This has kept creeping up in my mind this week. That my husband has a Terminal Illness. I know & have known that advanced dementia is a terminal illness, however, for some reason this week I just keep thinking about it. I look over at my husband in his recliner either watching T.V. or sleeping & try to envision what it will be like when he is no longer sitting there. I don't like this feeling, and try to not think about it, however, it just keeps coming back. What are your thoughts on this?
Kadee-good question. I keep telling myself that I have done my grieving as the man I have been married to for almost 50 years is gone. But still I know I am not prepared for the finality of death.
All dementia is terminal. It is one of the shocks about this disease because people don't know it until it hits them in the face. And it doesn't help that until you accept that it is a terminal disease you can't quite make the decisions that have to be made.
On another support group there was a woman who was suffering very badly because of her mother's condition and the inability of her nursing home to really take care of her. From the descriptions of what was going on it was pretty obvious to me that her mother was in late stage 7 dementia, but there had never been a diagnosis of dementia. I kept suggesting that she call in Hospice, but since her mother wasn't in the last couple of weeks of life she didn't know or understand that her mother had a terminal illness and had reached the point where hospice was appropriate. Finally the nursing home brought in hospice for an evaluation, and, of course, her mother was at the point where that was appropriate and she began to get the one on one care she needed.
The real problem was that no one had ever told this woman that her mother was dying. Or that she had Vascular Dementia (of the classic big stroke kind). Or, if they had told her, she wasn't listening.
Someone who found out my husband had AD made the comment that at least he didn't have cancer. I told them I would rather it be cancer because then he would have a chance. I find myself tearing up when I look at him and it hits me that he will not always be there as I once thought. At times it seems so distant and then suddenly I feel a panic knowing it will eventually happen..my heart goes out to you.
I have a lot of faith and as my husband has gone each step of this horrible journey, I have been ready for him to take the next step. I fight it and cry and rail against it, but I am ready for it. I do trust that things will work out for what is right and best - just not so sure I understand why he has to suffer so to get there.
Sandy D, my husband will tell me "at least I don't have cancer or something like that." He hasn't done the research that I have and doesn't realize this is fatal. I don't want to tell him. In this case, I think maybe igorance is bliss.
Dazed, my husband calmly told his neurologist that he knew he did not have it because he felt fine and felt normal. The neurologist spent over an hour going over all the testing and was so patient with him. We walked out of the visit and my husband made the comment "I think he was just pacifying me- he thinks he is right but I know he is not" I wanted to cry. However, I must admit, ignorance can be bliss...someone said the nice thing about senility was you never new when you get there but I do think they know at times and it must be so frightening..I so want to protect him from it..Thanks everyone for being there.
I know that our prognosis says "terminal", but our "hope" continues to say...maybe, just maybe, God will decide this is NOT His plan for us...i continue to have this hope, and will...
one of the problems with my dh is that he actually knows he is really bad and that he is going to die. he keeps asking me how long? the dr from the memory center said this was unusual to be in the condition he is in and yet realize that he is in bad condition. his depression is great. he is on meds for this but i think they are going to have to be adjusted again. he gets so upset when we go to the dr. he just cries his heart out. it is heartbreaking. jav
I have no hope. The only thing I pray for is an easy exit.
Well, I do have hope that they will find a cure for this thing, or group of things, and that we are the last generation of caregivers to go through this.
My husband never did admit he had anything wrong with him...When he could no longer do a task he would just turn it over to me and I would either be able to complete the task or get someone else to do it for us. My three sons took him to breakfast one Sat. after the diagnosis and explained to him what was wrong with him, they were compltetely candid and held nothing back. He didn't ask any questions, did not discuss Alzheimers with them, but later told my daughter in law that the family thought he had memory problems but he didn't think so. He hated to go for periodic cognitive testing and would say, "They are stupid and give me stupid questions". However he would always go willingly with us to any medical appointment we took him to. Now of course, he cannot communicate and I don't really know what he can think.
My DH keeps saying "I don't think I am so bad,,do you?" I always tell him "no, you aren't really bad". But, if I try and tell him he can't do something he just turns his head away from me and won't look at me. He also keeps saying "I'm going to fight this thing" and I just say "good for you". He has been very mellow the last 2 weeks which makes me less stressful. But, I am like Starling, I have no hope and lets get this over with.
Mac knows he has ALZ but thinks he won't get really bad. Maybe he won't but I am not betting on it. What bothers me is how he looks on his sister who's ALZ is much worse. He thinks she is "acting" on some of the things she says and does. We are supposed to go see her next month so we'll see how that goes. He thinks you can just "talk to her" and get her calmed down. I've tried to tell him to just let her go on about whatever. Now why would I tell him that when I know he won't remember!!!!!
I have been thinking & re-thinking....hard on my brain, however, I think I have figured out why terminal illness keeps coming back. I remember around the middle of July, Frand was driving the RV numerous miles home, her husband needed gallbladder surgery. Now he is gone less than a month later. Everything can happen so fast. I don't think he even had the surgery. Sorry, I am just very sad today. I just keep thinking about Frand.
Kandee,I keep thinking about fran and beenthere too. I was looking at Lynn at lunch, so thin his ribs are showing....... but he can still walk on his own and talk. And there is still a smile for me and an I love you. I am in no hurry for the end
i was changing DH shirt yesterday and saw his shoulders are rail thin and no muscle practically left at all. its gutwrenching. hes so thin now too although he eats all day and vitamins. Frands loss brings it all too close for us here, knowing the finality of it all and in our minds that it can come all too soon. i feel this will happen to us over and over, each time one of us loses our dear one. its not an individual loss anymore for any of us here but a communal one, which makes for heavy hearts in the future. divvi
I was doing okay with the "terminal" part because I didn't think about it. As I have said numerous times, I either take one day at a time, or I'll go completely crazy.
Then frand's dicussion topic on her husband dying in addition to the emotional stress of the last month hit me like a ton of bricks. I kept picturing my husband in frand's husband's condition, and the pain and tears would not stop. That is after the pain and tears of the verbal and emotional abuse I have been subjected to this month.
I know what is coming. Now I am putting it back where it was - out of mind. I can't dwell on it. I'm just going to keep on trying to cope with what each day brings. That may not work for all, but I can't function any other way.
Oh, and to add my 2 cents about the cancer - no one has to tell me how horrible that is. I watched my mother, aunt, and an uncle, die slow, painful, horendous deaths from cancer. I never thought anything could be worse. I now think AD is worse.
Oh, for sure, AD is worse. Cancer doesn't have all the personality changes, etc. I have been through it, and it is 2 people grieving together, and frightened together. There is still the togetherness. I can't tell you the number of times I walked my 2 mile walk each day in tears with the cancer. We beat the cancer, but this is much worse. I then wondered what I would do without him, now I wonder what I will do with him.
Frand's loss just brought the whole 'terminal' thing into focus. I notice this morning when I was applying DH's Exelon patch how thin his shoulers are. He always had such a marvelous physique. I like to remember those days. I have a photo of him in his ATS uniform when he was 19 years old. Ah, yes--those were the days.
The reason I first posted on this board, was because Lynn has declined so horribly that our doctor felt the need to remind me it was fatal, and I didn't have to treat infections etc. I was floored. For me at least, I was able to put it on the back burner more, when he was doing better. Now facing late 6 with early 7 stages, it is starring me brutally in the face every single day. His decline in body, just can't be ignored. He is literally wasting away. Though he still eats well! he is now down to 120. (fully clothed with shoes on) It scares the hell out of me.
I have always heard how Alzheimer’s can last years and years in these later stages. I just don’t see how that is possible at the rate he is wasting away. After 3 years of pure hell, with the Seroquel ….I JUST got part of “my Lynn” back. I am not letting it go without a fight. I know, I can’t fight it… but I have to try… *sigh
My father died from cancer six months after being diagnosed. I believe that cancer is an easier road because it seems to be over quicker and your loved one is there with you mentally and emotionally almost to the end. It has been over a year and a half since my husband was diagnosed, and I knew it a year before that. My husband told one of our sons prior to my suspicion of AD that he was dying! Not the diagnosis of AD, but just that he was dying. How HE knew that early, we have no idea.
My husband has totally given up and doesn't so anything for himself any more. We are barely making it and have to go for help with medicines for me thru a community program. Each month you have to have an interview for changes in income (which never changes) and this last time,the interviewer talked about how sad our situation is. Ireplied that I wish we would have had a diagnosis of cancer for my husband instead of the AD,because there would have been the at least we had a little of glimmer of hope. She put her head down and told me that the month previous she herself had been diagnosed with lung cancer and was having surgery three days from the day I was there. She is a volunteer there for the map program and said she had thought about not working that day and that something had brought her to work that day. She said she felt it was our destiny to meet and she understood how I felt and could see the despair of this journey on my face. I have prayed for her, have not been able to find anything out yet as all you get a recording when I call to check on her. I have prayed and prayed for her,put her on the church prayer list. I never felt so small and so tall at the same time as I did that day. My heart bled for her but at the same time I had to say,my husband is dying, too young and too soon into our life together.
I am so angry right. I am ready to walk away with the shirt on my back and go into a home myself. I am tired of dealing with an uncaring public, so tired of being judge by my husbands acts, so guilt ridden with what I haven't been able to obtain for us. So angry we don't have the money to have to deal with this so far before we should have. I am 52 and I feel 100 or older. I love the man I married so much and I am so alone every day, even with him at my side. I said before that I thought the cymbalta had took away my feelings, oh the tears are pouring tonight. I never want to deal with this disease again ... these issues again. And no one will let me grieve. If I hear head up little one again I think I will step in front of a speeding truck.
Terminal can happen at any age I know, but we lose so much more. We lose the soul of the person so much sooner. And we have no hope like chemo or surgery.
Thank you for letting me vent, its been such a rough day and I am at my own last straw.
Magnoliarose, I'm so sorry that one of us can't be there right now for you. Some of the best help I received was a caring person who brought a bottle of wine and a shoulder for my head. She let me cry.... and cry..... and cry. I hope that you can feel some of the shoulders of those of us who read your post and the hugs that also come.
OHHH MY Magnoliarose, tears are coming down my face. What an inspiration your story is to many of us, including me. We all need to be on our pity pot some days, but you have the right to be on it every day with the burdens you have. I came from a very poor childhood, so I know what you are talking about, and I say to my DH time and time again, we have a burden to carry here, but at least we can afford it, because I know what it is like to have burdens and not be able to afford the things you might want let alone the things you need. Your time will come dear one, try and get away from this for a hour, a day or whatever and know that we are all here to hear you vent. You will be in my prayers.
Thank you Liz and JudithKB, I have been sitting here for twenty minutes just blankly staring at this screen. My heart is broken, really broken. Fearing that no one is out there tonight. I pray for all of you, and I am not usually a sad person, my husband has been watching me cry with no emotion what so ever. Its the emptiest I have ever felt this house be. I don't mind being poor, at least I have this computer. I could live this way, but its sense of there never will be anything after you lose all the meant everything to you .... your spouse. I would trade everything I have for him back. But I know that won't be. We make a little too much money to get any real kind of help. I have lupus,fibromyalgia and degenerative disc disease in my back and can't work. And I couldn't right now even if I had a miracle happen with my health, my hubby can't be left alone. Right now I guess I just need to cry this one out and I think theres going to be a river of tears here tonight.
Thank you all on this site, especially Joan. I don't think this night would have a good ending if I couldn't be here saying what I am. I am sooooo strong almost all the time. Just not tonight. My husband barely talks, shows no emotion, doesn't have any iniative to do anything for himself, and yet I still feel he is in there. I do all I can out of love and my compassionate heart. I have had to put on such a brave face and I have proudly walked into the public with my husband on my arm and faced the people looking at us when he wanders off and I have to go get him. I sit in waiting rooms with him and watch the people look at him because he just stares. You can see and feel how uncomfortable they are.
I want to be someones dear one again. I want him to ask me how I am. I want to wake up and realize this has all been a bad dream. Oh how I wish I could wake up. This I wouldn't wish on the worst criminal out there because this disease is cruel and vicious and I never met a demon yet I would wish this on.
Thank you again .... I think the keyboard is wet now.
With much love and the utmost of respect to each and everyone one of you here. Dianne
There used to be a song "Saturday Night's the lonliest night of the week." A long time ago. Pretty true though. I have no suggestions for any of us other than taking a shower, wrapping up in a nice bathrobe, pouring a glass of wine and reading a trashy book to make the time go fast. Blessings on all of us.
ah, yes, wine. I've got an Elizabeth Peters I'm halfway through so I'm going up to bed where our latest young cat is quarantined for another few weeks, and he can purr and I can read and sip.
(Chimi does not like new cat, whose name is Maxmillian. Max was featured on a local news story because shelters were full, and I bit. He was "intact" so now we have to wait six weeks for the testosterone to disappear before he and Chimi can stop growling at each other. They are both bluepoint applehead Siamese, but Chimi's a snowshoe.)
Dianne, we're probably all going to have nights like this as our LOs progress and most of us are going to be poor before it's over. We do understand your feelings and grieve with you. I hope things will be better in the morning with so many of our prayers going up for you.You describe so well the helplessness that all of us feel.
Dianne, I just wish I could reach through this computer and give you a hug...the hurt is so bad because the love is so strong. It wouldn't be so bad for anyone if they did not care. It is a huge thankless job we take on as care providers. There have been times that I have thought God did this to help me survive after he is gone, I know I grieve already for the DH I have been with for 41 years and he is not nearly as bad as most here. Please know that even though we are not physically present, we support you and understand what you are feeling. I know I have shed more tears in the last year than I have in a lifetime. Hang in there, tomorrow is another day, hopefully a better one.
((Dianne)), I am sorry you are hurting so badly. I am not sure if this will help you out or not, but I have been going through the Medicaid process for my husband. I have been disabled since 99, and we used all of our savings, plus cashed in life insurance policies and IRA's to cover my brain surgeries and medical costs. So I do have an idea about how you feel, all we have is SS now. I am 41 years old, never dreamed I would find myself here!
Due to Lynn’s Alzheimer’s he automatically qualifies for what in - New Hampshire they call “The ChoicesFor Independence Program” It is offered through Medicaid and is the reason I signed up for it. I am sure every state must have a similar program? I contacted our state health and human service office- Adult and elderly services, and they told me about it.
What this program does is take care of you the care giver, so you can better care for your LO. The whole Idea is to try to keep them home with you. Of course they want to help with this, as it costs a lot less money! A few things they offer, are in home nurses, respite care, adult day care services, things of that nature. Maybe this is something that could help you out? it’s a tough road, but together we may just make it. ~Nikki
Dear friends, I hope you don't mind if I join your discussion on this early morning when sleep eludes us....My sweet husband is in a nursing home and has been for five years, we have been married for 57 years and yet now I don't think he knows what the word marriage means. We are the only ones sometimes who have in ourselves the memory of our life together with our mates. I am in the process of putting together a DVD from a camcorder the story of our life, the husband as he was when well, and other memories for our children, grandchildren and greatchildren to have as a remembrance of us. Since my husband is now a stranger to the younger members of our family, I want them to know who their grandpa or greatgrandpa was and his accomplishments.
I know getting involved in a project doesn't take away the grieving but it does help you to focus on positive memories of your love. If you don't have access to a recorder, or camcorder then perhaps you can start a journal. Our mates have the right to be remem bered for themselves during their time on this earth and I can do that for my man. Perhaps concentrating on your memories of the lovely years will give you strength to live these years. I am sending you all my love and and hope that our heavenly Father will give you comfort and peace/
Now my 2 cents on cancer. I have lost too many loved ones to cancer to name here. Not all cancer has a cure. Each death was a slow torture. . My uncle had stomach and intestinal cancer, it took him 5 years to die. The last 3 years of that, he was in a hell I can’t begin to put into words. My dad visited him every single day, and was with him the last 16 days of his life. Never once leaving his room. Dad swore he would never let us watch him die, the way he suffered watching his brother die.
My dad fought colon cancer, and melanoma. But, when he was diagnosed with the same cancer that killed his brother…..my dad kept his word…..he took his life. This was in March, I am still in shock and feel I will never heal. . It is a certain hell to be losing my husband to Alzheimer’s, but…. Cancer has hurt me personally, far worse. Perhaps because I have lost more I love to it.
Even before my dad, I have often wondered which is worse? Oh I know, Alzheimer’s is worse on those who care and love someone with AD. You lose their heart and soul, long before death takes them. But, for the person afflicted… I wonder. My uncle knew for 5 years he was dying. Every single day, he was aware of it. That has to be far worse in that respect. IMHO I am grateful Lynn has no idea what is happening to him.
carewife, what a beautiful tribute to your husband! I have already made up albums for Lynn. At my dad's service, we made a video , it played during his whole service. It was so moving, I have a copy of it and it is among my greatest treasures. I have since been looking through old photo albums for photo I want to scan and upload, to make a video honoring Lynn's life. You are right, it is helping me bring back the better memories. Take care, and hope you can get some sleep! ~Nikki
Nikki, thanks for your comments about certain cancers maybe being worse than AD. I have also watched the slow horrible death of a relative dying of cancer. As bad as AD is, right now I think incurable cancer is worse. However, my DH is not that far along. I may change my mind when we reach the end stages.
I think that there are too many things that can affect the experience, to be able to say one is worse than another from the perspective of the caregiver. How close was the relationship, what symptoms developed and how bad did they get, how long did the misery last, how experienced was the caregiver in dealing with terminal illness at the time the LO died ... ?
Nursing my first husband while he died of incurable cancer -- there was never any hope for him -- was beyond words. If the AD experience with my second husband is any worse than that, I won't survive it. Literally. But that is me, and mine.
Dazed, sunshyne, I am sorry for you loss. Cancer is so brutal. I wholeheartedly agree that it is ones own personal pain that biases ones thinking in this respect. Losing Lynn inch by inch, day by day is indeed shattering my heart. I know this may sound odd, but as bad as Alzheimer’s is I am grateful Lynn has it, instead of incurable cancer. He doesn’t have to live with the knowledge of what is happening to him. In that respect, his memory loss is a blessing. Losing a loved one is never easy. Keeping you all in my thoughts~Nikki
In my opinion, I'm not sure that I think it isn't that dementia is easier or harder than cancer for the patient or the caregiver. I think that doctors and outsiders suggest that tests be taken and that surgery occur that they would never suggest for a terminal cancer patient. I think with dementia they don't think it through in the same way they would with a termina cancer patient.
Everyone understands that if cancer can't be corrected with surgery, that it might be terminal. People, in general, and even doctors, don't seem to recognize that dementia is also terminal.
I've written my memoirs and DH's for our kids. In January I plan on starting a DVD of our marriage. How am I going to boil down everything that has happened in the last 60 years to 75-90 minutes on a DVD? Hmmm. I think I'm going to have to think some more. It's going to be a big project, but one that will a lot of fun to do. I've had two people offer to help me with it. Both of them have done these before. I'm not proud! I'm going to take them up on their kind offers. :)
Carewife My daughter and I made a booklet about my Mom's life in picture and written word as dictated by her while she was alive. It is one of most cherished possessions. Both my daughters read exerpts from her bio at her funeral and we have the booklet on our computers and sent copies to friends and family who requested it. We have been working on one for my husband and myself from our Grandparents to present day. If anyone would be interested in viewing me Mom's e-mail me a lmohr@casinternet.net
I keep thinking I am not going to read these posts anymore, but I feel so connected to all of you it would be like throwing good friends in the trash. magnoliarose (what a beautiful name), carewife, all of you - this is such a hard journey and we are lucky to be able to connect through cyberspace. Just so you know - my DH did not die of AD. I hope to get the death certificate today or tomorrow and even if it says that is the cause of death I won't believe it. I am so thankful we didn't go through with that gallbladder surgery - it would have done nothing. As I look back to 7/9 at the Bozeman Urgent Care I can see the look on one of the nurse's face as she checked Hank's vital signs. When she noted his back was clammy I now know exactly what she was thinking, since too late I find that is one thing that happens in the up to three months prior to death. Also, the low BP. I so wish I had known then what I know now so perhaps I could have helped my DH accept the end was nearing for him. You probably won't have the same experience as I did with the sudden demise, though others have had spouses with heart attacks that were more or less instant. Whatever, as painful as it it, I think we are much better off if we cry along the way to release some of the dam of tears that will be there otherwise. Now that I don't have to care for Hank I can go to the Caregiver's cruise - funny, isn't it? I will get to meet some of you and that will be a special first trip on my own. Love to all of you...
I am so glad you are still posting Frand, I have gleaned significant information from your generous sharing of your husband's struggles. Imohr, I would like to see the e-mail address to view your mother's booklet you assembled. Nikki, thank you for your kind support for my project to honor my husband and as gifts for my family. Mawzy , I see you are engaged in a project also. Good for you. I am so honored to know you all through our forum. I am always amazed at the bravery you all exhibit in the midst of a very difficult life.