I have finally managed to pull myself together enough to write a new blog. I invite you to log onto the home page - www.thealzheimerspouse.com - and read it. I welcome all comments, suggestions, and advice. And thank you for your patience during this difficult time for me.
Of course we all know that AD is a terminal illness. YET-as the time nears I was not prepared. Yet again I had to put my personal feelings back in a box and do what must be done. I thought I had made all the arrangements and was ready. I had been with my husband during the day. When 'the call' came in the evening I was numb. Made calls only to my kids. Next day the madness began. So many people trying to help. Enough food brought to feed the neighborhood. Phone never stopped ringing. All through the funeral and the prayer days at home I was busy and distracted. Then-everyone went their own ways and I wandered through a quiet and empty house. Even though my poor husband had been on Hospice Care for four years and placed even before that the house felt different. There is no going back. It is four years later and I think I am doing well. As far as emotions-first anger at bad behavior without understanding why. Then fear of the unknown. Resignation followed. The long wait-finally admitting where we were heading. Now it is over. I lovingly wish the best to all of you.
I don't think your experience is that unusual, Joan. At a certain point, everyine on this site knows what is coming at us and we all see the light on that train getting closer. But as the light on our loved one's train comes closer, whether full speed ahead or slowing down to a crawl, we often don't react the way we thought we would given all of our "knowledge" about this horrible disease. The only explanation I can give is that we are human, and for those of us who have had a wonderful marriage and have been deeply in love with our spouses, we just don't initially want to accept the reality that we know we must eventually accept. We need some time to catch up with that reality. At least, I found that to be my experience as Clare has hit each new decline. That's why I didn't cut back sooner on my daily visit time until 2 weeks ago. Despite the obvious ill effects on my health, all I could focus on was that Clare "needed me" to be there as long as possible each day. But in the last 2 weeks Clare didn't even know that I had cut back my daily weekday visits from 4 hours to 90 minutes. It turned out that I was the one who needed that extra time with Clare ... not the other way around. Just hang in there, Joan. It is what it is.
As I read your blog I thought back to my sister. Her husband I believed had VaD. She put him in respite for a month so she could rest. Then she brought him home where it was not long before he took a turn for the worse and eventually died. She needed that respite to get her through his death.
You were about to join Sid in the nursing home but was able to place him and work to get some of your health back. I believe it has been your lifesaver for now. If you had not gotten some rest to improve your personal health, now would be near impossible. You were given the improved health as a gift to be able to handle what is to come. Just remember to continue to get your rest because if you are worn to a frazzle again, you will be no good to him or you.
Hello Joan, I have read your blogs several times, but until today I had not joined the blog. Not sure why maybe if I joined it would take me one step further down the dark road of dementia. My husband has Frontal Lobe dementia and has been diagnosed since June of 2002. 12 long years and 12 years of loss, reading your blogs I feel as if you have reached inside my head and heart and wrote down my feelings.
Today as I read your most recent blog my heart aches for you I wish I could say I have some wonderful advise for you, but I am sorry I do not. What I want to say is as I pray for answers for myself I will pray for you and hope you can fine some answer also.
May God bless you and give you the strength you need to get thru this.
We do not know each other but you are never far from my thoughts and prayers.
OH Joan, as hard as it is for me to talk right now, I read your blog and read about me. I had feared the most that I would have to watch him die. I did that. Making the decision to not save him sent me into an agony of NO NO NO NO he was ok just a few days ago. And then,,,I had to make the call. I feared how I would handle it after...and so far...I am not. I am using denial for now. Next week is his service, I know that will be a turning point.
I simply go in the yard and pull weeds, hour after hour.
But dear Joan, dear everyone, right before he passed, maybe 10 minutes before, I thought I would die it hurt so bad. But then...when he died....I could breathe again, and I did not die like I thought I would. There was a palpable sense of relief. Of course it was not easy, but I made it. Please Joan hang on, your Sid will truly be freed at the right time, and he will not have to be so sad anymore.
My heart aches for you, Joan. My situation with DH toward the end was somewhat different. He was 27 years older than me, but in relatively good health except for this blasted disease. He weighed 185 the last 3 months of his life - I weigh 100. Even though I could barely get him out of the hospital bed I had rented, could not get him in the shower, had to feed him most of the time, get him to the bathroom - yes, he wanted to 'do it myself', until the last 11 days. Yet, he did not qualify for hospice. I hired, or tried to hire, aides, had a little home health - but rarely did they show and were worthless when they did. I was dying, emotionally and physically the last 3 months. The morning I could not pull or push him to get him up, he didn't eat or drink all day and did not respond to me at all. Called his PCP and told him I was calling 911 to take him to the ER. Dr. insisted "he can't be that bad, I just saw him 2 months ago"! I told the doctor he had to do something or I was going to die before DH. He was admitted to the hospice wing of the hospital - only for 2 nights "to give you (me) some rest". A social worker was able to find a NH bed for him the next day - and he never responded to me again and died 13 days later.
During those 13 days, I told him over and over he could go, that it was okay, that I would be okay and he wouldn't be confused or in pain anymore. This may seem strange to some, but we had a wonderful almost 40 years together, he was my hero, my support, my lover, my husband. I loved him totally and he loved me. But it was time to let him go - both for him and for me. As Coco said above, when he drew his last breath, "I could breathe again". I did not die either. Oh, yes, the pain was and is still there; it will probably never go away completely, but it does lessen as time goes by.
Joan, I have no wisdom on this topic... (yet... to be sure) but yes we all know its coming. disbelief, shock, and such emotional sadness will be much a part of it. we know they can go at any time, but the internal belief is they will hang on and give us the needed time to adjust to whats coming. its never enough time. there is no preparing emotionally for this part of the journey. we must walk this walk very much alone as do our spouses when the end is near. but like many I think once the inevitable does happen, the internal knowing will come as a huge explosive relief at some point. ti then we endure the grief and knowing whats to come. so sorry to hear your Sid has spiraled. hoping you get that extra time. hugs divvi
Joan, I am just a mere 10 days away from the unexpected news a year ago. Unlike your doctors, I was NOT given any fair warning about how far advanced my husband's heart condition had become. As I have said in previous posts, I got the records after my husband died. In it, on the first night, had the doctor told me that if my husband were to" decline valve surgery or if in the end he could not go forward, he would need to consent to hospice care"....fine...read it in the notes...had he said something even though I would have only had a day, at least I would have been thinking about this subject. I went home Sat night a wife and was awakened at 0711 to be advised I was now a widow.
As unnerving as it is to have the doctors or facilities ask what funeral home you would prefer, it is homework we all need to do sooner rather than later especially for those of us whose spouse has other medical issues.
Sid's hospitalization, if I recall correctly, was a situation is similar to my husband's. It really is a blessing that someone was upfront with you about this sad issue so that you can be prepared. I was asked at least 5 times " what funeral home do you want us to call" and five times I told them I didn't know.....finally the nurses told me that the hospital had a contract with a local funeral home where my loved one could be held in preservation until I decide. Moreover, the funeral director of the facility I ended up selecting, told me that even when our LO is held in preservation, the time is of the essence for obvious reasons...In my case my husband was in preservation almost a full 3 days....and the funeral home did a super job BUT my husban's finger tips were black...they weren't when he left the hospital. I am sorry to be so graphic but often we are not told what to expect and I would hope to shield others from some of the surprises I had!
So PLEASE, EVERYONE WHO HAS A LO WITH THIS TERRIBLE DISEASE, TAKE CARE OF THIS DETAIL EARLY...DON'T WAIT UNTIL THERE IS A REAL CRISIS.... I was going along with a sense of things are stable when they were not!!! The moral of the story is press the doctors for as much information as you can, get straight answers and don't let them put you off...know how delicate your LOs really are when there are cardiac issues etc as well as ALZ. We just can't know enough soon enough. Had I but known what my study and homework and review of records have taught me earlier, I would have been at the hospital the last night of my husband's life and I would have been with him as he breathed his last. As is was he was surrounded by medical staff and NO FAMILY... how often do we read in the obits __________ surrounded by his family....and the comforting thought for our LO that it must have been....Yes I still carry the guilt about that...I regret it very much that he was alone with strangers and that I was not there with and for him.
Joan, I am so sorry. You have done your best and take comfort in that. Although we can't physically be with you I hope you can feel our thoughts and prayers for you. (((HUGS))).
Joan, We know the end is coming, but it is a vague image in our minds until someone tells us - it actually has arrived. You have found the strength to care for Sid for many years, and to make sure he is well cared for at his new home. I am confident you will find the strength to get through the "saying goodbye" stage that is looming. Cherish whatever time you have left with Sid. All you can do now is tell him you love him and be there to help comfort him at the end.
Saying goodbye to my husband was the hardest thing I have ever had to do in my life. The total sadness spread over me and I am still trying to fight it off almost two years later. It is unfortunate that no one can really help you get through this. Possibly the grief is as intimate as the love was in the relationship.
Mimi, in my 42 years as a nurse in several states and overseas I've been at many bedsides of a dying person with no loved ones there. The staff does step up to the plate and does their best to be right there and to be a comfort to the patient. I remember once when a staff member was saying, "Where's the family?" Another staff member said, "We are the family." And yes, doctors cry. Actually, we all do. But we are trained not to cry in front of the relatives when a patient dies, because we are supposed to be supporting them, not boo-hoo-ing about our own sadness. (Which can't compare to the family's.)
Having said that, I am so sorry that your LO was worse than you were informed, and went unexpectedly. But I'm sure he knew of your love and concern, and that you would have been there if you possibly could. We cannot always be with our loved ones at the end, but I truly believe that when they leave this world and enter the spiritual realm, that they are aware of how much we love and care about them. And I don't think you have anything to feel guilty about.
You are so right that it is a good idea to have funeral plans set up in advance. I've had DH's pre-planned since his really bad bout with pneumonia in 2011. While he was in the hospital I went down to the funeral home and set it up. I was frantically worried about him, and said to the funeral director that if I was that agitated when he was just sick and not expected to die, that I would be a total fruit loop basket case when he actually did die. So I set things up while I was able to make half-way-decent plans, because when he does die, assuming he goes first, there is no way I could deal with planning his funeral.
Like Elizabeth-as both a nurse and as an 11th hour volunteer for hospice I can tell you that no one can predict the time of a loved one's passing. Please don't ever feel not being with your loved one at the end. Most final moments are as gentle as a feather on a breeze.
Dear Joan. You asked for suggestions on how to get through this. Many wise folks have offered that here. All helpful to me too - thank you!
My thoughts - you are getting through this. Perhaps not in the way you would like. I think we all make our own way the best way we can. If that means we fall apart, we fall apart. I was so pleased to read you had people to fully support you. That is key.
And we are all here to do that too. I have written a million times, I do not know what I would do without all of you. I am so grateful with everyone's vivid sharing. Helps me to feel supported. I told my psychologist yesterday I would not have made it so far with this horrid disease without all of you. I shudder to think how folks managed prior to you starting this site Joan.
Let us walk this with you Joan. It is completely understandable you could not post in July. Glad to see you again and please keep us in the loop when you have the energy.
I am so sorry, Joan, for what you are going through....I believe no matter what we know or have read about this awful disease, or what others have told us, when we are actually going through it ourselves we can never be prepared....We can't ever prepare ourselves for how we will deal with our own loved one's passing; Please know we are all here for you as you have been for all of us. Love, Kathy
I really have nothing to offer, no advice, as I have not "been there" yet. Just letting you know how sorry I am that you are facing this (we all will, but your blog lets me know we are never emotionally prepared) & that I will keep you in my thoughts.
Joan - The only advice I have for you is to keep doing what you and all of us have been doing during this dementia journey.....putting one foot in front of the other. You and Sid are in my thoughts.
One thing I took from Joan’s blog was the apparent contradiction of knowing for years that her husband was terminally ill and then being unprepared for the idea that he might be close to death.
We can instinctively understand how someone can be unprepared when their spouse dies six months after a diagnosis of stage IV pancreatic cancer. But how can we Alzheimer’s spouses – who have known the inevitable result for so long – be unprepared? I wonder if it is the very length of time that we live with the details of this disease that insulates us from the ultimate reality. When our spouse is diagnosed, we are told they have a terminal illness. Then, instead of having to deal with the “terminal” part, we are forced to focus on the opposite – years and years and years of attending 24/7 to hundreds of details of living. So when the “terminal” part finally arrives, it comes as a shock.
After the years of watching our spouse go downhill gradually we get used to thinking that it won't happen today, or this week. We can't even visualize what will happen that finally will take him or her. Then suddenly something does and we are unprepared. I certainly never thought on Wednesday afternoon that he would be gone in 24 hours. The hospice aide who has tended him since last January was with me. After 3 big gasps he was gone. I said "this is it?" I didn't seem real.
We had visited my sister, gone to eat, nothing unusual at all. About midnight he got out of bed and I called 911 folks to put him back in bed - he was too restless and got out of bed again so I just covered him on the floor for the night. Next morning I called 911 again to take him to the E R as he was not responding. One week later the doctor told me I could bring him home and he would arrange hospice care he was gone one week later exactly. I think now I had held on to what I was reading here of those who had been living for 5 to 10 years and he had only been diagnosed for two years so ok he was not himself but he was here and still had years left. So when the end came so suddenly I was not in any way ready. But then I never would have been ready to give him up even with his dementia. I've just completed a Grief Share class again and I found myself envying those whose loved ones knew them to the end while mine knew me but that's about all he knew. Dear Joan, there is nothing I can add except knowing it is a lonely road and that we all know is ours to travel. My thoughts and prayers are with you. You have helped me so much and I hope we all can now help you. My love to you, Flo
I just lost my husband, Bruce, on Wednesday unexpectedly. After 13 years of relative stability (he had a rare type of vascular dementia), Bruce began to decline rapidly last summer. Within a six-week period he lost his ability to walk, swallow, or be continent. By June of this year, his failing brain had almost completely imprisoned him: he was almost unable to move, his hands and neck were affected by severe contractures, and his speech was limited to one-word replies. It has been a terrible thing to witness and I have often felt powerless to help him.
For many months, I have prayed that Bruce would be released, but feared that his suffering would go on forever. After my visit on Monday, I had almost asked for a referral to hospice, but the social worker wasn't in. Tuesday night the nursing home called to let me know that my husband's vital signs had changed; he had been put on oxygen and seemed comfortable. Early Wednesday morning I received another call: the nurse said that he was sorry but that Bruce was now unresponsive. When I arrived at 9 AM and saw that his breathing was gasping and his extremities were cold, I knew that Bruce was dying. He didn't seem to react my voice or touch, (or to the tech drawing blood), but I believe that he knew that I had come. He died at 11 AM while I was waiting outside for a friend to arrive. I watched the priest administer Last Rites and then said my good-byes. In death, Bruce's face looked peaceful and so many years younger than his 62 years.
Mostly the whole thing just didn't seem real: I didn't feel sad or relieved or anything but shocked. I believe that it was a blessing that Bruce died so peacefully when he dud. I tell myself that finally the nightmare is OVER: that he is now free and I am free. I cry a bit at odd times: when flowers arrive or when I read an old note.
Your extraordinary strength will carry you through this but I will add my prayers for you both as well.
Dear Joan, I am so very sorry to read about Sid’s decline and the torment you are going through. You have done everything in your power, and it’s now in God’s hands. I don’t have any advice that I can give you – just support, and to let you know that I am thinking of you and Sid, and wishing you strength for the days and months ahead. My DHs problems began in early 2007, and he was diagnosed in 2009. Like you and the other spouses here, I have been trying to cope with the loss of someone who was my rock, the one place where I knew I could find comfort and support no matter what the problem. To now see the decline in his physical and mental capacities, the confusion, the fear, the depression is devastating. He knows who I am, but not my name … he asks what our relationship is … when I say we’re married, and have been together for a long, long time, he shows relief and says “Now I feel better … that’s good!” He’s afraid that I won’t be there. He can remember nothing of our life until I remind him, and then he ‘seems’ to remember some of it. It is so difficult for him to express himself – words fail him, and it is very stressful for him. Like Nikki, I have felt it necessary to be there every day -7-9 hours. Until now, I arrive after lunch, and he cries when he sees me, and says “Where were you … I waited and waited”. We spend the day together, taking him for walks in his wheelchair, or sitting in the park and listening to music on our MP3 players. Music is so soothing. The PSWs have been very supportive, and say that he is slowly settling in, but around lunchtime each day he becomes agitated, afraid that I won’t come. They keep reassuring him that I will be there soon. Some have said I should take time off – others tell me it is too soon. I have to go by own instincts and hang in for a while yet … it is the right thing for us right now. I know I have been fortunate, in that he has never shown any aggression – he certainly respected his views and could be assertive, but now he is like a small child, trusting me, no matter what I say or ask … he will do anything I ask him to, without question. He seems to find comfort knowing I am there. For me, the lack of aggression has been a gift. I know the time is coming, and I dread it, but I think, also, that I will feel relief that he is released from the pain of this disease - no longer so fearful and confused – he knows, and has told me that ‘something is wrong with me’. I only hope, as you do, that I will be there with him, if he passes first. You have reminded me that, although our papers are in order, I have never thought of final arrangements. What I am trying to say, Joan, is that I don’t know how I could have coped until now without this website, the advice and support have helped more than I can express. Hopefully you can find comfort knowing that we are all thinking and supporting you and Sid.
Dear Joan, I have been thinking a great deal about you these days, as my 1 year anniversary comes closer.
You have ALWAYS been a great source of strength for all of us on this site. How much greater a strength you have been for your dear Sid. You are an amazing woman and leader! I think all of us who have followed your saga from coping with your father's illness and Sid's too,at the same time, hold you in high esteem and often wonder where you did get such strength! You do have it.
I am hoping your beloved Sid is stable now and that you can take a breath and be with him as much as you can. He will always know you love him and he does know how dearly you have cared for him, the anguish at placement and the worry in general.
We are all here for you and we are keeping you and Sid and your family in thought and prayer for strength and calm. Everyone's arms are around you!♥
Elizabeth and Bluedaze*, Thanks for your words of support and comfort. The nurses at the hospital were all in tears when I got there...my DH was such a sweetie that even though his stay was short, shall we say, he was always full of cooperation with everything needing done, and he maintained his sense of humor ( when the lab gal would come by he would just stick out his arm...) that they grew close to him. I have seen patients be kind of nasty to nurses so I think when one is considerate in return the nurses just bond in a special way with that patient. So it was as hard for them as me in a way.
Myrtle posted an interesting observation about how can we be so immune to the idea of terminal illness with this dreaded variety of dementia..but someone said it well...we see our LO advance sometimes more quickly than others but for some of us, it does go at a slower pace. Additionally, we become, I think, sometimes more focused on the dementia issue and worse, sometime the manifiestation of dementia can be present in other diseases as well so we miss it ( in the case maybe of eating or activity levels etc) thinking it is the dementia when it really is more specific to an ancillary disease that is present. So we miss it and unless our medical professionals are truly up front with the spouse ( meaning caregiver) about the changes etc. we can find ourselves unprepared and ill advised...Knowledge is power. I thought my hubby was going along fairly well...he wasn't and I was not fully aware. Hence my warning to " take care of business as someone else mentioned, because in a situation like mine, your thinking is not as clear as otherwise and as sad and hard as this is, as it would have been otherwise. What is the saying about hind sight? We think, as I suppose I did, that " this is a situation I won't find myself in" until...you do.
Felicia, I am so sorry about your husband Bruce’s death on Wednesday. We would say of any other man who died at 62, “He was much too young,” but this disease makes old people out of us all. As abby* said on another thread, “Goodness and potential lost forever and beyond restoration.”
After 13 years of suffering and his rapid decline last summer, I can fully understand why you prayed that he would be released. I would have done the same. I hope that after awhile you will be able to go on.
Felicia - Please accept my understanding thoughts for the loss of your Dear Bruce. It sounds much like my husband's passing, I didn't think it would really happen when it did. After 10 years (or 13) you just get so used to the way things are. Take care of yourself, he's OK now. Betty
Joan - I wish I had some fresh brilliant comforting words of wisdom, but they've all been said already. Oh, I think we are prepared, cognitively, but reality is easier to bear with denial. I swam in that river many times. I send you the standard 'You are Not Alone,' but I know that does not make your personal grief any easier, after all, it is Your Sid and nothing can measure that loss for you. Betty
Joan,I am sorry you have reached this phase of this horrible journey. I thought I had it all figured out as to how I would handle the end of the journey two years ago when four doctors gave my DH two to three weeks to live after they drugged him in to a coma during a hospital stay for dehydration. They did not want him to get up and walk when walking and eating are his only skills remaining. He was weaned off the drugs after he was moved to hospice and then to the NH where he remains, still walking and eating. After the move to hospice my DS and I planned the funeral and went through a period of intense emotional grief. If he passes before I do I feel like I will have to go through it twice and my feelings may be completely different the second time. I try to convince myself that it is all in the hands of a higher power and I have no control. Everyone will cope the best way that feels right for them and there is probably no two of us alike. No matter when the end comes for me or DH in our small world the sun will come up and the birds will be singing the day after. I just hope it doesn't take me too long to notice that sun and hear those birds because life must go on. Sending hugs to you and we will be here to comfort you every step of the way just as you have been here for us, with love and understanding .
Joan, All I can say is it is not easy. But somehow we all find the strength to get through it. When he passed, the thought that kept me going was that my DH is in a better place. I could never get him back, so for him to be no longer in pain or have fear was what got me through it all. I still miss him so much.
I am starting to remember the good times, that was something that had left my mind. So to be able to remember the fun and happy DH is so welcoming. My life will never be the same, but being with him made me a better person.
You will get through this, we are all here for you.
Joan, I am so sorry that you and Sid have reached this part of the journey, I think the hardest by far. No matter how much they decline, we're never really prepared to lose them. I have no magical words to ease your pain during this very difficult time, but I do know you are a very strong and courageous woman who has helped so many while we travel this horrendous road. I am hoping knowing that you have made a difference in so many lives will help bring you some comfort now.
I can't begin to express how much your support means to me. I thank all of you many times over. Whenever I think I need a counselor, I come here and receive more help and support than any counselor has ever given me.
After a huge mental decline, Sid is more or less stable, and now we just wait. I guess you could say that I am now as prepared as I am going to be.
Glad to read that you are feeling a little better, and that Sid's decline has leveled off. Make sure you get rest and eat right so you don't wear yourself out. I will continue to keep you both in my prayers.
Oh Joan, You and Sid are in my heart and in my prayers . Your pain and grief is palpable and my heart breaks for you. Please know so many of us care for your. This blog has been my light and beacon and you have been so strong and so faithful to the love you have for Sid. This disease kills more than just the person affected with it, we all die as our loved one disappears. I send you love and a hug and please know so manat of us love you and your strength, honesty and grace. Jenny
I am so glad, Joan, that you now have a chance to catch your breath a bit. It is such a difficult time right now and yet every day, as I know you appreciate, is a gift. You are an amazing lady. You make Sid so proud, somehow I think he knows this.
Joan, this is so incredibly hard. Unlike most of you, I did not read all the material available on Alzheimer's. My thinking was that it was pointless. I guess that was stupid and I never, ever accepted that I couldn't change it. That is something I would urge all of the new people on this website to do. Perhaps most are not as stubborn as I am. I am sorry Joan. I don't think there is any preparing for this end. There is no choice and I guess that is what makes all of this so hard. You know that when it comes, you will deal with it as best you can. My thoughts and prayers are with you.
Felicia, I am sorry about the loss of your husband. I think when Gord died I was just in disbelief. It is so hard to watch someone just stop breathing. The memory is no easier almost 3 years later. Please accept my condolences.