Talking with my wife

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Talking with my wife

For those of you who haven't read my past entries, both my parents died of complications of forms of LBD and I am currently being evaluated for the early stages of DLB. After caring for for both my parents, reflecting upon the changes I have seen in myself over the past two years, and reading extensively on the disease, I am approximately 80% convinced I am in the early stages. My wife and I have discussed the possibility in fair detail before but we had our first truly earnest discussion last night concerning our possible future.

She is terrified, and rightfully so I believe. We have seen first hand the ravages of this disease, both to the family, especially the primary caregiver, and to the patient. For those who have never gone through it, this is an almost incomprehensible horror. My worst fear is what kind of monster I may turn into and what torture that monster may put her through. This sweet lady does not deserve that, it is not the way she should have to remember our last years. Don't get me wrong, we have had some awesome years, years that began when I was 14 and she 13. We eloped at 18 and 17 respectively and have grown together, learned together, reared a family together, grieved together, and were now looking forward to our "golden years" together". We are feeling robbed. She especially, is angry. Angry that the time just for us may be taken.

We discussed at great length the things I have been noticing changing in myself. We had superficially discussed these before and agreed there were changes there but I didn't realize how much our lists overlapped til last night, I am convinced all the changes are related to early stage DLB. She is just as convinced it could be related to the insomnia, RLS, extremely high stress levels of the past several years and grief. I can't disagree that this is a very good possibility. But if I follow the diagnostic criteria for DLB I see myself as though I were looking into a mirror. I have watched several YouTube videos featuring Teepa Snow discussing DLB and it is as though she is talking about and to me. BTW, if you are seeking information on dementia and have not heard Ms. Snow speak, please do so, she is awesome.

We discussed the hard conclusion that as I progress, again assuming I have DLB, there will come a point that she will no longer be able to care for me in our home. I know this and I accept it willingly now while I am lucid. That may change as my mental status changes but I want her to know that the "me" that she married and lived with all these years understands and expects this to happen. I don't want to destroy her life anymore than can be helped. Also, I realize it will be very difficult for her to maintain our large home, both physically and financially. So I don't want her feeling guilty about selling and downsizing. She needs to make her life as easy and comfortable as possible.

We got a good start on rearranging our financies for the future. It's amazing the changes that must be made to protect a potentially surviving spouse of a dementia patient. We've made an appointment with an elder lawyer and estate planner.

I've asked that she educate herself as much as possible about this disease. Right now she would like to lay back til we know more but I feel knowledge is power and early diagnosis is key to a longer, healthier life. I want her and I to be open with family and friends, to educate them as much as they will allow. Again, knowledge is power and she is going to need all the knowledgeable help she can get. I have asked that we involve our children as much as possible without taking over their lives. This can become all encompassing for the child and they deserve a better life than that.

Well, that was the pleasant evening in our home. I feel we accomplished quite a bit. Unfortunately there will be a lot more to come but we will get to that as well. Together. As we have everything else over the past 40 some odd years.


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Hello Randy, My husband has been diagnosed with LBD recently. We were told that this kind of Dementia is NOT inherited, that it just randomly occurs. My kids were worried about this when they first found out his diagnosis. I hope that you get the help you need for whatever it is you are dealing with.

Jan 16, 2017 - 7:56 PM by Helen M

Hi Helen, Thank you so much for your reply. I'm so sorry to hear of your husband's recent diagnosis. I hope for his and your family's sake that he is still in the early stages and you have several good years left together. If you haven't, please educate yourselves as much as possible, enjoy all that you can together, and by all means take care of yourself. Burnout of the caretaker slips up on us so quickly and quietly. This makes everything much worse for both you and your husband. Hearing what you have been told is quite comforting. I, like you, have been told by most physicians that there is probably no genetic component to DLB, especially in the early years when my father was first diagnosed. Lately, however, I have been reading research and have been told by different physicians who treat dementia that, more and more, there appear to be sporadic families that show genetic tendencies to DLB. It's probably my knowledge of the possible but unlikely combined with the stress of the past two decades and all the changes I am seeing in myself that are making me so convinced. In the back of mind I understand the cause is much more likely the high levels of stress, grief and some depression. It's just very difficult to ignore all the similarities. I hope things go well for you, your husband and your family. Randy

Jan 17, 2017 - 5:25 AM by Randy C

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