the medication, the person who was supposed to supervise the nonprofessional employee, and the of employee herself, and my husband. This should never have started. It should never have been allowed to continue. The whole thing is ridiculous
This is something I've learned, and something wives should be aware of when they place their has been in a nursing home. Romances are not unusual. The outside world begins to seem far away, and ancient in memory. Relationships within the nursing home community are formed between patients. Nursing home caretakers should refrain from personal relationships with patients. This is a big no-no.
I filed a complaint which is being processed as I write this. (I have addressed this on another comment page. My husband and I, no thanks to nursing home personnel, are working out our relationship, which has weathered the storm and nothing stronger than ever. we both want him to remain in his current nursing home which other than the romance problem, has provided excellent care, and is only a few miles from our home.
The nonprofessional employee is almost stalking my husband. At least that's the impression I get when I visit. She makes her presence known. I have developed such an aversion for this woman that I become physically ill when I see her. I don't want to hurt her punish her. However, if she's not removed, and kept away from my husband, I will not be able to visit him. He knows this.
I am awaiting the results of the investigation, which is then undertaken by an ombudsman in response to my complaint. This will determine the direction of our marriage.
My problem is soft compared to what is presented today. My wife began showing strange behavior about four years ago. First I suspected of an afair, because she was absent without explanation and with varying moods.
After a while, I began noticing memmory lags, more and more frequent. And one day she got lost in a supermarket, located at home after some minutes. That sounded an alarm, and began to see her with another light. I don´t know what happened at the first time, and I don´t care.
The problem is now. About 2 and a half years she was diagnosed with a mild dementia of the kind called cognitive syndrome, And the prognose was imprecised at the time. Perhaps this year will be posible to refine the diagnose, that according to the initial studies can lead (In broad terms) to: Halzheimer, multiple accidents or other.
Actually, I can not trust her to do many things, or going alone to places other than around the block. Her memory is visible deteriorated, still sort of functional in small chores. Has changed to suspicion attitudes, some lies, careless with our home, is beguinning to show careless personal aparience. And others, like not being able to handle credit cards.
I am planning to stay with her as long as possible, and not too sure what to do after she beguins to have a more grave memmory problems. I will play the tone that comes.
I hate the idea of imagining her alone in a strange enviroment, not matter knowing that she no longer knows about.
Looking at my problem, easy compared to the New Wife I send her a big Hug and wish her the best of posible days, also I ´ll pray for her and all of us.
We've been married 13 years, so it has been most of our marriage. I understand where newwifecare is coming from, but am further down the road. It started with him not being able to keep a job. He's gone through 15 or more (I lost count). I worked full-time at first, but went to part-time so I could deal with my own health issues and help him with his own business, which we started thinking that he couldn't fire himself. But it ended up with me having to be with him constantly and I physically couldn't do it. Lewy Body affects the executive function, which means he had trouble following directions/procedures and making decisions. Even decisions as simple as where do you want to go to dinner, restaurant A or B. Now he also has trouble putting a sentences together and recently started using the wrong word for things.
I must say that once we got diagnosed, he got some meds that helped. He is on disability, but he is somewhat functional at home as long as the routine doesn't change and I'm there to clear up frequent confusion. If there are changes, he is ok as long as I'm there (his security blanket) to deal with whatever comes up, and repeat things over and over.
Since we had such a short time together, pre-symptoms or pre my noticing, our relationship has changed from passionate love affair to good friends and roommates. I've had to stop working outside the home, and worked at home teaching online for awhile, but currently not and at 59 feeling like my life is on hold, and someday I'll have get back in the workforce. His inevitable decline has been slow, so on one hand I have time to adjust, but on the other hand it makes the "road" look like it will go on forever. I think that is my biggest frustration. Most people get LBD in their 70s+, and the prognosis is 5-8 years. What is it when they're 60 and had symptoms for 12 years? I can't ask the doctor, because I don't want my husband to hear the answer. He would get depressed, and that would be just one more thing to deal with.
It is very hard to try to work 40 hours a week and take care of someone in this condition always asking the same questions, not remembering what is going on around him more that a couple of minutes. At least so far he had not forgotten his family nor mine which help as much as they can.
It is hard to except (for me anyway) that my husband will be dying in the near future and to watch his memory go as well. All I can say to everyone else is that we are not alone in this path we have taken on. One day at a time is the only thing that keeps me going and remembering that it is the disease not the person. Hang in there it is hard but survivable.
Now my mother has dementia. Although my husband has died I'm still on this site.
Many aspects of caring for a loved one are similar no matter who the loved one is. I believe that many, many other aspects a slightly or significantly different when we are caring for a spouse.
Hang around. You can learn a lot here, and you also have something to offer. Just don't be surprised that there are no articles addressing spousal caregiving and that most participants care for a parents. That is what this site is for.
I am a spousal caregiver. It is shocking how the vultures start flying around when they think a relative is vulnerable. Yet, they don't really want to help you they just want to stir the patient up and see what in it for them. I say thank you for all the caring. Here we are all in this situation together. Take real good care of yourselves. Good Bless.
Giving up is not an option for us!!!!
I turned my whole life into a Caregiver Attitude Goal. It was like I was possessed by a person who I didn't know was inside of me. I was never so focused on anything in my entire life. I knew one thing and one thing only I couldn't live with myself if I threw in the towel. I know that the majority people on this site have the true gift of giving. I am telling you this because you need to know your special and you matter. If negativity gets in your way don't welcome these thoughts especially by anyone who can't support you. Try to focus on what you can do and not what you can't. Put one fire out at a time. You can only do your best and that is all you can do. If you got married for Love that is what you need to focus on. That Love should be your strength. You came to the right place you will find support in the good people here.
My husband is totally dependent on me at this point, meds, dressing, toileting, showering, feeding & so on. He has frontal lobe dementia and his speech has been greatly affected, he barely speaks ans when he does it isn't always understanable BUT he still knows me and still tells me i'm pretty and that he loves me. This warms my heart and breaks it and the same time. I too am very grateful for all the wonderful fun filled years we had together before this horrific disease crept into our lives.
Everyday is a new day and everyday caregivers like us do the best they can and that is all anyone can ask of us. You are not alone.
In many of the comments I am seing frequent visits to the physicians, of various specializations:neurologists, psiquiatrists, general practitioners, etc.
When my wifwe was diagnosed the medic indicated a drug that may help her in various ways. Perhaps. Probable.
In exchange she would have to change her way of life, some of her habits, like time and way of sleeping, some foods, no alcohol (and allways we have enjoyed some wine or beer with the meals.
In exchange of what? There was no warranty of improvement if we did those things. Was a big, very big question.
When at the beguining I tried to applied the changes and give those medicines, she was unhappy, very unhappy, not understanding why.
So I decided to let her live the way she enjoys life, the way we have allways were. To me, us, is has worked fine, she seems happy, playful, content.
And we have seen less physicians and take very few medicines. I don´t know if this is correct, don´t really know, but seing her happy is enough to me, even if I know that she may not be aware of what is happening.
I am planning to make a full check -out to try to define the diagnose. Pray for the posible best, and pehaps change the tune.
Even so, I don´t think in changing our life strategy. (Even if is a one side desicion)
Yes, we are in a boat that has some few rules: One is that this probles change our dear ones, to incredible conditios; othe is that this situations are of long duration, the least I have read here talks of 5 years, many are refering to 10 years or more ; and the third is they all end in nightmare years finishing in deaths. I have read Pauline Boss, first superficialy, then with great interest. And given agreat deal of time to the question of costs, and to the satisfaction for the dear in trouble.
Why I am saying this, I have written before that I choose to avoid meds and medicatios as much as posible (I know that in my case, this is posible) and my wife is following me, I also know that shew is doing this wihout knowing why. But I doubt the existance of a drug able to cure (Or improve signicativaly) her
condition, and also had read a lot about tentatives and experiences, without clear results. So I prefer to give her the little joy of a glass of wine, of choosing to go to a certain place of her each time more vague memories.
And with as much patience as I can handle, repeat answers to the same quatios and consideratons. And dreams. We have done some travel. It is very cansativefor me, constantly afraid of having her lost in a strange place. About a year ago she got lost in a shopping center in her home town. So I am not having the same life as before. But is not of aour choice, itis the disease, and ca not do much.
That is why she is not having much docs and medicines.
I am sure that this situation will change and at a certain poin I will require an asstant, to allow me some precious time of my own. I am wating. An still at that point, I am not sure of trusting much medicine in our lives.
Luckily (or perhaps not) as a mexican I am much free of the fear of dying. We all do that, the doubt is when and how... And most of us in this site are very well aware of this... and chained happlily or unhappily to a dear one in deseperate situation with only one end, at a long, long time
Best regards and prayers to all (believers or not, here it does not matter)
The same happened with the sleep, afte interrupting the meds, she wa irregular for a while and then adapted, and follow the usual costume of many years. Of course, sometimes either one of us has a bad night, but... who doesn´t?
For the firs time in many, many years, I had a nightmare a couple of days ago, I dramt that we were in my city, crossing alarge avenue, she went ahead walking fast and all of a sudden a truck came from around the corner and run her over. Inmediatly after, I run to her, but she was like death. I was crying and calling her my love and telling her that I love her so much...
I wakew up trembling and moved... She awaked and asked what happened... I did not tell what happened
If you know what the questions are.... " what days is it?" write it on a board and make it his routine to look at the board for the answers.
My Mom always went to wash her hands and said where's the soap I showed her but she did not think it was soap because it was liquid. She didn't recognize it as soap. So I finally figured that out, and put a bar soap on the sink ...The End of that question.