Kathryn has had three declines this year. One when my father passed on Feb. 20th another when she was in the hospital for two days. Both of these stopped and she seemed to hold there. But about a month and a half ago she started declining for no reason anyone could tell. She started having problems walking, talking, smiling, controling her emotions, incontience both ways, swallowing, I can no longer finish what she is trying to say for her and she can't tell me what she needs or wants, one day I almost pulled over and called 911 becaause it appeared she was having trouble breathing and so on. Her doctor was very concerned and stated she had never seen anyone decline this suddenly. I realy thought I was going to lose her any day. It was so bad that one day I felt I just wanted to go to the beach lay on the sand and cease to exsist for a couple of hours. I had never felt so completely overhelmed in my life. My heart hurt my throat hurt it got so dry and I felt like I was going to break down and cry right there while driving. Then I got really pissed. I took Kathryn to the doctor and asked the doctor to order every kind of theripist there was that might be able to help. I now have a physical, speech and occupational theripist for Kathry, I told my work that either I could work four hours a day or I would retire.
I now work four hours a day at home and four at work. I have a trained Granny Nanny that comes in five hours a day while I work, and she is great, she helps kathryn in the shower and the other day even arranged to have her hair, finger and toe nails done. Kathryn has all three threipist that now work with her. She is walking again and more responsive amnd happier. She was not started on any new meds. Her speech problems are not going to get better and the other declines she has will remain. She is now all stage six and a little stage seven. None of this has slowed down the disease but it has retruned a little of her quality of life.
The one big differance is that I now know ahe will die. That one day she will no longer be here. I rolled over in bed the other night and all I could think of was that one day I would roll over and she will not be there. This stuff has been going through my head several times a day. We got married 11 years ago on Nov. 11th of this year. We were both 48 and we were going to grow old together. That is not going to happen. None of this is right. Even sitting here typing my heart hurts so much.
When my Father passed away it throught it was more than I could stand. I cannot imagine how anyone survives the lost of their spouse. I cannot see my life without her.
Dear Jim, this is a very hard time for you and one that I've been through. I will keep you both in my heart and prayers. Even though it is anguish to see the one your love decline like this, I hope that you will take time to pace and take care of yourself. You are important, too, and have life yet to live.
jim, i am so sorry she has been declining. as we know we are never really prepared for the turmoil we feel when the times come prior to our being ready. which is never. i know there is nothing anyone can say to appease the heart but know your friends here care and understand your feelings. we all must face this horrible time sooner or later. divvi
Jim - sorry for the declines. I admire you for demanding the doctor do what is possible to improve her quality of life she has left. You know you can't stop the inevitable, but you are making what time is left as best for her as you can. (((Jim)))) for you
Oh Jim I cry with you as you picture yourself sobbing at the beach. I am SO sorry for your pain. I also love my honey so much, it hurts too deep doesn't it.
I am having a little prayer for you if you don't mind, that you will find comfort in some small thing. (or a big one) (((((jim)))))))
Charlotte, I really didn't have to demand. We have been very lucky with Kathryn's doctor. Her doctor calls us at night sometimes to see how we are doing. She has done this since the beginning. I simply asked and she made the order for me. Both the doctor and hospice have told me to do my best the enjoy the coming holidays with Kathryn as much as we can. Since she is doing a little better that is what I am planning. Traveling is now a thing of the past. She just had a birthday but I don't know if she knew what it was all about or not. In the next two months we have our aniversary, Thanksgiving, my birthday and Christmas. I think we will keep them as simple as we can here at home together.
Thank you for the prayers Coco. I have many freinds that offer to put her on their prayer list and I tell them all please do. That it would be great if they would pray for Kathryn and just ask that what ever is best for her be done.
Anchor20 I can relate to your feelings as my DW passed just over one month ago. I do not look forward to anything just deal with today and let whatever comes later just happen. I have no plans for the future because my future was changed when she passed. My only consolation is that I know she is in a better place and is no longer suffering. That is what keeps me going forward. They tell me that in time the pain will lessen but as of right now it is still fresh and painful. Just remember you are not alone and coming here to this site and reading what others who are going thru makes you realize that sharing your feelings somehow helps in the healing process. May God bless you with His grace and help you to heal. Bruce
I know what you are going thru and it is difficult to say the least, I have been thinking about the loss of my DW too. The struggle of just making it thru the day seems to be too much at times. It does seem that not a day goes by that she does not smile, and that keeps me going. Everyone dies, just wish we could have a choice in the process.
I see changes in my DH too though not as intense as yours have been.IT is so scary to see these things and try to figure out what to do and when...I hope you can enjoy a nice calm next couple of months and have some pleasant time with one another, that being with no additional challenges... I know what you mean about the holidays..should we or shouldn't we put up the tree etc...but who knows...seeing the tree may just bring a big ol smile to the LOs face even if there is no connection..it will be something pretty to look at..
Jim as many have said before, I feel your pain and have no answers. I also have a spouse that is declining rapidly. I also think many of the thoughts you are having. All I can suggest is give it to your Higher Power. Even though that does not always work, I know that is how I will make it thru in the end. Moment by moment we are all dealing with the next decline. It is a heavy load. Just remember, none of us are alone,,,,, we have all our cyber family. Turn to us, cry, scream, rant, rave,,,,, whatever it takes to help you. I know this is the beginning of the end for your spouses and we have to take care of ourselves so we can do the best for them. Take care, pray, and take it one minute at a time.
It seemed that Kathryn was continuing to make a little more of a come back on Saturday. She smiled and I gave her a ride in a golf cart so she could look at the flowers. Things seemed a little better but Sunday morning she seemed to have another decline and Sunday was a bad day for her. I take her out to breakfast every Sunday to get her out of the house. We went accross the street to Sam's club so she could walk some in the store while I picked up a couple of items we needed. She suddenly needed to go to the bathroom and I got her there just in time. I had to do some clean up, both her and the rest room and got her home to clean more. She became very upset at the store but I was able to calm her some and it looked like everything was over when she started to cry. She cried for almost an hour really hard and then just stopped instantly like a valve had been turned off. Now she seems far more confused and shows no facial expressions it seemed almost like she is having no thoughts at all. She just walks around the living room and bed room all day. I did finally get her to go to bed and she is still asleep at this time.
Thanks for everything you all do on here. It helps.
jim if you havent already, maybe a check for a urinary tract infection may be a good thing to do. sometimes these changes are a connection to infection sometimes not. hoping she has a better day.
I hear you very clearly. Dianne just turned 60 and somewhere very late 6 and early 7. She can hardly walk at all any more and I related very strongly with your feelings and the thoughts that go through our minds in bed. We slept together for 40 years and I'm coming up on my first anniversary of sleeping alone. There are so many of these painful steps and the ones that hurt me the most are when I had to stop taking her grocery shopping with me. We would wait for a minute or two while she tried to move from the white square to the beige square on the floor. I had a route that avoided much of that but it became too much for her. The first time I went by myself I suddenly noticed that I was walking. I had gotten smaller and smaller over the 2 to 3 years before coming to that point that when I walked back to a different aisle because I remembered I needed peanut butter, I rediscovered a full stride. I've been retired for 8 years and it was a shock to realize how much I'd shrunk to fit into the world I now live in which I realize is keeping my little redhead safe.
The professionals around me have been encouraging me to think about putting her into a home and in truth I am worn down quite hard; but, it all inexorably moves to it's own rhythm and finality and it is becoming more dangerous to keep her here. There is nothing in the living room but a couch, a loveseat, and a chair. The coffee table had glass and she bumped her shins and all things get picked up and moved. All stoppers have been taken out of all sinks. The kichen sink is barred by two chairs. All creams, tubes, glass, trinkets, and so many things she loved are put away. But yesterday I noticed a dark spot next to her eye and realized she had fallen somewhere and when I touched it to examine the purple a quarter inch from her eye, she flinched and said clear as a bell 'it hurts I fell down".
I took her off all meds over 5 months ago and while she's more aggitated now (not upset but busy), she came out of her zombie state and began speaking again and patting the cats and very occassionally a perfectly normal and contextual sentence comes out.
She's in there. She tells me she loves me constantly which was the one thing she said during the zombie med period and says that to no one else. I'm not putting her anywhere until it's either too dangerous (she can hurt herself in a nursing home too), or I really do try to strangle myself one day because I'm so beat up and hurt by all this. The day will come where I know it's the right thing to do and even though I'm long past any reasonable limits on wear and tear, I'm no different from anyone else here.
I'm so tired of this I could spit blood but on that last day in that last hour if my own mind still works, I will expire knowing what I did and why. I have years ahead of me and it's disrespectful of the life we've been given to not live it whether I'm ever happy again or not. But I still have miles to go before this disease has had it's way and she is at peace.
If other's are like I am, they are harsh on themselves because of the mistakes, weaknesses, thoughts, or times the hardship got the better of them. Don't. It's a far better thing we're doing now than possibly we have ever done in our life.
yes, this brought tears to my eyes and heart. Jim, and Wolf, what an incredible example of fine men you are, any woman would be the luckiest to have had you in their lives.
And, it makes me even more "proud" of myself, and hopeful, that I had definetely made the right decision to put my lovely man first, and me second. Despite the hardships, in some way, I can feel the smiling of the angels when they see such love.
Just made my day. Knowing that there are such kind people in this nutty world.
Wolf, it is amazing how closely we are alike in this. Kathryn just turned 60 last Tuesday and I will turn 60 on the 26th of this month. Kathryn is full stage six if you look at the Fisher clinical stages and very early stage 7. We do still sleep in the same bed but not together. A while back she put some pillows between us and I have let them stay there. If it makes her more comfortable I am OK with it. Even with the pillows I can still roll over and see her there and that makes me feel better. But I know now there will come a day when she will not be there. I am still taking Kathryn groccery shopping and even go to Publix a couple of times a week so she can walk a little for exercise (she is very comfortable there). However it appears that also may be about to come to an end before to long. The physical theripist helps but It only last a day or two and then she is right back to the slow suffle again.
I have had Hospice ask to reevaluate her several times but I have not had that done. It scares me they may say it is time for her to be in their facility. I will know when I can no longer provide her the care she needs and that is when I will place her. That will not happen until she meets my requirements for placement which are she does not know where she is, who I am and I am unable to provide for her medical needs. Any thing less and I will keep her right here with me no matter what it takes. We have scaled down a lot. I had built an attached apartment for my Father after my mother passed away ( he liked to call it his granny pad). We now stay in it because it is smaller ( my Father passed on Feb 20th of this year) and I can see her no matter where she is in it plus she can stand in the middle of it and see the bed room and bath room which was good at the time we moved into it. Now she can't remember about a bathroom even if she is standing in it.
Kathryn is still on her meds. I am not sure they are doing any good but as long as they are doing no harm I will leave her on them.
As long as kathryn is happy it is easier to deal with it and right now she is as happy as a 60 year old toddle can be.
I am sorry you are dealing with this too Wolf but it does help to talk with someone in the same boat.
Ditto to Bama's and Coco's comments. Such good husbands. Your wives picked well. May you both find the strength and grace you need to care for your loved ones. Bless you both.
There's a lot of great women here too and whether we're talkers or not (I am), we're all going through pretty much the same thing. Men are quite capable of compassion and love whether we sound like it or not although I do agree with calling women the 'compassionate sex'. Men didn't give birth to life, or nurse babies at their breast (we have them but they don't work), or have hormones and chemicals that kick in specifically to make the female protect the young. All of that happens to women in the real world and that changes you. On top of that as I've argued numerous times, we are taught to be our role. Boys are told to be strong and girls are told to be pretty - less so today.
None of this is fair to either sex on this board. What it illustrates is one of the many things we do not talk about much which is that men don't last the way women do. I would estimate the split at more than 95/5 which would be 19 women on this board for every male. Part of that is explained by the above which is that males would tend less to seek out a place like this while women would; but, that wouldn't come close to explaining it.
And this isn't representative of what's happening outside of Alzheimer's which is that any male who lasts into old age knows there are tons of women around and every women knows there's a serious shortage of men - but not in these kinds of ratios. It has to mean that men get AD earlier than women do or more than they do or both.
The challenges of the AD spouse are well covered here. The challenges of the transition of the individual are not. They are not discussed here. or by the societies, or by the medical profession. Society itself is not structured this way which is why there is no real development of the person in school systems. We make you useful to us - not useful to yourself. Which is understandable.
That rubber hits the road here in a forceful if slow process which is that while you have been whatever you were in whatever roles you played out in life so far - it's only if you have a strong religious belief or philisophical view or a routine person that you might be equipped to some degree.
Very few people make huge changes in their lives voluntarily. Moving to another state to get a different job or getting a divorce are big changes. There isn't that much information available about the well being of people that happened to. The vast majority just go on with their changed lives apparently. Or more accurately once again there isn't sufficient interest by society to know these answers because it hasn't been identified as being useful enough.
That's true here too. We give our condolences (heartfelt), and you get an asterik beside your name. But the topic is surviving Alzheimer's and there aren't many threads active that include surviving after Alzheimers.
Yet in fundamental ways that should be a serious focus. It is part of the lifecycle of AD and is about that part which survives AD.
Well that's about the individual Wolf, not Alzheimer's. Not it isn't. It's post Alzheimer's. The only reason you have to face a new life is Alzheimer's and any support you get without that is a message we all suffer silently which is that we aren't important enough to have support - only that we survive.
We are offered reasonable support during Alzheimer's. There are numerous ways in which society tries to offer something depending on our financial status, citizenship, and programs we enrolled in. From medications, to physicians, hospice, medicare, medicaid, nursing homes, and more. Once the patient dies we are offered nothing, and during this period we are offered anti-depressents. Close to nothing because that keeps the caregiver going and presents a challenge later.
If caregivers were focused, we would be draining everybody with an asterik of what they're going through, how it feels, what is helping. And we would be helping them find what is helping. For an excellent reason. We are all going to be there. Every single one of us. But we don't have the cycles. We are overburdened as a norm.
There is an opportunity here to improve society even though there is no shortage of self help books already. Or at least there may be. This is where I'm watching closely because it's happening to me so I'm going to live it first person. Some may feel that generally post Alzheimer's people get on with their lives just as post divorce people do which is a thought I would need a lot of convincing about.
Once my wife is settled into a nursing home you can mark that I will begin opening threads geared at asterik and preparing for asterik topics because I won't be just trying to survive the day anymore like watching my wife take her bedsheet for a walk and then notice her eyelid has blood in it which is now a bright yellow shiner or getting up for the third time in the middle of the night or any of the other things. I will be back in control of time and one step closer to my own asterik. There's a decent chance I might transition from going to write a book to having written one after I get it.
I believe it is the nature of this that many survivors are left in a dichotomy. What they feel is the opposite of what they have proven they are. Think of it as a 'where's Waldo?' book.
There have been over 10 of us (maybe 15) who have lost our spice in the last year. Several of us e-mail each other, about our feelings, our numbness, our relief, our pain.....and then we talk about what to do with all that extra time on our hands...how to fill it and rebuild our lives.....then we talk about putting the insurance on the house and cars in our names only, making certain that we have taken care of all the financial issues, etc.
Then we talk about redoing the bedrooms so that the room becomes ours - less heartbreak each night. Some remodel, some re-decorate....some move. Trying to help ourselves cope.
We grieve at different rates too. Some seem to cope at first, but have trouble later - others seem to grieve more than a year before they can start rebuilding their lives. Others, like me, are on a rollercoaster of emotions...some days are great, some days filled with good memories, some days filled with sadness.
Except for the top discussion group here at Joan's which a lot of us use, there are no other topics for widows/widowers - some need to get away from here for a while. Some stay here to help out when needed - to continue to give advice and help those still struggling as a caregiver. Most of us still read here, in case we are needed.
We lost our spice while they were still alive, but we still had a part of them with us. It is a different kind of grief and loss when they are gone.
mary - have you thought of starting a Facebook page like we have for the azspouse? I am glad you have this connection with each other afterwards. Wolf is right on.
Wolf- After reading your blog, I applaud you for keeping your dw with you. I strongly encourage it, but realize that it is a very very difficult thing to do...I was blessed by both my children being there, and I must say that there were days when it took all 3 of us to handle the situation. Wolf--you pose some interesting thoughts, and if there is anything I can offer to help you, well..you have my address. I sometimes wish I could erase the asterisk...
There have been some things that I would have liked to ask a spouse that has lost their loved one but I felt like it would only be adding more pain to an already difficult time they are dealing with and it just seems to me that it would wrong. I know that you would take the time to help in any way you could Phranque and I admire that. I feel the same way. My problem, and it may be a guy thing or maybe it is just the way I was raised. I am much better at providing help than I am at asking for it.I don't think it's pride, it is just something in me that is a very strong part of me. I would get down on my knees and beg for help for Kathryn if I had to but it is deeply engrained in me to pave my own path. I hope I am saying this right so everybody understands what I am trying to say.
I do think that a discussion on surrviving after the passing of your Loved One would be a good thing.
I don't come on and talk a lot but I do read everything posted on here and I have gained a lot of knowledge form it. If I see something I think I may be able to provide something helpful I post, otherwise I am a sideliner.
I can't say enough about all the good everyone does on here. I really beleive that you all are amazing people to go though what you do and to still be so willing to help each other is a truly great thing.
In the "sticky" Widows/Widowers thread at the top of this page, those whose spouses have died, do discuss how they are surviving and coping. Maybe it would help you to read through it.