I'm new here. My husband was diagnosed with probable Alz. about a year ago. He is still really highly functioning although no longer able to drive. Memory really poor- asks the same questions over and over and is self-sufficient but needs cuing. I have been reading some of the posts and am feeling quite cold-hearted and inadequate. We went through about 6 months of bad behaviour getting progressively worse - rages, threats, suicide threats - ending with him being hospitalized for 3 weeks while they reset his medications. Thankfully it worked well and he's back to his old self but still with the poor memory. I had surgery 3 months ago and told a friend 'it would not be a bad thing if I died on the operating table". I don't think I'm suicidal or depressed, just realistic. My future looks so bleak! I'll spend the next many years caring for him and by then I'll be broke and old and possibly homeless. This is only going to get worse and worse and then he'll die. But in some ways I've already lost him. What is the point of dragging this out? I find myself hoping he'll have a heart attack and die quickly to spare both of us this long and drawn out nightmare.
Ring: First let me give you a big cyber "Hug". You have come to the right place and you are not alone...we all are here for you every single day. Nothing is too small or to large that someone on here hasn't experienced. We all probably had the same feelings of...life isn't worth living anymore? why me? how long can this go on? I wish they would just die and get it over with or just let me run away and hide. Believe it or not....the chances are things will get a little better in a few months. You are going through the stage that is just so totally off the charts from anything you have ever experiened or ever thought of experiencing...repeating, repeating, asking the same questions over and over and everyday it is something new and different and just a little bit worse.
In case you don't know, the * by a person's name, means their spouse has died. I can tell you from experience I felt just like you did and I thought I probably would be long gone before he ever was because I was getting so tired and didn't see any relief in sight. Well...one never knows what the future holds. Just about the time I thought I would cave or have to place my dh he took an extreme downhill turn and was gone within a month or less. The doctors and nurses all said he probably had at least a couple of years left. But, they were wrong. The point I am trying to make is that we don't know what the future holds so don't worry too much about the future right now. Just try to get some rest, take care of yourself and take one day at a time. And....come here and read or ask questions or just vent your feelings. We are here for you everyday and this is the best place to give you confidence and support..... Hugsssssss and more hugssssss.
I am so sorry you have had to join us. But there is no better place to be if you have a LO with AD. How old are you? I am 53 and DH is 61. Our journey started almost 3 years ago. And at first I was so overwhelmed too. It has gotten better for me. Some days are harder than others. (((Many hugs to you)))
Ring, JudithKB and blue know what they are talking about. I remember when it found out Kathryn had Alzheimer's I got a bool called the 36 hour day and read it cober to cover . When I finished I also remember thinking there is no way I can handle this, I can't do all that stuff. BUt I did and you know what I found out? It doesn't all happen on the first day. Once I realized that and then I was invited to this site by Joan and have gotten so much assistance here on how to handle things it became easier and before I knew it I was handling all that stuff. I won't say it has always been easy because it hasn't alway been. Somedays it was down right hard. But you will handle it and you will get though those down right hard days too. Just keep giving it your best and you will do fine.
I hope you saw my welcome to you in the "welcome new members" thread at the top of the page.
Whatever you are feeling, you are not alone. That was the main reason I started this website. I felt so alone in my thoughts and feelings. I needed to reach out to others who were in the same leaky boat as me. There is no doubt that this is a horrible journey, and it does get worse before it gets better, but everyone here has either been through what you are going through or will go through it. We can offer advice, support, information, education, and most of all, just the knowledge that you are not alone.
The good news is that there IS life after Alzheimer's Disease. I would not have thought so had it not been for our wonderful members who have stayed with us after their spouses' death and told us of their "reawakening". It comes after the shock, grieving, and adjustments, but it does come. Some have remarried; one widow/widower couple here married each other! Others are content with their new single life. Whatever is in store for us, I know, from those who have shared their stories with us, that we do have something to live for after our time as Alzheimer Spouse Caregivers is over.
Welcome to the family ring :) I dare say we have all wondered how we will survive, some days it seemed impossible. The earlier stages are just heart wrenching!! We are losing so much of our loved ones and adjusting to our new roles. Keep posting, you have found a place where people DO understand and will try to help you any way we can ((hugs))
I am 54 and wife is 61. Her Sx came on at 55 and was out of work by 57. It is all overwhelming in the begining but as others have said it doesnt come on all at once.
For what it is worth you should know that AD always operates at the maximinum level of stress for you. A new symptom appears and you struggle and cant take it any longer but as soon as you do finally get used to that behavior, it changes and something else develops. This seems to be unique to being an AD caregiver as compared to other diseases.
Scream? Sure, Cry? that is fine Feel totally overwhelmed and incapable? welcome to the club!
What ever you are experiencing guraranteed somebody else around here has experienced it too and can offer suggestions. If you have been reading the posts you also know that (except for religion and politics) nothing is off limits around here and believe me nobody will judge you on what you say. There are good people here and many have been saved (including me) through their support. Jim
JudithKB* thank you for your kind words. The star by your name shook me up a bit.....I go back and forth wishing him dead and heart-broken at the thought of losing him. I will pray for a better attitude for myself.
blue, I am 59. My husband is 62. The last 4 1/2 years have been a nightmare for both of us - cancer, heart trouble, surgeries and then the diagnosis for him a year ago. Part of the problem is that there has been no time between each challenge to recuperate. It's been like wave after wave of troubles. But when I was 50 things were still good (unlike you) so there's something good for me to hang on to. I think 60 is too young for him to have started this but of course it hits lots of people much earlier than that.
Thanks you all for your wonderful acceptance and kindness.
If it helps, I to wish for my DH to not suffer and go sooner rather than later. Then when reading about someone on here who has lost a LO. I think I am not really ready. But when faced with our future I can't help but think it is only natural to feel the way we do.
None of us are ever ready to lose our spouse. But, the state they are usually in when they do pass it is such a relief not to see them totally out of touch with reality and knowing they are in a better place also helps. But, the hurt in your heart can never be under estimated.
Ring my dh was 65 when he passed on 8/28/12 and was dx when he was 61, but I knew there was something wrong (very wrong) at least 2 years prior to that. However, during those years that were difficult there were a lot of good times too. We were able to travel some and enjoyed eating out.
Ring, you have said exactly what I'm feeling today. I just posted a comment on Joan's latest blog, then low & behold, here was your post! Sounds like we're in somewhat similar circumstances, not just with the AD, but with other things also. I too feel that I'm going to be so worn down, physically, emotionally & financially. I kind of want it to be over too, & then I feel guilty for thinking that. It's a whole new way of "living" (?) isn't it? Not like I ever thought it would be, but it is what it is. I have a deep faith, a good sense of humor (most of the time!) & sons to help with the decisions. I also journal, not religiously, but whenever I feel a need. It's good to get it all out. I guess we need to just keep putting one foot in front of the other, but it isn't easy.
Ring, I have certainly said the very same thing about my DH but agree with Mim that the best thing we can do for ourselves is to keep putting one foot in front of the other and hang onto that sense of humor. Take care of yourself and welcome to the group.
As the others have said welcome, you will find answers to many questions and a lot of support here. I was 50 when DH diagnosed he was 64, but he had it long before that I just did not understand what it was. One day at a time is all we have.
Welcome, Ring. I'm so sorry about your husband's diagnosis and the trouble it has brought to you and your family. I'm 56 and my husband is 57. He was diagnosed at 55 but like many, there were signs years before the DX. When this happened, it felt like a bomb had been dropped in our lives. For two years, I couldn't talk to anyone because I'd either try to hide my sadness and anger, triggering a crying panic attack, or just go straight to the crying. I couldn't imagine how I'd ever ever be able to handle everything. And worst of all, because so much of his daily happiness depends upon my mood, I had to do it all, AND be happy.
Impossible.
When there is nothing but despair, a giant hole of hopelessness, a pit of worry, it's hard to imagine how anything can make a difference. I'm glad you're here now. Because finding this site with all these wonderful people who have experienced or are experiencing almost exactly what I'm going through was my first step to finding a way to manage this unmanageable situation. A year into this and I felt pretty much like you. In fact, I said exactly what you said to someone "I'll spend the next many years caring for him and by then I'll be broke and old and possibly homeless." But I added, "but at least I'm not going to be fat!!" So I started dieting and exercising and have lost 53 pounds. It's something just for me in the midst of everything for him. Helps me remember that I have a right to a life, too, whatever the limitations might be.
WOW...good for your Bunny. You are so right, we have to find something we can do just for ourselves during this "caregiving" trip. Keep up the good work and don't bake too many cookies...hehehe.
Ring welcome, what you wrote could have been written by me. I am 59, dh is 60, have been "knowingly' been on this journey for two years but symptoms for at least 4 years before that. Sometimes I feel like it doesn't get easier but on the other hand I am not down on my knees every night sobbing into my pillow anymore. So I guess we adjust somewhat and mute the horror by keeping some activity to ourselves to enjoy or relax... Bunny so wonderful you have kept exercising! I can still leave dh for 40 mins. to go to gym and when I do my attitude is much better..I see my workout buddies and get my blood moving. Makes me stronger for all the bed-changing, lawn work and snowblowing. ;-( etc.etc.
Hi Ring, Welcome. I don't post on this site often but read off and on to get strength and coping ideas. It helps me to know that other people are going through this journey and managing to stay whole.
While some of my friends have/had parents, family members etc with AD, they have much older. It is alot different experience having a younger spouse who is demented. I feel that my family and friends cannot really understand what I am going through. My husband is 59 and I am 58. He has been dx'd since he was 50. He is now failing in terms of memory alot more and is needing more care. Since I am currently unemployed, I have more time on my hands and will probably be coming here more often for ideas and support.
Hi Ring -- like many others here, I don't post too often, but do check in daily for strength and support. There are so many of us, actually way too many of us, out there just trying to get through the frustration and sadness of this puzzling and anger producing disease. My DH is 62, I'm 61 and he was diagnosed two years ago, but certainly there were signs as far back as 5-7 years ago. I often feel overwhelmed and frightened by financial concerns, knowing that we've had to access our retirement funds 10 years too soon and we may run out of money before we hit 70. Trying to put on a happy face and be pleasant to DH as we have the same conversations word for word, day in and day out, has really sapped my strength. Just knowing there are so many here trying to do the same and finding some relief that I'm not totally crazy trying to cope really does help. Hang in there -- we're all in this together!
OK Bunny's Lamb - how in the world did you know I am overweight! lol Actually I am just recovered from surgery and have stopped doing the post-surgery exercises because I am too tired/busy/lazy/whatever. I have been telling myself how important it is to get back into it because it's part of taking care of myself and if I'm going to get through all this, it will be a good thing to do what I can to stay healthy physically and emotionally. You are an inspiration.
LOL Ring! Well, who wouldn't be in these circumstances?
It's hard enough taking care of every aspect of everything while taking care of hubby. All of which I pretty much resent and/or rebel against most days. But what I didn't know was that I would also have to step up and take care of ME, too. I guess I have never been a great self caretaker, so adding my own care to everything else just seems unfair! And the funny thing is, I resent the added burden of having to take care of myself most of all. Yet from everything I've learned, it's the most essential element to making the situation bearable. It's all very confusing. But it does help with all the heavy lifting :)
And Judith -- you are so right! Saturday is baking day ... eeek!
Ring, I think everyone who is pretty far along in this journey wishes for a speedy and relatively painless end for their spouses. I do...every day. We are end stage...hubby can't do anything for himself except walk and doesn't do that well all the time. Dr. Kevorkian, where are you? If I only had the kahonas to help him along, but no can do.
Ring, I can understand your feeling—I am dealing with the consequences of those feelings right now. My husband died last Saturday morning at home, very quietly and simply—just quite breathing. He was in the later stage six, needing help with everything, but I had planned on caring for him at home as long as possible (look at my shelves with a six month supply of incontinence products).
So many of you are the same age as my children. I just can’t imagine going through this at your age. My husband was 82, diagnosed 12 years ago. A person can’t help wondering if it wouldn’t be better for them as well as us if they had a heart attack or pneumonia and put quick end to it all. And now that it really happened, I wonder if I will feel guilty for having had those thoughts. So far I think I’m OK—but we’ll find out next week when reality starts setting in.
I received a wonderful gift the other day - an attitude adjustment.
I was at an Alzheimer day away Christmas party and I noticed a quite elderly couple - she had a walker and was moving slowly and was the caregiver. And this thought just popped into my head: "how lucky I am that this disease hit DH while I am still young enough to be in good health myself and sttrong enough to cope".
This thought came right out of the blue because I have spent the last year since his diagnosis feeling a little "cheated" that Alz. struck him so young and poor me, etc. (check out my first post).
While I know that my feelings can and do change day by day - and sometimes hour by hour, (and the blues will be back) I nevertheless was grateful for this gift of a new way of looking at a bad situation
Lori*, don't you dare feel guilty!!! You stayed the course - you and him - right up to the end. You should be proud. In sickness and in health, for better or worse, til death do us part - you lived it. I am proud for you!
Lori* You did nothing to be guilty about. It was not like he could of gotten better. You only have wished what so many others including myself wish. A peaceful end to a very tragic disease. May you find peace in your heart and my you be free of any guilt (((Hugs)))
ring, I to am kind of glad that we are younger. And having our 16 year old DD still at home is such a blessing. I feel sorry that she has to go through this. But she always reminds me that her dad has always been like this. She loves her dad very much and is very protective of him. I have days where I feel cheated, but really there is never a good time for a bad situation.
How can I be strong enough? That is a question I ask myself constantly since my DH dx of AD a few months ago.
I think that is why I was so terrified by his symptoms and used all my powers to deny or avoid this dx. Most days I am obsessed with this heavy weight on my shoulders that prevents me from making the most of this time. I am so relieved to have found this site but then I just focus on all the dreadful things to come. I can't seem to get past the feelings of disbelief and sinking feeling in my pit even as I awake each day. I pretend and "Act" like nothing's changed around my DH. And that takes all the strength I have. What is a source of strength for you my new friends? I am desperate for any suggestions.
My source of strength was knowing that I was going to be serving a noble cause for several years and I had to put my wishes and future plans on hold and devote all my attention to making this final journey for my spouse as comfortable as I could. Was this easy...NOOOOO. But, as the various stages came and went it became easier in many ways. And the closer it got towards the end it was relative easy and I felt such a relief for both of us. I can look back with few regrets. That doesn't mean I was always there with a smile, nor does it mean I never got angry, etc. We all are only human and the burden at times is just almost more then we can handle. The one thing I can say to you is denial is not the solution. It does not help either of you. Coming to this great place will help you more and more and you will begin to compare what others are facing which may very well be much worse then what you will face. Also, I would often say to my spouse, "At least you don't have any pain". You will do fine. We all will be here for you and support you in your decision and we give out lots of hugs. I am sending you many hugs tonight and you are going to gain more strength each day. Count on it.
Lorrie, I could not have said it better than Judith KB* just said it. I so wanted to answer you before but just was at a loss...
Personally, a couple of weeks ago, I thought I might not make it. What with a horrible flu and lung infection, no sleep for almost a week, Dado falling a peeing everywhere and constant chasing him, then...people calling me and yelling at me and oh it was just unbelievable.
I had to fall down on the floor and scream in grief, oh help me help me whoever is listening. Also coming on here and posting in the middle of the night.
So, my answer would be., find help, reach out, and reach IN to find your strength and know you HAVE TO DO IT. Joan started her new blog today on how to help caregivers, I myself may not have reached out enough. Lorrie, I too have had that horrible sinking feeling, for months on end. Do your best, and if you cannot take it , don't . Find help, do not let it kill you. I was watching a show on PBS on how spousal caregivers are the most suffering caregivers. Don't go there, just keep looking until you find help.
Lorrie, each of us finds our own strengths during this time. it seems a process and you will find as time moves forward you will adjust your strengths and weaknesses to overcome and survive as do each of us here. for me, knowing that my DH 's life now rests in my hands and how to make sure he gets the best of care and whatever times we have together to make memories. not all will be good memories, but none the less its times we spend and will remember. knowing that I must step up to the plate and take the reins as to his care and end of life decisions, making his time left the best for him possible, and like judithkb says, put my life on hold for now to see this thru with dignity and love. thre seems to be more support groups now as well and if you have one in your area get involved early on. any support is critical. at first when early diagnosis is received, we all feel the hopelessness, fear, and ask exactly your question, how will i gain enough wisdom and strength to see this thru? it comes thru perseverence, and as we tackle each day. rest assured this group here will also be a life support during these next years and you will gain much support and confidence reading and sharing experiences. best of luck. divvi
Divi Coco JudithKB Your words are the first I've heard this morning and I am so grateful for them. I will reread and ponder each thought. I am fortunate to have wonderful family and friends . But who really understands better than one on the same path. Finding all of you on this site is a real comfort. But, I also have been trying to find a spousal support group where I might meet someone face to face. Today, I am going to the main Alz Association in the city to a meeting for the first time. Wish me luck.
Lorrie....We would all like to know how old you and your spouse are. You will find all age groups here and some with younger children still in school. And, if you just found out your spouse has AD you probably will have several years of his illness with only minor problems that will affect your life style. After my husband was dx and he had just retired we took advantage of his ability to still do many things and we traveled extensively and it was only the last 6 months of his life that we had to stop doing most everything.
Like others have said get all the help and learn of about the various support that is available in your community. Please feel free to ask any and all questions you have regarding AD. There is a saying among us and that is: No two people with AD are alike......You maybe have read on here about the many spouses that are incontenent and you are saying to yourself...."I can not do that...that is my line in the sand when I will have to place my spouse in a home of some type"....well, I for one was very lucky and my spouse never became incontenent...so don't worry about things that haven't happened...because they may never happen to you. Hugs this morning.
that is so true Lorrie, your mate may not even get some of these really bad symptoms. My guy has baffled the doctors with his progression so rapid and intense, however, in the back of my mind, if this is going to kill him, do it quickly.
And Lorrie, as for incontinence etc. You know, that was not a big deal for me, just put them in the shower, scrub them up good, and then I would run coconut oil and good smelly things all over him, he loved it. Lucky I have not had to work lately so I had time for these things. It is SO REWARDING to care for another human being.
And so many have said here.,, to glean what you can, the good, while you can. I look back to the first year at the times I got so short with him, my denial let me think that maybe in some way he was putting it on. Now I know better.
And, though when I was deepest in the trench and could not see the way out, the light is coming on. I feel really good about myself and my decisions, and I KNOW, that I will make something better for someone ELSE when I get a chance. I have been talking with a couple of others in this small town about offering a free service, a few hours each week, for the shut in elderlies, like gardening or cleaning their homes. I KNOW, what it is like to be ignored and lonely, and something is calling me to this, not yet, but soon. Not for my glory, but for truly helping others.
God bless you Lorrie, and all of you. Keep coming here, and find a local group too. This is something I wish I would have done, and in fact, intend to go the the Alz. association in our town to find meetings.
Coco - your attitude is inspiring. I remember being so annoyed with DH and thinking how difficult he was being. But he kept it from me as long as he could and I've always felt bad that I let him go thru so much alone -- but, truly, I did not understand, so I have been easy on myself. But when the time came and I cared for him and finally understood, I did glean the good. It does balance you and you are more aware of what others go thru. Someone yet unknown will benefit from your hard won efforts. Blessings.
Judith and Coco Just got home from support group in city and turned to you. It was surreal to meet the first Alzheimer's spouses face to face. It was a place I never ever expected to go, but I felt welcome as I do here. JudithKb. I am 62 and DH is 65 and dx is already moderate stage atypical AD. So I feel like I don't know how much more "good time" we have left. I am thankful for feeling stronger tonight. One day at a time.
Just read your comment about feeling bad that your DH went through so much alone. I could have written that . I, too was impatient and I believe too scared to acknowledge his difficulties and pain. But, I hope I can forgive myself. I am trying to do everything I can now to ensure he has the best care. That is why I need to become strong!
Lorrie: None of us know how much time our spouses have left or even how long various stages will last. Every thing can change on a dime. If you haven't gone to the Fisher Foundation AD web page I personally think it is worth visiting and it the best in describing the various stages
Even the professionals, doctors and nurses from hospice said my spouse probably would last another year or two when they first started seeing him....but I told them they were wrong. I said he would be gone before the first of the year (2013)...this was in April 2012....he died in August 2012. Coco's spouse and Jim were running very close last year in the spring to being in the same stage....Her husband is still alive and mine is gone.
Also, I think alot depends if your spouse has other illnesses along with the AD. My husband had a heart condition and COPD. My husband died at 65 years old. Was your husband in the service? They can offer you alot of help that is free.
So glad your meeting went well for you. And, you will get stronger and you will learn to pick your fights so to speak. And, you will learn...there is little to no reasoning with them so just agree with what they say....they probably won't remember anything about it by the next day...and you will linger in sadness or just being upset.
Ring, I am here to tell you that I often wish Lloyd was gone and know that I will miss him terribly. I don't want him dead because of my part in it. I want him dead because this is no way for him to live. He has no quality of life, little to no cognition or comprehension. There are days he aggravates the hell out of me and I get short with him. He won't remember in 5 minutes. Most of the time, I just do what has to be done. I tell myself that at least I am teaching my grandchildren what real love is all about...all of them, from the 25-yr-old down to the 2-yr-old.
I haven't read the entire thread and I'm late to the party. But one thing hit me in the original post.
There is absolutely no reason to end up broke and homeless. But you have to be smart about the entire thing. There is Medicaid. You need to know how that works so when the time comes you go into it before you are totally broke. It is set up to allow the caregiving spouse, what they call the Community Spouse, a home to live in and enough money to be able to live there. My husband went into Medicaid 15 months before he died. I waited a month or two later than I should have because he was so sick I expected him to die much sooner than he did, but I did the paperwork early enough that I am living in my home, will be able to do so as long as I can live alone, and I'm doing OK for money.
It is cheaper for the government to do Medicaid at the right time than it would be if BOTH the spouses needed to be placed because all the money ran out.
Lorrie ... if you are lucky enough to get steered to a support group just for spouses that is as wonderful as the spouse support group I discovered at LIAF (the Alz Assn. didn't have a weekly group just for spouses on LI) then that alone will make a positive difference in your life. My support group, along with this site, made ALL the difference in the world to me. And alhtough I no longer attend that support group, I still meet once a week with some present and former support group members for lunch (while my wife is in a LIAF day care program nearby) and I look forward to that lunch each week more than words can express! When you are with others who 'get it' ... well, it just seems to make life a little bit easier.
I think it's really hard to be strong on an ongoing basis. Caring for a person with dementia really should be a shared situation, and yet it seems to always fall on one person, the spouse. And I feel it gets harder all the time. On one hand, I don't mind trying to orchestrate my DH's day and he is currently independent with his ADL's. But the lack of appreciation and emotional support on his part is very depressing for me. I read about other spouses receiving words of thanks from their AD spouses. That is not the case here. I've had to make some very tough financial decisions without his input for a long time and he still doesn't trust me. The hard part is knowing that I never gave him a reason to not trust me. It's very discouraging.
Strong? I don't think strong is the word for me, just going with it. I believe from past experience if we try to be stron all the time, we will only come tumbling down eventually. Inside I want to cry but outside I have to just keep going with flow as they say. When I first came here 4 or 5 years ago it had been a few months since diagnosis. I read and was here daily.
The last few months I have been away - not sure why. Part was because I needed a break, part was I think I wanted to believe we would just chug along slowly into progression, partly denial. We have a group on Facebook where we share more than just AD, where we have a different kind of interaction. Might be time to come back here more since his AD is notibly progressing now. Events the last week have awoken me to those facts.
My husband is 65, diagnosed at 59. His younger sister was 55 when diagnosed. We are living our dream of workamping: travel from park to park in our RV working in the parks. Only difference it is me living the dream cause he can't work.