Caregiver for spouse with TBI and dementia.

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My failure each day of late is loss of patience for the constant confusion and disorientation from my husband of 22 yrs for whom I am full time caregiver. He had an accident almost 5 years ago that resulted in his sustaining a severe TBI and he lost approx 25 yrs of memory-/our entire life together. He has also been diagnosed with dementia 3 years ago. I have no help and am isolated in our home where I care for him. He is functional in that he can walk and dress himself (I must lay out his clothes assist), can feed himself (but cannot prepare anything--I prepare his plate and set up at table), can go to bathroom himself (but is poor with hygiene and dribbles urine so I keep a Depends on him and must clean up around toilet constantly). But he forgets relationships (confuses grandchildren for nieces/nephews or might not always know sons--says it's a 'buddy' or forgets that his parents passed 20+ yrs ago and asks me all the time where one or the other is or that he wants to call mother to come get him, etc. he disagrees with me all the time and when I remind him of his accident and TBI or dementia, he yells at me thAt I am the one with the brain injury or such. He cusses at me frequently and in presence of grandchildren when he never would have used such language before. Needless to say, we have no marriage anymore. He does t even know we are married or sometimes who I am. But then he might tell me a hundred times a day he loves me--repeating so often in very short intervals that I think I will lose my mind, let alone all patience. I feel all I do is go thru daily routine of meals, arguing, telling him I am his wife who had to retire early last year to stay home and provide the 24/7 care and supervision he requires. He doesn't think he needs supervision. He thinks he works. He doesn't know this is our home. Every day he asks if he's spending the night here or if I'm going to. He sits for several hours a day going thru a tote bin of golf magazines or sale catalogs that he tears pages out of with pictures of expensive watches and argues that he needs to leave to go to 'that other building' or wherever to get these items that he says are waiting for him. Or he circles every item in a catalog of sporting clothes or boots saying those are items he is buying. He has no attention span for TV programs and confuses what is on TV with our life. It's just constant confusion for about 12 hrs a day and then he gets up a couple times at night and wanders and wants cookies and milk or anything sweet --eating much ore than he should. I manage to get him to get into shower now only about once a week because he says he has already had one and dislikes it now. He is much bigger than me and when I give him a shower, I have him wet and wash his hair while I scrub his body down so he can rinse and get out. He's not steady so I worry about his falling. He uses to be meticulous about his appearance and grooming but now he is the opposite. He won't let me clean up his facial hair (that he never had before) and refuses to get a hair cut. I put the paste on the toothbrush for him and watch him brush but he doesn't do a good job anymore and recent checkup showed he has 3 cavities needing filled as a result of his now poor dental hygiene. There is no joy in my life except for the moments I can catch with grandchildren before he gets aggravated at them. That makes me angry because he loved his grandchildren so much and would have never raised his voice at them before. I feel so cheated that being 9 yrs his junior (he's 65 and I am 56) I have had no life partner now for nearly 5 years. But then I feel guilty for feeling that way. But it's as if both of our lives ended the day of his accident. I am no longer able to be a wife or a good Mammaw and enjoy those roles like I used to. I HAVE no life. But I think of those for better or worse vows we took. More than anything, i miss the companionship and love of a husband.

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I wonder how to deal with being 56 and longing for the companionship I once had with my husband. However, it seems so long ago and bye daily routine of caregiving seems to have made it even harder to remember when my husband and I still had a marriage type relationship. On the one hand, I feel selfish to miss that and on the other, I feel cheated to have lost it and to know I will never have that again with my husband and nor do I know if I will ever have that type of relationship again in my lifetime. I feel like I'm living for him now and as long as he's my husband--even if the man I knew and loved is lost somewhere inside him now--I will never be free to enjoy sharing my life with another in that way again. And then there comes the guilt--how dare I complain and feel sorry for myself about not having love and companionship and intimacy when my spouse is suffering from a severe brain injury and dementia that has stolen the very life from him! What kind of selfish wife I must sound like. I don't believe in adultery so unless I compromise my conviction in that area, the thought of one day being able to grieve for what's been lost in our marriage and finding another to fill that void is a moot issue. But still hard to accept that at this age in my life, love and intimacy and companionship is forever lost as well.
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To Eyerishlass
I want to thank you from the bottom of my heart for the time you took to respond to my concerns about my situation with my husband. It really makes me take a look at things from a different perspective. I know beyond a shadow of a doubt that my husband would not want to be putting me through this turmoil and also know he is living his absolute worst nightmare. His mother passed in 1999 from Alzheimer's and he was always so worried about hint reacting it himself. Of course, we never discussed what we would expect of one another if it occurred for either of us, thinking I guess that there would be time. Never did a brain injury occur to us or all it would entail, let alone that the dementia that followed would serve to speed up the deterioration in cognition that he already had suffered. We thought of Alzheimer's as a progressive disease where there would be time for such discussions. Consequently, I'm left simply with knowing he had a great fear of contracting the disease someday and that without thinking of anything but old age, hearing him say when he was still a healthy working man that he never wanted placed in a nursing home. It seemed a simple request back then. Until reality struck when he had his accident. In a matter if seconds, our whole lives changed and I lost the man I knew as my loving husband when his head hit the pavement that day. Left is the shell of who he was. When we dealt with his TBI only and be was in an inpatient rehab facility for 18 months, his caregivers would comment about how much he loved me because he was very homesick and counted days until the weekends when I was allowed to bring him home. Now, with the dementia, it is just so different even from then--now he doesn't know one day from the next, cannot use a phone like he did then, cannot maintain a schedule or life binder or write sensible answers down on paper to questions to work on orientation and cognition like he did daily while in rehab. In fact, I think how that was only 2-1/2 yrs ago and how I thought things were terrible for him then, but now I realize there was still part of him left then. Now with all conversations being total nonsense and all my communication either going along with all the craziness or getting yelled at for trying to explain reality (like telling him he WAS at his mother's funeral but doesn't remember because he had an accident and suffered a very bad TBI so his brain doesn't always tell him things correctly any more). I'm sorry--realize I'm rambling here but it does help to tell others what I'm dealing with and get their take on things. And I really did appreciate your kind response. I printed it out so I have it to refer back to when I need the support. And I WILL consider al you had to say. Thank you for caring.
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AloneInKy, of course your adult sons don't really get what you are going through. Would you have imagined this if you had not experienced it?

The summer my husband was diagnosed with dementia I wound up in the hospital, via the emergency room. No time to plan any coverage for my husband. Our give adult kids had to step up and figure something out. They worked out an elaborate schedule of who would be with him when (he could not be left alone). His dementia symptoms were most severe in the early month, and he was really difficult to care for. I was in the hospital for 5 days, and at the end of that time not one of our kids didn't get it.

If your sons could relieve you for a week while you take a break (not in the hospital, please) they would learn a great deal that would help you going forward. They still might not get the part about missing your companion and you lover.

Best wishes to you. Do hang around AgingCare. It can be very supportive.
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To Jeanniegibbs - thanks for your response. I intend to get a copy of the book you recommended. I appreciate already the support I have received from this site. I only joined it yesterday. It helps just to have others who seem to understand and have empathy because I don't believe even my adult sons realize what it's like to provide my husband's care 24/7.
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You have cared for your husband "for better or worse", "in sickness and in health". You've fulfilled your obligation. The vow doesn't say "In sickness until one of you drops dead from the stress and sheer physical detriment to your own health". When those vows were created a person would have died from an injury such as your husband's. When those vows were created people didn't live 15 years past the point where they would have died had it been another era without the medical advances we have now.

Turn the situation around. Imagine that it was you with the TBI. Imagine behaving in such a way as your husband has. He's your caregiver but you don't remember your life together because of not only a TBI but dementia as well. Your husband is depressed, stressed out, doesn't even bother to get dressed anymore because his life is just a cycle of caring for you 24/7. Is that what you'd want for your husband? Would your husband be ok feeling trapped by your disability? Imagine your husband feeling so lonely while he cares for you, while you cuss and yell at the grandkids to the point where they don't want to come over anymore. Imagine your husband struggling to get you into the shower and finally just giving up because it's just too difficult. Is this the life you'd want for your husband? Is this the life your husband would have expected from you?

If someone isn't reasonable be it from a TBI or dementia they don't get a say in what goes on. If someone is unable to reasonably contribute something of value to a discussion or to plans then they don't get a say. That may sound harsh but that's the way it is. Unfortunately it's not your husband's decision as to where he lives or with whom. Is it fair? No. But suffering from a TBI and dementia isn't fair either. The life you live right now isn't fair. "Fair" doesn't come into play.

If your husband requires 24/7 care that's much more than anyone can handle for any length of time. Try not to compare your situation to others. Everyone has different situations going on with varying degrees of help, support, family, good health, etc. I find that when I compare myself to others for whatever reason I always come up short because the lens in which I look at other situations is not clear. I will always think that I don't do enough or that I'm just not enough period.

I am so, so sorry that you've had to go through this. You're way stronger than you think you are. But if you have the opportunity to have a normal life, to be happy then take it. If your son thinks that your husband needs to be in a facility then you have one person right there who will support your decision. You've gone above and beyond the call of duty. How much longer can you keep living like this? Your husband is 65 years old. Can you do this for another 20 years? Or more reasonably, another 10 years? What does that look like to you?

For better or for worse, in sickness and in health was written back when the average life span was probably 45. If that. Would you want your husband to lead the life you're living now were the situations reversed?

Peace to you.
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Dear pstegman,
Thanks for your quick response. My husband IS a Vietnam veteran who worked all of his life until diagnosed with PTSD in 2006. At the time, he believed something else must be going on because he didn't believe PTSD was a legitimate illness, or at least not one that was totally physically debilitating. But with education and support, we both learned otherwise. Fortunately for us financially, he was finally awarded 100% disability for his PTSD through VA and received approval for SSDI as well. He receives all of his medical care they VA. He could go to a VA approved long term care facility but the nearest is 85 miles from our home. So I know I would not be able to visit daily and would need to give up control of his care and decisions re meds, etc on the day-to-day basis to the facility staff. It would not cost us anything for his care in such a facility, however. He does have Medicare A & B but that does not cover long term care. I struggle to make the decision to place him because whenever I have tried to talk to him about the possibility of needing to at some point, he gets either a look of depression and says I don't want him around or he gets irate with me and says if I do put him 'in a place like that' that he will leave. Of course, I know he wouldn't be able to, but it does weigh on me that he would feel abandoned. I think at first he would ask where's my wife a lot and then I believe he would come to forget me totally sooner than he will staying at home. My one adult son (whom my husband raised) loves him dearly and has been devastated by what's happened to him but he has said for several months that he feels the time has come for placement. But then I will talk to others or read accounts where caregivers have done this much longer than me and although they agree it entails endless hours of unpredictable stress and sleeplessness, they have prevailed to the end. But my son says he doesn't want to lose me much earlier because of the toll it's taking on me. I always considered myself a strong person but must admit this is getting the better of me. I started picking at my face and arms about 2 years ago to where now I have scarred myself! I was always concerned with appearance to a degree because I worked in an office all of my life where I had to dress business-like and now I don't ever hardly get out of my pajamas because we do t leave the house where I keep doors deadbolted for his safety and nobody except my son or daughter-in-law ever come to the house, so I figure who cares whether I'm dressed or 'presentable.' I realize that's a sign of depression and take anti-depressant and anxiety med daily. I don't feel either helps much and don't take anything with potential of drowsiness because I have to be on 24 hour alert. I get an average of 3 hrs sleep each night. I take over the counter caffeine tabs 3 x day to keep going. I don't drink coffee or other caffeinated beverages. I know logically my husband would probably adjust to a structured environment like a VEterans Center where they have a special unit for dementia but I WOULD have abandonment and control issues and worry about how he was dealing when I was not there. Plus I feel it is my responsibility to care for him for better or worse. So I'm struggling with it all. He would not be happy at first which weighs heavy on me.
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I can really relate to having no life partner. I was a married woman without a husband for ten years. It is hard! I recommend a book that fully recognizes the "there but not there" nature of relating to someone with dementia: "Loving Someone Who Has Dementia" by Pauline Boss. A book won't change your situation, but it may help change your view of things.

Yes, you took For Better or For Worse vows. I won't make light of that. Now you are in the "sickness" and the "worse" part. To be true to those vows and to the love you shared, you cannot abandon him. But that doesn't mean your only option is to be his only caregiver, to live with him 24/7, and to have your life revolve only around him. Continue to be his advocate. Continue to love him. See that he gets all the care he needs and deserves. Don't even consider abandoning him. But do consider placing him in an appropriate care center.

A former member of my local caregiver's support group came back this month. His wife died four years ago. At the end he placed her in a care center, and went every night after work to visit her. He told us that with the burden of being her only caregiver lifted, he was able to once again relate to her deeply. When she died he was at peace with her and with himself. His explanation was very moving.

This is not an either/or situation -- it is not that you keep your husband at home or you break your vows. You need to find a way to do what is best for both of you. Isn't that what our vows are really about?
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I assume he gets full Medicare coverage ever since the injury. If he was a Veteran, the VA could also help you out. And the county should have a senior services or disabled services office. He really needs full time care and his MD can help you with options. Please don't see that as abandonment, he will be surrounded by more people than he is living at home, plus they can do PT and OT to keep him more stimulated than tearing up magazines. You are not getting any younger and need to survive by sharing the burden. Many hands make light work. Your grandchildren could be the light of your life if you were willing to pass the heavy lifting on to others.
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