Family & Relationships
Caregiving for a husband/spouse seems to be…
Give a Hug
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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Give a Hug
Jan 30, 2013
I totally understand your situation. My husband was diagnosed with dementia last summer, following knee replacement surgery. I had noticed a change in his personality prior to that, following shoulder replacement in Aug. 2010, but had no idea it was dementia until a year later. In hindsight, I now remember signs that I should have noticed. He now is in assisted living. He is sneaky, dishonest. He has a brother & sister-in-law who never had anything to do with him, did not even go see him when he had three surgeries all within 6 weeks or call to inquire about his condition. When they found out about the dementia, they became his best friends and are attempting to take advantage of him and encourage his dishonesty and help him to hide information from me. I have now become an amateur detective, since it's obvious they feel they can insert themselves in our private, personal business, convincing him none of it is any of my business which he continues to tell me. He personality has completely changed, I feel as though I'm married to a stranger. Everyone tells me not to take it personally, but this is very challenging. I wish you the best in being able to handle this, it is very challenging and admire you for all you're attempting to do to help him. If he's being honest with you and no one else is interferring in your life, that will be to your advantage. Being involved in this website is very helpful, you realize you're not all alone and it's an opportunity the vent.
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i am a caregiver of my husband who has PTSD, depression, chronic pain, distruptive rem sleep disorder, he also has nightmares and diagnosed with dementia in 2006. it is true that it seems that most caregiving stories are about aging parents and very few are in regards to spousal caregiving. He is 62 and i am 53. We have been married 33 years. If you are just starting this journey my best advice to you is "get ready to be overwhelmed and GET HELP". I have been lax in getting help for him and for me because i am a strong willed woman and had the attitude that I can do it but i'm here to tell you that i don't care who you are this journey can not be done alone, it is imparative that you seek out help.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
dear new wife caregiver, it sounds like you didn't get a chance know your husband as a healthy , fully participating person. You plunged right into the role of caretaker. Do you have any happy memories of good times shared? I hope you do. A regular day, shared doing normal things, is a treasure.
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.
I cannot imagine knowingly taking on the care of someone with dementia or any chronic/terminal illness. You are to be commended for your courage. My husband was recently diagnosed with Alzheimer's and with Parkinson's back in Oct of 2011. A new neurologist has offered some hope/insight into his conditions and is doing extensive testing to confirm the diagnosis. In the meantime, something dramatic happened with my husband on Christmas Day of 2012, and it's been a horrifying roller-coaster ride of paranoia, suspicion, depression, agitation and deepening loss of understanding of where we live, when we moved here, when we were married (23 yrs ago), etc. The doctor has given him new meds which are helping a bit, it seems, but every day is like walking on egg shells...never knowing what he might see/hear which will trigger a negative reaction. In just a short time, I have been plagued with anxiety attacks and robbed of precious sleep which we all need to cope with the demands of all this. The sad/scary/frustrating part is knowing that all the horror stories we read about of elderly parents wandering off, pooping the bed, being mean are all part of our future...and one in which we have no control. Until my husband can't physically take care of himself (eat, wash, shave, dress, use the bathroom, etc), I have no choice but to deal with his paranoia, suspicions and agitation. It almost seems the physical care would be far easier than the mental, but I'm not there yet, so I don't know. I am glad that newwifecare started this string because it is true that most of what we read here is about caring for elderly parents which is just as stressful, just as heartbreaking, but is still different. The person we shared our lives with...even if it was just a short while....is not the same as a parent. A spouse is a partner, a friend...to see that person change and become a stranger is so hard. Looking back over the past year or so, I see the warning signs of what was coming. Why the neurologist where we used to live didn't recognize it or talk to me about it is beyond me. Maybe what happened the last month could have been avoided or at least the feeling of being blind-sided could have been avoided or at least softened. I am hoping and praying that this new doctor is truly interested and concerned and will help us face the inevitable with strength, courage and whatever bit of dignity we can salvage.
I am glad to see these comments, I have written twais without answers. 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.
It's not just spouse caregiving that needs to be addressed, but also early onset. I'm 59 and my husband is 60. He was diagnosed 4 years ago with Lewy Body Dementia, after trying to get him diagnosed for 7 years. That's 7 years of dealing with something and thinking I was crazy, since the doctors couldn't find anything. Part of the reason was he was too young for dementia, LBD fluctuates, and they were just starting to figure out Alzheimers, and his symptoms were different. LBD is actually the 2nd most common dementia, but few know about it? We didn't get diagnosed until he started having "Parkinson's like" symptoms, and chiropractor suggested taking him to a Parkinson's specialist, who knew what it was and how to deal with it.
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.
I am in the same boat with a husband who is waiting for a brain cancer to return (not curable) and now experiencing dementia coming on rapidly from Chemo, Radiation, plus possible what would have happened down the road eventually. We have been married almost 10 years and he is only 60 years old. We have tried Aricept which left him extremely angry all of the time. He has gone off of this medication which has helped somewhat.
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.
I would just like to point out the subtitle of this site's name: Connecting people caring for elderly parents. That hasn't stopped me from being a very active participant here while taking care of my husband with dementia. I have found it very valuable. But since the site was developed for and aimed at people taking care of their parents it is not surprising that most participants are caring for their parents! :-)
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.
Finally, a discussion I can actually relate to. It has been more than a little frustrating to read so many comments from those caring for their parents and so few from spouses caring for spouses. My husband and I have been very happily married for 26 years; he is 76, and I am 8 years younger. It was suggested to us about 3 years ago that he may be in early dementia, and a neuropsychologist who evaluated him then felt that his condition results from a progression of brain damage suffered in 2003, when he had a subdural hematoma. While many of his faculties from the uninjured side of the brain are still fairly well intact, the increasing deficits he's been manifesting are consistent with the injured brain hemisphere. And I can definitely see a progression of the dementia behaviors, as well an increasingly profound short-term memory loss. I often equate my existence to negotiating a minefield, never knowing what will set him off, never sure of whether I'm dealing with the man I love or his evil twin. Initially, he primarily needed me to assist him by dispensing meds; but he has in recent months begun to require my help with dressing (has forgotten how to tie a tie, cannot concentrate well enough to make clothing selections, etc.). He's become more vulnerable and impulsive in financial matters, has fallen for questionable internet offers, and has been taken advantage of by friends and relatives. He's also having occasional incontinence issues. So, yes, the relationship does change at some point from one of great, passionate love to one of caring, friendship, and compassion. And, of course, by degrees I am assuming more and more control. Gradually, though, I am learning to take things as they come, and keep reminding myself that it is indeed the disease, not the person. And I make it a point to take good care of myself, as well, so that I can take care of him.
WOW! I am so glad to hear from so many people experiencing so many of the same problems...even tho I wish none of us had to deal with any of this, at least we know we are not alone and that there is hope, however small, that we can deal with the never-ending changes, not knowing if it's Dr. Jekyl or Mr(s) Hyde to whom we are speaking at any given moment. Although my husband has been diagnosed with Alzheimer's, I suspect it may be related more to his Parkinson's or to Dementia with Lewy Bodies. The latter two are not well known and those who are dealing with it are sometimes caught in a hailstorm of misinformation. There is an association for LBD I'd encourage you to check out on line. I just did recently, and have received some info from them (just today) so I haven't had time to read it, but I will. I'm so glad I found this site. It is so good to be able to "talk" to others who are experiencing the same emotions and fears I am. Early onset is another beast that is really scary. I have a friend from my old church back in TN who's husband had early onset. He passed away last year after just 5 years. His wife was so strong through it all, especially since the week her husband died, she found out she had breast cancer. She is doing well now, and I attribute her courage to her strong faith and a wonderful family support system. She was very fortunate to have her family close.
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