Today's blog is very special. It was written by one of our members who wishes to remain anonymous. When you read it, you will understand why. I think it captures everything about being an Alzheimer Spouse. Please log onto the home page - www.thealzheimerspouse.com - to read it.
I have a question, does the author mind if we copy this as a word document to hand out? Also, moorsb, how do you know the author is a SHE? (just curious!)
I feel that I could have written this myself! It is so "right on". I have had and do have all these thoughts and feelings but have never put them together in one place. It is very painful yet at the same time comforting to know that we all really understand and share this dreadful affliction! Many thanks to this author.
Thank you for sharing! I feel so blessed that someone out there know how it feels. The nights are the worse time for me too--usually around 2 or 3 am. I feel so much better just knowing I'm not alone in this journey. I am new to this website. My husband was diagnosed with vascular dementia last April...after several months of not knowing what was going on. Since then, II'm trying to accept our new way of life, minus all the dreams we had for our retirement. He is 61---I'm 57. Thanks to all of you for helping me not to feel so alone.
You and your husband are almost exactly our ages. We have been at this since the fall of 2008 officially, but several years before the actual diagnosis I knew something was wrong. All I can say to all of us spouses out there is to stay strong, find solace in faith and family, try to keep a sense of humor, although that is SO difficult at times, and don't be afraid to ask for help.
nccaregiver indeed your post thoroughly describes how everyday life is for us as dementia caregivers. it should be the poster for AD commercials! divvi
welcome lucky1!!!! glad to see we are finding others that feel the same.
Hi I just recently found this site. It has been a great help for me. My DH was dx a year and half ago but i have been seeing changes for quite a while before that. We are from avery small town so there are no support groups here. This blog is so true. I would also like to share it with those who say " I don't see anything different about your Hubby." They are not here 24/7.
Terrific essay. I copied is and emailed it to my eldest girl who has lived out of the country for 3 years. She comes to visit once a year and when she comes this time she will see changes no doubt. But she has no idea what is involved in taking care of Daddy. This essay sums it up like no other I have read. I am going to send it to our ALZ Assn so she can share it with the group next month.
How you got into my head and heart I will never know nccaregiver, but you are awsome. Thank You so much for putting into words on paper what I can only verbalize to my Lord. You must be the most understanding person alive, and I thank you so much for putting words to our live with this horrible disease. My dh would have loved this a year ago but now would never understand it. God Bless you with peace and patience for all you go thru. I am starting to attend a caregiver support group and am going to share this with them along with this beautiful site...... Hope all have a great night
I really don't know what to say. The out-pouring of approval of my thoughts and feelings has left me overwhelmed and humbled. Let me just say this: I would not have had the courage to write what I did if not for Joan. Let me explain:
I have been a casual visitor to Joan's site ever since my spouse was first diagnosed. I needed resources to help me deal with what I was going through, and I just Googled "Alzheimer's , Spouse,", and some other generic terms, and Joan's site popped up. At first, I used it as a resource for EOAD, but then I started to read her blogs, and started to understand what she and Sid were going through. My epiphany came in December of last year, when Joan wrote her December 9th blog, "Mourning a Living Spouse". I'll tell you, folks, in that blog, Joan addressed and expressed my inner-most and darkest thoughts and feelings, and, because it was "out there", it gave me permission to think that it was OK to have those feelings, no matter how dark they were.
After a few weeks, I thought that maybe, just maybe, I could write something somewhat equivalent to what Joan had done, only addressing the entire experience of day to day life being an Alzheimer's Spouse.
I sat down at my computer and, let me tell you, the words simply FLOWED out of me. I told Joan when I submitted my essay that it was a truly cathartic experience for me, and it truly was.
That would have been enough, but my original intent, other than catharsis, was that I hoped my words, as Joan's had done for me, said to fellow spouses in the same situation, that it was OK to have these thoughts and feelings. Your wonderful comments have let me know that my purpose has been successful.
I have noticed some conjecture as to my gender, and as with my identity, I wish to keep that anonymous. Personally, I don't care; gender is not an issue. What can become an issue if my gender were identified would be, "Oh...that's a MAN's point of view,", or "Oh, that's a WOMAN's point of view". I wanted to avoid any gender-specific identification with what I had written, because, as I said in the opening of my piece, Alzheimer's has no regard for gender.
In closing, I would urge ALL of you with similar pent-up thoughts and emotions, to write them down. Put them on paper, and hold them in your hands. Read them; share them, if you wish, but then, put them behind you. You have taken them from your innermost, darkest places, and they have been exorcised from you onto a piece of paper. Take that paper and burn it, flush it, or bury it in the backyard. The point is, keeping this all inside of you will poison you, just like I said exhaustion will. If you have the guts, share it, like I did. Let me tell you, however, it took A LOT of soul searching before I put myself "out there" for everyone, which is why I will remain...
I think the article expresses well what any caregiver of a LO with ALZ feels and gender has nothing to do with it..it is the human aspect of it all. When I read the article, the thought of the gender of the author never entered my thinking..I focused on the aspects presented and identified with all of it.
nccaregiver's comment about putting one's thoughts on paper is so important. I used to keep logs to try to convince doctors that my wife was NOT suffering from mental overload, stress, anxiety, or depression ... all conditons she was misdiagnosed with and treated for between the ages of 59-63. I kept those logs to document what I thought were symptoms of AD, but initially doctors paid little attention to what I wrote. We finally went to doctors who did read my logs and do more extensive testing and, sadly, in time my wife was diagnosed with EOAD. I no longer keep logs documenting all of my wife's symptoms on a daily or even weekly basis. There is no point to that, although I do note in my logs when new symptoms develop and I share those with doctors when appropriate. However, I now keep different kinds of logs wherein I document my feelings about what is happening ... about what is happening to my wife AND about what is happening to me. Writing about my periods of depression, my fears, etc. are definitely cathartic, help bring me out of those dark places, and help keep me sane! I also share my logs with our children (ags 43 and 41) to keep them apprised of what is happening. But let me suggest yet another option for writing ... to you and all who enjoy writing. You can try to make those who are unaware of 'our AD spouse world' to become more aware of what we deal with day to day by writing for publication. You can also write for publicaton to try to improve the current practice of diagnosis and treatment of AD patients and their caregiver spouses, and to try to simulate national debate on the need to increase funding to help find effective treatment ... and eventually a cure ... for AD. I have taken on this advocacy role. It's not easy; medical journals are not that receptive to articles written by non medical people, despite the fact that there is probably more collective wisdom among Joan and the people who post on this site than is present in 90% or more of the neurologists, geriatric psychiatrists, primary care physicians, and others who "treat" our spouses. Similarly, it is not easy to get a major magazine or newspaper to consider unsolicited articles or op ed pieces from 'lay people' like us because we're not considered 'experts' in the field ... even though we are experts given our experience with this disease!! But ya know what? Even when my article submissions are rejected, the process of writing/revising/editing is VERY cathartic. And when an article is published and I can see the effect I'm having ... even if it's just on one doctor making a change in his/her current practice based upon something I've written ... well, then there is a lot of satisfaction. To paraphrase the ending to one of my most rejected op ed pieces arguing for more AD funding through NIH, no medicine will come along in time to help my wife, but maybe one day in the future my children or grandchildren will not have to suffer from Alzheimer's. So, to all who enjoy writing and sharing their feelings, think about going beyond sharing at this outstanding site ... the best one on the web, in my opinion, and the only one I go to every single day whether I post or not ... and consider an advocacy role by submitting your articles to major medical journals, magazines, and newspapers!!
My problem is finding TIME to do this sort of thing. I started a diary of sorts about DH for the doctors and to clarify reasons why I would not do something or go somewhere and why for future reference. Now I just don't have that kind of time to be creative in writing.
Wonderful blog. It should be read by the people who are conducting studies on caregiver stress. The medical community recognizes we need help, and this essay captures so well what we are up against, emotionally and physically.
Mimi, I am lucky to be able to get by on very little sleep ... always have been thatr way, and in the past 4 years or so, I've been surviving on even less sleep each night. I do my writing either very late at night, after my wife is alseep ... or very early in the morning before she gets up. Since my wife now sleeps 10 hours every night and I sleep 5 or 6, the time is there for me when the passion to write surfaces. Writing my logs is therapy for me, so even if not writing/revising pieces for publication, just maintaining my logs is cheap therapy ... it helps keep me sane and makes it easier for me to get through what is on my plate.
If my writing were so eloquent I could have, would have written this article. Every sentence almost an autobiography of my life the past few years, and what I and my DH are facing the next few years. My DH never strayed but we have had serious problems in our marriage due to alcohol and I too considered a separation many years ago. I stayed because of love, and will continue to care for my DH as best I can through all my sadness, anger, aggravation, depression, lonliness, and exhausion. I am just trying to find and create moments of joy, though it is difficult. My Lord said He would not put more on you than you could bear. His grace is sufficient.
Welcome and thank you for saying what we have all thought and felt as Caregivers. I have a tendency to be very wordy when I write here. I agree with your thought - write it down. I currently have in excess of 600 pages written. At no time have my words rang as true as what you have written here. Again - thank you.
If you have read here - you find that no feelings are gender specific. So for here regarding the essay, your gender is not important. You touched on a subject we have discussed here previously and that is when the afflected spouse has been unfaithful but you choose the marriage over divorce or the marriage was not good. My hb had an affair back in the 80s but I stayed with him. Now, more than ever, if I do not watch it I will wonder what my life would have been like if I had chosen to leave him. But that thinking only causes depression and more stress so I try to not go there - live in the day.
NCCaregiver, thanks for your article. It really covers what I feel. I have shared it with members of our church. I'll be interested to get their reactions.
I too have shared this essay with others, mailed it to some, email to others and sent it to our local Alz Assn mod to use next month if she so choses.
I would add only one thing to the list of frustrations and that is the total lack of understanding by friends who are close enough to see what is going on and try to compare our situation to that of their parent or someone they know who is 92 and has age related memory lapses but not ALZ. Those who would tell us if we repeat it over and over they will get it, or that we can just leave them ( sometimes we can otherwise no) at say PT and just go off and have our normal couple of hours. Well not if that person will resist or tell the therapist I don't need this treatment etc.. It makes me want to shove the book 36 HOUR DAY in their hands and tell them to read this... Some of the most well educated people are the dimmest when it comes to this disease.
I have come to the point that when someone I know says " I know what you are going through" and I know first hand they have no clue I just simply tell them " No you don't".
My husband generally goes nowhere unless I take him and I do try because he used to love to go. Visiting his parents or the kids is usually ok, but going shopping is virtually impossible. My WalMart just got wheelchairs with baskets across the fronts at my request. It's great if I can get my husband to sit in one because he cannot get out and wander and I don't have to keep one hand on him and the other on the cart. Lately he does not do well in crowds or with strangers and can only tolerate the younger grandchildren one at a time for sleepovers at our house. My most difficult times are when we have to abandon the shopping and leave because he is uncooperative. I can't stand the slack jawed gawkers when I have to fight to get him in the car. There have been times I have opened the car door and blocked him there for 30+ minutes until I could get him in. If he is really impossible, I put him in the back seat with child-locks on. People who seem genuinely concerned I will tell he has AD. The others....on a good day I will just say "excuse me". I assume there will come a day that I won't even try to take him out anymore, but not yet. Another issue I have is with public places that have no family bathrooms. I just don't go there.
Thank you for referring to this essay I haven't been reading here very long and haven't had time to read blogs from previous years. In fact I have very little time to read here at all. This article really expresses my feelings. We are older than the author we've been retired 15 years and have traveled and enjoyed our time together. He never strayed we never faced marital problems of that kind. My sisters who didn't have such faithful husbands used to comment how they could see we loved one another so much. So does that make this so much harder for me? He kept me feeling comfortable and safe. Now that is gone and I'm in a role I'm not prepared for and I'm really struggling. I just take a pill to sleep or I don't think I would and I have to have sleep or I'm a zombie. This is Monday and I'm facing another week of caregiving to my dear sweet husband who is becoming a stranger that I sometimes don't even like. I'm lonely and sad.
Flo, we love them and we really do like them. We just don't like the things they do. Same thing here. We have never strayed. Trust has never been an issue with us. I see twinklings of that person I knew and that is what keeps me going...a smile, a laugh, a snuggle. It doesn't really take so much to keep me going. I don't get very much sleep either, but I am afraid to take anything to help. His most difficult times are during the night. His seizures are at night. His myoclonus is early morning. Occasionally he will have to go to the bathroom during the night and I have to be there to get his pants down, get him situated, wipe him, and get his pants up. I also have to be there to steady him because his falls are mostly at night or early morning. I just figure when it's time, the Lord will take him and until then the Lord will never give me more than I can handle. Of course sometimes I think the Lord has more faith in me than I have in myself!