I have been doing a lot of thinking. Not always a good thing lol. But, in this particular case it was. I was told Lynn was now firmly in late stage Alzheimer's, stage 7. I guess I did know this, I mean I did have to place him in a nursing home... but, I don't know... wondering and thinking he may be, is very different than being told he is. It hit me hard.
It dawned on me that he is not the only one who has gone through the stages of this damn disease. I too have suffered with every new loss that each stage brought. Loss after compounding loss. Inch by devastating inch I have lost the man who was my everything. Now, we are in the last stage of our journey. I know what that means for Lynn, I wasn't so sure what that meant for me. All I am certain of is I am not ready to lose my precious husband.
But I already have haven't I? I knew I had lost parts of him, each loss another blow to my already broken heart. He still knows I am important to him, and he is still able to tell me how much he loves me. Each day he tells me I am his whole world. He has always told me that, and it still warms my heart to this day. But, sadly, now.. I am his whole world. All that he has left, all he can recall of the wonderful life he lived, of the people he use to love so deeply.
He is blissfully unaware of all he has lost. If there can be a blessing in Alzheimer's, that is surly it. He is happy in his little world. It brings me great comfort that he is finally at peace. If only God would allow him to stay just as he is, I would wish to hang onto him for as long as I could. Even knowing what is possible in our future from this point on.. I know, I will never, ever, be ready to let the love of my life go.
But I am ready to let go of the heavy chains I placed upon myself to keep me weighted down in the misery of suffering. I was talking with my family and as I mentioned in another post, Alzheimer's claimed most of my 30's. Those years are just gone! I haven't felt "alive" is so long! I am now 42, and ready to face what stage 7 means to me.
Lynn is at peace and I have placed him in God's hands. I will continue to visit him and take care of him. And I know I will forever carry our love in my heart. Now that I am not consumed in the daily stress and not drowning in the overwhelming grief, I can see clearly now what I couldn't before. Lynn loved me with all he was, even in late stage he remembers that love. He would not want me to waste any more of my life suffering. If he could, he would kick me square in the butt for ever letting AD claim so much of me!
It is a choice, that is what I have come to realize. I can come home after every visit and drown in the loneliness and suffocate in reliving over and over just how much I have lost. I have every right to just that. But, I also can choose to live a life that brings me happiness, fulfillment, joy and laughter. It truly IS up to me. I think I am ready to try to be happy again. Oh there will be many more tears and heartache, but I don't have to let it destroy me any longer.
I am at a crossroad. I have a lot happening in my life, and a lot of changes occurring. I am seeing doctors to finally take care of my health issues that I had to put on hold to take care of Lynn. I haven't slept more than 15-20 minutes at a time due to pain in years! I have neurological issues that stem from nerves in my brain that cause horrific pain in my whole facial area as well as all over my head. I just can't lay my head back without an attack. My doctors have told me of another surgery that could help with my pain. I decided, I am ready to take the risks involved. I have the first of several surgeries on Jan 7th. I am nervous, but excited at the possibilities too!
My sister who lives with me has found a new love, and she and the kids will be moving out. I am so happy for all of them!! But I am also a bit nervous. I have never in my life lived alone. I was one of 7 children and I am use to having lots of people around me. Even when I moved out and had my own apartment, I had several room mates. Then I married Lynn. Being on my own, living alone, I have to admit the idea is frightening, but also exhilarating.
I feel much like I did at 18, finishing school and wondering what I was going to do with my life. Except now I am 42! I can't make any plans until after my surgeries, but I have decided I am going to start painting again. I use to love to paint! I already contacted an art studio and I plan to take some classes this Spring. Other than that, no plans... but the possibilities seem endless. I am a mix of feeling afraid and feeling excited. Much better than depressed and hopeless!
Nikki, its wonderful you have this new outlook. many long years have been awarded to AD and alot of it was during the prime years of our lives. those times are gone but theres still lots of happiness out there and memories to be made. i know exactly what you are saying. i see the words Hospice next to my name and can see that i wrote that post but mentally i cant seem to associate those two names together side by side-. just too hard to comtemplate that the 'later' is now sooner. worse than that its not just one of us its happening to. its all of us here who are affected -its like a moving escalator and we start at the bottom and as the years roll by we move closer to the top. where you are on the escalator now is very close to getting off. and i am right behind you. and many more of our friends behind us. i said it before you get haughty and AD slaps you back in to reality-- that stings harder than the slap. i am sure you will be a wonderful painter. and your final dedication to Lynn is taking care of yourself now. a dear friend said this week. "hear me roaaaaarr' i hear you! divvi
Nikki, my husband is also in late stage 7 with Hospice, but he is at home except for 5 days a month when he goes to Hospice Hospital for my respite.
I feel as you do, except it is my 60s and not my 30s. I still have a lot of living to do and plan on continuing to work and to travel.
I will also be living alone for the first time in my life after my husband dies. I won't know what to do! But, I'll figure it out. First, I'll have time to grieve for Diane more. It still hits me every day, but I have to keep going and can't give in to it.
Divvi is right - you will be a wonderful painter. Your love for Lynn has always been first in your life and it shows in every word you write.
Dear one, please keep us posted on your surgery and know that you are in our thoughts and prayers.
Ah, Nikki, you have reached the top of the mountain....when you look back you can see all that went before...the good, the bad, the wonderful, the sad. Now you can look forward...down the other side of the mountain....there is some fog there and you can't see it all clearly, but there are glimpses of what is to be. There is laughter, happiness, opportunities and amazing views to be seen.
You have done it.....you beat the dragon I call Alzheimer's Disease. When you realize that you have fought the good fight and battled with all your might and you are still standing it is an amazing feeling.
This is not to say you won't have bad days or that the sorrow is over....but you are looking forward and you have a plan.....I am so happy for you.
You are so young to go through this Nikki. I'm glad Lynn is at peace and that you have found a new peace. There are still a lot of living for you and I know there will be lots of possibilities out there for you!
Nikki, my dear friend I am so happy for you, take one step at a time, that`s what I`m doing, it gets hard at times but like I said before there is a light at the end of the tunnel or in your case over the mountain, my kindred friend we have fought the good fight now it is our turn to live, give your love what ever you can but take the time to love yourself. Gail
Nikki, you have given us a gift of yourself and a road map to follow as this journey goes on. I agree with all the posts written above. I love all of you.
Nikki, you always write such beautiful things. You have more strength and love than a lot of us. I'm praying that your surgery will go well. Please keep us posted about it.
Like Nikki and divvi I'm at a crossroads. I've found a safe day care for my husband and I've decided to send him. I've found a volunteer agency who will provide me with a couple of hours of additional respite once a week or once every other week, which will also get my husband used to other people being in the house, and I've found someone to clean my house and I'm calling her tomorrow to set up the first visit. The day care also has a nursing home attached where they do short term emergency (and probably respite) stays. I'll be contacting them after he starts day care. And the caseworker gave me the information for several hospice organizations. Too soon for that, but one of them wants you to call them as soon as you get a terminal diagnosis, so I'll call them in January.
Since none if it has actually started yet and since I still have quite a few things to put into place before that first day of day care, I'm not quite at the top of any hills, but I can almost see the top of this particular one.
Nikki, I am so glad to see that you are choosing to take steps to go on with your life. God Bless you. I will say some prayers for your surgery. Much love to you.
Jane my husband is profound but stable. It is amazing that he is still here. Barely opens his eyes and sometimes feeds himself a pureed diet. That is on a good day.
bluedaze, I have a relative whose mother -in-law as been as Sandi's husband was, she has been in stage 7, bedridden for 3 years and still no sign of actively dying. This disease amazes me and also has taught me.
I know, Jane....I remember when we thought my husband was "checking out" in 2003 and he lived another five years. You just never know....he was healthy as a horse except for the AD.
Nikki, I'm so very proud of and happy for you that you've been able to reach this point. It would make your Lynn happy. Taking steps into an unknown future isn't easy, but it has the potential to be a very positive experience. Please keep your cyber family posted on how things are going. We love you.
Starling, I know you've been struggling with feeling isolated. It's such a good thing that you've got some day care, respite care and housecleaning help lined up. Wow! Keep your eyes on those hilltops. Won't it be great to be looking down from the top for a change?
I do know that stage 7 can last for years, in fact, I am counting on it. I know for some of you, you can't imagine why I would want this journey to continue. Simply put, Lynn has finally reached a place where he is content and at peace. He is cheerful and even happy in his own little world. For the first time in over a decade, I have peace.
I have been thinking about this a lot..... I never understood why families would carry on the lives of severe comma or worse, "brain dead" loved ones. Now I can. They just can't let them go! They are not ready to face a world in which their loved ones are no longer with them. I would never want Lynn to be in pain, or suffer. Right now, he isn't. He is blissfully unaware of all he has lost. He is as happy as an Alzheimer's patient can be. He is still able to talk, hold my hand, hug me, watch tv with me, laugh and smile.... I want to hold onto to him for as long as I possibly can. Of course if he declines in ways that he is suffering, my outlook will change...
But, I can't think about what might happen. I can't lose any more of my today’s, in fear of an unknown future! Only God knows what is in store for Lynn. I can't change Lynn's future. But, I CAN change mine.
Thank you, all of you! For your support and words of comfort and encouragement ♥ My stomach has butterflies in it most of the time. But, it is better than the ulcers I use to have! lol I AM very anxious and nervous. These are some major life changes! But, I just have this feeling that my life is just beginning anew. It is hard to explain, but it is so freeing to be released from the hell, the consuming grief.
The Eagles have a song I have always loved, and it is very fitting in this instance.... Already Gone
Well I know it wasn't you who held me down Heaven knows it wasn't you who set me free So often times it happens that we live our lives in chains And we never even know we have the key.
I had the key all along, I just chose not to use it. Now, I am ready. I will continue to visit with Lynn and treasure our time together. I will hold our love in my heart forever. While doing so, I am going to build a new life for me. I know this is what Lynn would want for me.
((sandi*)) "Ah, Nikki, you have reached the top of the mountain....when you look back you can see all that went before...the good, the bad, the wonderful, the sad. Now you can look forward...down the other side of the mountain....there is some fog there and you can't see it all clearly, but there are glimpses of what is to be. "
That is exactly how I feel! It was an exhausting long hard struggle,! And you are right, it IS an amazing feeling!
Nikki, I am having a hard time understanding how they are calling Lynn late stage 7, if he is still able to talk, watch TV etc. especially the talking, I understood that being able to speak only 6 words was the beginning of stage 7, at least that is what Hospice told me. I am still learning.
I do love ♥ the way you are now thinking, I do think that is how we should all start thinking else this disease will consume each and every one of us.
Nikki: you are thinking in all the right directions..You are being very realistic...Your love for Lynn is beautiful..that will never change..but Life goes on. I wish you luck with your surgery, I have a feeling that Your Life will change, and all for the better... Keep on being positive...We are all learning from you...Hugs, Rosalie
Jane, I do know there are different sub-stages to all 7 stages. It depends on what your doctor, or agencies use. The nursing home and hospice we have uses the stage 7 with subcategories A-D. Lynn can't recite the Gettysburg address! But he can still say I love you. He can't carry on a conversation. I took a course on how to speak to an AD patient. I do believe it has made a difference. For instance, no background noises such as the TV, always make direct eye contact, always be warm and friendly, smile and be encouraging.. etc etc.. It HAS made a difference in being able to "communicate" with him. An "I love you" now, means the world to me.
These stages are guidelines. We have heard a million times, "if you have seen one AD patient, you have seen ONE AD patient." Lynn was evaluated by hospice and two doctors. At his care plan meeting they told me due to his decline, they now categories him as stage 7. It is just a number to me. I can see the declines, my heart knows them all too well. Stage 6, stage 7, it matters squat to me. I am trying to pick up the pieces, and carry on......
Thanks, Nikki, rotated 90 degrees counterclockwise, it is a heart or an ice cream cone. Rotated clockwise, it could be a bust. All very nice. :-) <----rotate clockwise 90 degrees.
New Realm, that's my problem, too. Nikki says to use <3 to indicate a heart (on it's side), but it is a rather poor substitute for the real thing. You can find them in a word processor, but then I can't find a way to get from one of those files to this comment, like you can by copying and pasteing via the scratch, or note, pad. I guess we're just s.....d.
I've read some very wise posts here that I hope I'll remember when we're farther along the journey. And thanks for the "map for emoticoms" or whatever they're called. I gotta write 'em down someplace.
Nikki, Yes I am familiar with all the sub stages of stage 7, we are in sub stage 7b, however when you said late stage 7 that made me wonder especially when he can say "I love you." my husband cannot even do that and has not been classified LATE stage 7. My husband cannot watch TV, cannot speak, is incontinent, cannot feed himself etc, in otherwords he is completely and totally helpless. The sub stages are what they are and are important. They may not mean anything to you as far as how you handle the illness and I understand that, but to me they are important in at least knowing how far we have to go yet. Late stage 7 would be much further along than my husband is now.
Jane-your husband and mine are pretty much at the same stage. I suppose what comes next is the inability to remain in a sitting position without maximum support..I really haven't been concerned with numbers but would appreciate your input.
bluedaze, the sub stages go all the way to G as I am sure you already know. Our husbands do sound like they are close in the stages. My husband is already starting to lean when he sits, he leans to the right and I have to always be sure he has support when sitting. The numbers do not concern me either it is just that it allows you to at least know what to expect next so as not to be caught at such a loss as to why it is happening, in the beginning of the disease when I knew nothing all the changes alarmed me, now with the staging I can half way know what to expect next.
bluedaze, I have not read through all the threads you have posted but I am thinking your husband can no longer walk at all, am I correct????? My husband can still ambulate but only with my help. He would sit right down in the middle of the floor if I were not there to guide him and we have to be close to a place to sit or it will happen in spite of all I can do. I look for total mobility to go next with us. We are in stage 7b and next comes the walking, all the way down to stage 7D would be what I would call LATE stage, and even that would not be the last stages which can also last a long time.
Most patients do not live through all of stage 7 sub stages but mine is on the mark to do just that, just like Sandi's husband that is how we will be I am sure because there is absolutely NO physical condition other than the Alzheimer.
bluedaze is your husband at home or in a facility???? as I said, I have not kept up with everyone and their stages, there are so many on the board and I only read a few threads each week.
Jane my husband is in a dementia only facility in the next town. Care is excellant-especially as they know I am watching. I am often greeted before I even enter the door by staff giving me updates. My husband can ambulate only with max assist. If it was up to the hospice nurse he would be on bed rest (horrible term) when his legs swell. I insist he be in a recliner in the activity room. If he opens his eyes only for an instant I want there to be something for him to see. He is non verbal. This could go on forever. If you would care to contact me I will post a temporary address.
Bluedaze and Jane, i so sympathize with you both. i thought we too were in latter stages of 7 but neuro says not yet. maybe 7A now. still can ambulate and answer if asked short questions and able to feed himself but mainly incontinent as well. our fears are that our spouses continue to decline into these latter phases of stage 7 at a much slower pace. Jane we can see you are a devoted caregiver to your DH. we are here to hold your hand thruout however long it is to the other side. bluedaze you both have been strong women, those of us following can only hope to follow your examples. my best and hugs to each of you. divvi
I don't understand how anyone can diagnose into the subdivisions. I was told my DH was in Severe stage - early in the spring. He has had to have support to keep from falling over in his chair - for a year now. The symptoms just overlap so much. My DH has limited vocal, is continent and knows everybody and the year, etc. He is also healthy except for Parkenism with AD and VD. Perhaps the overlapping of the diseases makes a difference. He is barely able to walk with my assistance and a walker the last 2 days. I think he will become immobile before long and I don't know what I will do then. Right now it is all I can do to walk him to the bathroom. He feeds himself partially and appetite is good.
Imor, by the time he is immobile you maybe could have Hospice. They would help you with the Hoyer lift to help move him. I have been researching through some of the Nursing Homes here and a lot of the homes use the Viking total care lift. It is battery powered and works by remote so that you can have both hands on the patient as it lifts and lowers. my problem will be getting the sling onto my husband if I can't pull and push on him. The lift cost is around $3,000. The ones that Hospice provides are not battery powered, they are usually manual.
Imhor, I do believe having other illness does make a difference in how doctors stage our loved one. It makes sense that other conditions would have an effect.
Jane, I am sorry your husband is so far along in the disease. I didn't say Lynn was in late stage 7. What I said was "late stage Alzheimer's, stage 7" Some peoples doctors dont even use the 7 stages, they only use the 3. And that is why I used the late stage, as well as stage 7. Lynn is in the earlier stages of stage 7. I didn't mean to confuse anyone and I am sorry if it did.
I also didn't mean to offend anyone about the stages and substages or imply they weren't important. I was only trying to express and share where I am in this journey. My husband is gone. I am just trying to find a way to survive.
Wow, this is really bothering me. I came here to share. To receive and offer support and encouragement. I have been in such a bad place for so long, and I finally have found some peace. I only wanted to share that as Sandi* said, "I have reached the top of the mountain" That things were getting better for Lynn, and therefore, for me.
I didn't mean this thread to turn into a debate over stages. I didn't diagnose Lynn, his doctors did. The whole point of this thread was not about what stage Lynn was in, or to debate stages.. It was to express that I am not longer consumed and drowning in grief.... it was to share where I am in this journey and to hopefully give others hope ...
And now I feel I have to defend myself, and/or what stage Lynn's doctors have diagnosed him. And somehow, that just doesn't seem right to me. I am truly sorry so many of our spouses are so far along in their decline. It is heartbreaking and my heart aches for all of us.
I am going to take a break, I just have too much going on in my life right now .. and this has really got me down. accccck
My email is in my profile and I am on facebook. Much love ♥
Nikki, of course you don't have to defend yourself, you know by long experience I'm sure how these discussions tend to get sidetracked by people going into detail on all kinds of issues that concern them at that moment.
You certainly HAVE shared your new thoughts about being a step further into a new life and YES you have given others hope. Please stay with us.
My DH was accepted by Hospice on Friday. The Nurse just asked about the walking and I told her how he was and she didn't ask to see him walk. He will be reevaluated in 90 days and like you said he needs to show decline and that won't be a problem.
Nikki, Oh No, do not take me wrong, I did not mean to offend you in any way. I was only trying to figure out and stage my own situation from your post. And YES, you are correct, you did not say Lynn had been diagnosed LATE STAGE 7, I am the one at fault, I read the post incorrect, and from there started trying to see where we were in the stages if your husband's doctor was saying he was LATE stage. My fault and please forgive me. At any rate it was not meant to offend only to compare what Doctors call late stage and where I am in this process.
I would never ever want you to leave the forum because of me.