I invite you to log onto the home page - www.thealzheimerspouse.com - and read today's blog. Please add to my list of positives from your own Alzheimer journey.
Oh Joan, YES! I too think that we have to try to find SOME positives, but for each of us it will be different. Some of my positives are: The Veterans Home is only 10 minutes away so I go & visit him almost everyday. He still usually recognizes me & when I kiss him he calls me beautiful & tells me I'm a great lady (although last night that brought me to tears & I left there sobbing!) He is getting great care at the Veterans Home. The aids are kind & loving towards him & treat me like family (a few even call me “Mom”.) Our children go & visit him when they can. He doesn't recognize them & they could use that as an excuse to NOT visit him, but they still go. I count my many blessings because I know that if I focused on the negatives I would be a basket case.
The only positive I can see right now is that DH will go to DC 3 hrs. each day, M-F. Weekends are the worse. It's tough when you have no family close by; all my friends work, and his friend have all passed away. I'll keep looking for those positives, though.
The only thing that is getting me through these past 5 Sundays since I lost Ozzie is knowing that he will not descend into the truly awful stages of ALZ. He knew his friends, he was not in need of Depends, did not need to be fed or helped in the shower...pushed to do things yes, and forgetful of appointments or day of the week, month even, but there was so much he could still do. He was DX with pneumonia and hypoxia and was being treated for " walking pneumonia" as he had no previous symptoms...but on Sunday the 11th Aug he was taken with a cardiac arrest. He had what is known as PEA ( pulseless electric activity) which means it was difficult to find a pulse but the telemetry equipment showed cardiac activity so full on CPR was given but was not successful.... I miss him, his smile, his jokes, everything but knowing he was blessed in not facing the indignities of ALZ helps me get through these days.
Right now it is very difficult for me to find anything positive in the Alzhheimer journey, because we are in the most difficult phase of the disease, when anything resembling a normal life has to be put on hold. But if I had to list anything, it is how wonderfully supportive my neighbors have been in filling in to sit with my DH while I run errands and go to appointments or to church. I had a doctor's appointment in the city on Friday morning last week, and it just happened that all of the neighbors were busy, so I hired a caregiver (the one who comes every other week for my respite time). Well, that cost me $100 because I was gone for 5 hours. This certainly puts into perspective the value of what the neighbors give me willingly and without asking for compensation!
Joan, the main positive that I repeat to myself continuously is 'he does not need anti-anxiety meds in the ALF'. That is huge for me. He is calm and content. He is not afraid or depressed. When I am so sad and lonely, when my heart breaks with his absence, both in person and in personality, I just remember that he is content - and I thank God for that.
I would like to call you're attention to a positive that you may have missed.
We all know that you are a great writer, and we all know that great writing requires great thinking.
As we grow older, especially older like me, We value thinking more and more. I'm not very good at it myself. Also as caregivers who have seen thinking vanish in our loved ones, The ability to think becomes a treasure worth more than gold.
There are some great writers and thinkers who contribute to this site, but Joan, you are the LEADER OF THE PACK. I can't think of anything more positive than that... GeorgieBoy
Hi Joan. Yes it is hard to focus on the positives. Since placing my husband I see 2 big ones though. One is he is seeing more of his kids than when he was home so they are now more involved in his care. Also now when I go I can be present and much of my anger and frustration are gone.
Since my husbands death, I realize my positives. I had his love and support for all those years. He had a wonderful life, he loved his work, he loved his retirement and most of all he loved me. AD was not a positive, but we did it. Our memories are so wonderful of our life together. That is my biggest positive. I keep those in mind as I try to move forward with my life. Carol
It is so hard to see the positive when every day seems to bring another loss of function. DH knows I am a familiar person but he has lost the concept of relationship. Doesn't know the kids but they understand. Most of them are out of state.
I can't lose sight of the fact that dh is still mobile, has no medications to take (up to this point) and can still put on his clothes properly. Incontinence is getting more serious but that was expected. DH was 87 last month. The memories are mine alone, dh has none.
I suppose the biggest positive is that this horrible disease has most likely made me a better and patient person. I certainly turn to a higher power more often for guidance and perseverance.
I guess today could count as a positive - through this board I have met, on line, many wonderful people. Today I had lunch and spent a few hours with one. Some of you may remember Frand, whose husband died a few years ago. She is in Maine now and joined me for lunch and a drive through Acadia National Park. Without AD and this board I would not have met her.
Ocallie36...yes I am glad you reminded me of something..I need to amend my remarks above to include all the wonderful memories I do have our our 36+ years..There are so many for which to be grateful and I am and when I think of them, while it makes me very wistful, it makes me smile too...so thanks for that gentle nudge you didn't know you provided... Hugs to you..
One great positive for me is that in spite of being diagnosed with bladder cancer in 1990, after surgery and his return to work, he retired in 1993. Then we started traveling and went somewhere every year until 6 years ago. My attitude was that we'd better go while we could because you never know when something will happen so you can't. So I have lots of great memories though he has none.
She loved me and we lived most of our lives together. I remember her and now deeper genuine details such as her voice in my mind. Love for her brings my favorite memories of us. The hardest thing I've ever done I did for her. I endure great heartache without distortion for the truth of our love. I keep her mother's violets alive and blooming for her just as she did for her mother. I have her things. I have our things. I open drawers that fill the room with her lavender. I have pictures of her and of us laughing. I have people in her family that care about me as family. I speak to friends who couldn't help us but share my pain for her. My heart again enjoys seeing people in love. I can feel the joy in being me again. I have hopes for my own future. I now know I have strong character and that I can break and mend. I know the anger and resentment are wrong and fight them. I'm glad to be here at all. I laugh at things and tell stories. I have greater depth though it is at the cost of former comfort. I have lost my fear of death, suffering, or anything my future holds. I listen to and watch life around me again. I love to feel the sun on me. I love how only I can make the perfect coffee. I sleep where I want when I want. I get up when I want. I go where I want. I know myself in ways I never dreamed I would experience (or wanted to but...) I met people who gave freely to me in my darkest hours of need. I have made new friends, opened new doors to old friends, and thrown some out. I accept it's me that goes on and she is spared that hard experience. I don't accept that getting this disease or not getting it means anything. She doesn't know a lifelong friend has died of cancer and another is fighting it. I'm ok with who I am.
(I'll never really accept losing her and I don't want this life I have to face; but, reality is complex and I'm staying true to what I believe. I evolve as life transorms or I am a prisoner of my past. I'm no longer in highschool. I'm no longer on the basketball court. I'm no longer the sharp young kid. I'm no longer young. I'm no longer working. I'm no longer a couple. One day I just won't be any longer at all; but, not just yet.)
We haven't gotten to the real rough part. He tells me over and over he loves me, when he is over being mean, he says he's sorry, doesn't know why he was. He understands some of what's ahead and I think he wants to be sure I know his feelings. It's hard to see him slipping away. Bonnie
Joan, I think you are pretty amazing! Just wanted to make sure you knew that ♥
Georgieboy and Wolf, I just loved both of your responses!
I could fill several journals with details of what I am grateful for, even while in the midst of the most ferocious battles we endured during our time in war with Alzheimer's.
I think if one is able to see the positive, not just with Alzheimer's but all adversity in life, has a lot to do with the makeup of individuals. Please understand I don't mean that as a dig at those who are unable to see beyond the pain. (right now) I get it! I do completely understand that sometimes the pain and loss is simply overwhelming and we become consumed in the grief. I have been there, I have lived there......
I am not little Miss Mary Sunshine pretending the world is full of only wonderful things sprinkled with magical pixie dust. I know only too well that it isn't. But I also know that though every single person in this world has faced some sort of tragedy, that does not diminish the absolutely beautiful gifts we are given daily.. if we only try to look for them.
I have an edge that helped me through our Alzheimer's hell that some people don't, I am in excruciating pain every single day and have been since 1999. Now that might seem like a horrible thing, but pain does change you, and it has changed me for the better. Through the years of working on ways to cope, I learned a great deal about appreciating the "little things". (which I have come to understand are actually the "Big things") I always tell my friends and family if they have suffered and have not come out a better person for it, then they didn't suffer enough. I do not mean that to sound flippant, it is simply my belief through experience. (not just mine, but all people who face tragedy)
Every night before I go to bed I place on my nightstand my TENS unit (transcutaneous electrical nerve stimulation) and my NES unit (Neuromuscular Electrical Stimulator) and I put my medicine in the drawer for easy reach. In the morning, before I can lift my head from the pillow, I must take my medicine and hook myself up to these machines for a minimum of 20-30 minutes. If I don't, I either vomit or black out from pain.
I am but human and there was a time that I spent that time I was hooked up to those machines crying my heart out and wondering what kind of life I could possibly live in that kind of daily pain. But, we do learn to cope, we adjust and adapt... just as we must with Alzheimer's.
I truthfully tell you that for years and years now I have used that time to count my blessings. I call it my attitude of gratitude, because if you can see some positive does depend on ones attitude and outlook. Without fail, even when the suffering of life seemed impossible, if I tried, I could find at least one thing to be thankful for. Being able to have that mindset made everything seem just a little bit better.
For those of you who are consumed in the grief right now, I hope it brings you hope that so many of us not only survived but have found our way back to ourselves and to a level of happiness we are content with. Perhaps it would help your mindset to not think about a positive in only Alzheimer's (because yes that can be so difficult!!!), try to think of any positive in all aspects of your life.
If you are in a funk, that is perfectly normal, we have all been there...... My heart aches for you! It will help so much to try to have a little sunshine in your life. To find that silver lining, even if you have to paint it your damn self!
I hope this is read the way I intended. Not preaching, just sharing and hoping to bring comfort ((hugs))
Wolf and Nikki and others who have posted here, One of the greatest gifts a person can give others is to share his/her wisdom borne of suffering and love. Not all people are at the same stage in this journey so their ability to understand and connect with what you say may or may not resonate at this time. The beauty of this forum is that your lovely writing that digs deep into your soul of pain and love - that writing is preserved like cave drawings for all who come after. It takes a certain self-effacement to be able to share such intimate and painful knowledge and a definite clarity distilled with time and reflection.
As others have mentioned, reading back through posts is a great tool in learning what we are facing. The shared factual knowledge is encyclopedic, but in reading these historical posts one comes to know others, their particular situation, mindset, and psychic pain very well. This IS a scary journey. But seeing other lanterns bobbing ahead in the dark does two things: it reminds us that we are not alone and it shows us that others have made it further along the path than where we currently are.
And so we come to gratitude. The swirling chaos that some of us are currently in obliterates most gratitude. We need to be reminded to take a deep breath and stop for a moment and contemplate not our suffering, which seems always there, but our gratitude. It is a balancing act. I'm not very good at it right now. But I do try when things are bad to find a nugget of gratitude. It is like learning a new good habit. You have to prompt yourself to do it for at least six weeks before it will become reflexive. And, granted, it is a reflex that can be squashed with sorrow at times. But a little CPR and some more prompting and it will come back to life. And here is the best part: being inspired by others, as in this post, is like O2 tanks to mountain climbers - it gives us a desperately needed boost for the climb.
Passion is as contagious as blue funks. Just remembering that we have a choice in this life (maybe not the choices we WANT to have) but we do have choices as Nikki points out, gives us power over the grief and anger and sadness that wants to drown us. It is a simple lesson from a monstrous situation.
The wisdom in these posts is breathtaking. I love your analogy of cave drawings Marche. Wolf your list is my list. For some reason, the one of that Diane does not know about your friend that passed of cancer, really struck me. And the violets.
There is just too much to say about all of the posts. Except one more, that Nikki, maybe it is pixie dust that is helping you through.
For all the positive sides, the becoming a better person, the being more empathetic to suffering, the feeling better about myself, I wish there was a way to keep from getting so blue sometimes.
Marche I enjoyed your whole post, each analogy had me vividly picturing what you were describing. It was all great! This is the part I work on daily " It is a balancing act. I'm not very good at it right now. But I do try when things are bad to find a nugget of gratitude. It is like learning a new good habit. You have to prompt yourself to do it for at least six weeks before it will become reflexive. And, granted, it is a reflex that can be squashed with sorrow at times. But a little CPR and some more prompting and it will come back to life." ...
I almost came back on last night and deleted my post, because I remember crystal clear how deeply my sorrow was, how crippling the loneliness felt, how overwhelming it is to be consumed in the grief.. and I didn't want anyone to read what I had written as somehow belittling their pain. I truly do understand that there are times when it is a struggle to find even one positive. Sometimes it is simply impossible.
I know I spent too much time wondering and worrying about my state of depression. When my doctor told me if I wasn't depressed, THEN he would be worried, it put things in a better perspective for me. We are suppose to feel these overwhelming raw emotions when dealing with these monumental losses and grief. It hurts, unbelievably so. We all get blue at times, we wouldn't be human if we didn't. As far as I have come in the healing process I still have days where I could just weep all day long. And that is perfectly understandable and allow myself to do so.
Be gentle with yourselves, we all do the very best we can at any given moment. ((hugs))
As I read these posts, Over and over again I hear the message of adversity being a positive. I hear...... ....Adversity builds strength. ....If life was a bowl of cherries it would not be worth living. ....Without bad times there would be no good times. It brings to my mind this little poem which still causes me to do a lot of thinking about what I want out of life.
By Edwin Arlington Robinson (1869-1935)
Whenever Richard Cory went downtown, We people on the pavement looked at him. He was a gentleman from sole to crown. Clean favored and imperially slim. And he was always quietly arrayed. And he was always human when he talked, But still he fluttered pulses when he said, "Good morning," and he glittered when he walked. And he was rich -- yes richer than a king, And admirably schooled in every grace. In fine, we thought that he was everything To make us wish that we were in his place. So on we worked and waited for the light. And went without the meat, and cursed the bread. And Richard Cory, one calm summer night, Went home and put a bullet through his head.
Not much positive here for the past couple of weeks. DH fell out of bed; had to call 911 to get him up. Thought all was well until 3 hrs. later when he could barely walk, leaning to the right, neck and head hurting. Doctor said take to ER; tests and x-rays showed nothing. Home again, but now he can't go upstairs to the bedroom. Called VA, they ordered a hospital bed - won't be here untilTues. Rented one myself from a local med.supply, and they brought it out that afternoon (Thurs.)! Then my handy man came over and moved my den furniture out to the dining room and brought me a twin bed to sleep on downstairs as well. Called Hospice Sat. and they came out Sat. afternoon - of course, he doesn't qualify yet, which didn't surprise me. Going to try to get home health to come in to bathe him. So many changes in such a short time!
Vickie, so sorry to hear of your dear husbands fall. it can happen so quickly. you did all the right things of course, and at least the xrays showed nothing broken, maybe just bruised. internal bruises can be painful too so maybe over some time he will recoup to where he was. its good that you moved downstairs - there seems to be parts of our own homes we wont use anymore when it gets down to where hospice comes in. they and we are confined to much smaller limitations to areas. wishing you better news soon and lots of hugs. divvi
Hope that today is a better day for you both. You always tick every box, in the excellent care of your DH. I have followed your story for a long time now and you continue to inspire me. You do so much without any support and you always do so with such grace. I salute you, Vickie.
Thanks to you all. Don't know what I'd do without all of you. You are my support. Now if poor Millie would decide where she wants to sleep! She always slept with us in our bed - now she has to choose!
Awww Vickie, so sorry to hear about this. I am glad nothing is broken but imagine he must be in some pain. Poor bugger ((hugs)) And poor Millie too, she must be so confused. As always you have handled these swift changes like a trooper. ((more hugs for you))
I'm sorry to hear more hardships heaped upon you both. Even poor.Millie has lost her bed, it's an adjustment for the whole family, but you have each other. Thinking of you, Bonnie
aww poor little millie. I always say our pets go thru this disease right along with us. they have to deal with the challenges as well. Vickie I am sure if you hug her lots she will get into bed with you soon. it will take her a bit of time to figure out the change.