I'm one of the new members and I decided to get this off my chest because no one else understands. My husband has been in a nursing facility now for about 6 months. He just turned 69. I'm younger than he is and I have so many mixed emotions. I can't stand what this disease is doing to US. I go to see him and I'm afraid that one time will be the last time he will know me. Then the other emotion I feel so alone and empty. I see my friends and family talking about their marriages and where they will be going for dinner and places they will see on vacation. I sit here alone. I only go to restaurants as one when I go with them. I just turned 60 and I've been told I look like I'm in my 40's. I use to feel that way also. Now I feel so empty and alone. I would like to get out of this house to feel better but I can't. Then the 3rd emotion is I feel guilty feeling this way, because my poor husband is going through so much more than my selfish feelings. In other words. I'M A MESS.
I think that many will be along to say that they know exactly how you feel, that they feel, or have felt the same way. For me, the feeling never went away. Much as I miss my husband, I don't miss the nightmare of living with this disease. If it helps, I want you to know that I think it is much harder on us than on them We suffer for both of us and have the responsibility and hard work on top of that to make it as easy on them as possible. Not many, other than on this site, are doing that for us. You're not a mess. You're in a mess, not of your doing. Negative feelings are normal. You'd have to be thick in the head not to feel all that you feel.
We can't change what has happened; but, the saddest thing and your husband would certainly agree, is if the disease that he got also destroys you.
Don't let that happen. I'm in the same boat. We have to come to an acceptance that truthfully everyone married must face. Which is that one of us will pass on first leaving the other still here.
Alzheimer's makes that experience so draining and painfully slow that it's going to take more than we've probably ever had to give before not to get sucked into it's vortex.
I am also 60 and I am also told I easily pass for 10 years younger. My wife is probably within the year of also going into a care facility.
We have to realize that while our spouses need us and benefit from our support - almost all of them would fight the devil if they could help us come out of this allright. The hardest thing is to accept that we must learn to let go before they are gone as husband or wife and take on the role of nurse and care giver hopefully as something intermediary to when it is real that we are without them.
I have come to understand that I have to accept that a new life is coming and in that new life we didn't ask for but have - we should try and be as happy as we can be a step at a time as we're ready. I may date again or remarry or not. I am allowed to love someone else when I'm ready and I'm allowed to laugh and to enjoy life again. I told my wife that never thinking it would be me. Go and live.
It's up to me to either cry that I've had so much to endure - or to take the pain and feelings and memories and get some sun on my face. I will have to push myself. I'll make it. That's because I believe what I told my wife when I thought I would die of lung cancer long before she passed. "Go out and live. I want you to be happy."
Many get caught in the guilty feelings. The truth is feeling guilty after what we've done is a certain sign of the damage the disease has done to us. We should be feeling like lions. After what we've fought. Unfortunately nobody's good at sacrificing for their own benefit as well even though everyone has learned to sacrifice for love.
It's Zurich for me. I'm hiring a hard working Philipino, will pay her well, and make sure she cooks authentic chinese food. Or I may get my body tatooed (yuk) and hang out on Fire Island in New York. I might join a nudist club and sign up for volleyball (nudist most popular sport), or I might just approach some shy, lovely thing and ask her if she wants to come home and meet my cats. I haven't decided so it's all rough draft. What I won't do is let the disease win. You gotta want it. And then you gotta do it. Just like everything else in life.
Paula, just a week ago I had a total meltdown..first was a call from one daughter who is in SA..heard all about how wonderful the weather is, the views from her flat, the job and her mates at work, the wineyard and wine tasting, the safaris etc..then shortly after that call a skype call about daughter no 2 who lives in Iceland, just having been in the US on the east coast for a festival, and another trip back for another festival in this month and a 3 week American visit again.. and another trip back in Oct...then daughter no 3 just got back from a wonderful week in Fla at the beach soaking up the sun..oh and going again with her sister for the festival...and that was more than my petty little mind and soul could stand...I sat down and wrote out" here is my wonderful news:" if I were to write about my fabulous past month of fun and excitement.. get up set out meds. stay and make sure meds are taken, make breakfast though DH doesn't want anything and "will get something later" which I know he won't and being on Insulin he has to eat, make bed, start laundry, get him out of jammies or into clean clothes, urge him to spruce up so he doesn't look like the Unibomber, try to clean the house a little, run to the drug store for his meds, head for the grocery store, get the car tune up appt, make his ENT appt, get him to the lab for lab tests, don't forget the dental appt, , got to pay bills, got to meet with the tax lady, figure out lunch, figure out dinner for someone who eats 2 bites, show him how to work the remote for the TV AGAIN, try to get him out for a walk, ...and so it goes...gee won't this make for an interesting Christmas newsletter NOT/S Sure we all feel empty and discouraged when we see others , like our neighbors who are in the 80s, taking those nice morning walks, or a group of gals out for a group hike, or the neighborhood ladies coffee group meeting and realizing no one asks you because no one wants to hear about something so drab as taking care of an Alz pt, realizing too how many friends just don't call anymore to even say hello because they don't want their happy little worlds dusted with our misery,or couples out to dinner having a real conversation and not having to answer the same question over and over and over in less than 10 minutes..sure we envy those who have a "normal" life while we feel like life is passing us by..we are full time unpaid cargivers now who have lost our partner in life to this disease and we suffer fools badly now and even find we somewhat resent those who will patronize us when they say they UNDERSTAND what we are going through when in fact have not the slightest clue. And that is what makes this place a saving grace..we can spit it all out without fear of being judged and we are among cyber friends who do get it and do know exactly how we feel, the fears we have and the constant sorrow we carry. You are not alone..you are among frinds..it is safe here.
The bigger task that we have, is to fight letting this damn disease take us along too and that is not an easy task. Sometimes some will even feel a little guilt at the slightest pipe dream of a life later..and yet we need to keep in mind that our LO would not want us to lead a morose life, they would want us to go on and live..I know my DH would. Right now I don't even know what I would want to do other than a little travel ( if the world will be safe for that then), get back to photography which means getting out and going places other than my back yard or taking pictures of my Tuxie cat( who likes to pose). Would I want to remarry? right now I would say no but that does not mean I would not like companionship to enjoy, maybe I'll redo the yard, or repaint the house who knows but we do need to find a way to day dream about what we might like to do after..life is to be lived, we just have to find what we love or loved doing and go for it again.
So many of us feel the same way. I hate the loss of freedom. I feel locked up in a cage many days, as I can't venture any farther than the bird feeder in the backyard, which is 10 feet away. And even that was tough, with 5 months of heavy snow and ice.
I am 56. Two years ago I would have said I lookd forty. Now I look like my 83 year old Mom with dementia.
Mary,Wolf and Mimi-You are very wise, and your posts pretty well sum up the reality.
Oh, my, all of you could be my children. In fact, I do have children your age. Wolf, you remind me so much of my son because he has the same weird sense of humor. And Mimi, if you will just think about it you are glad your children are happy and leading such interesting lives. As a mother our children's welfare always come first. Two of my children are having a lot of financial problems and I worry so much about them. Dog, my loss of freedom is probably the hardest thing I face. The day I married, 54 years ago at the age of 28, I was worrying about giving up my freedom and really thought about not showing up for the ceremony. My Dh and I always trusted and gave each other "me" time. I miss "me" time.
Bama, I don't begrudge the kids having things in their lives to enjoy. I do question all the activity without more time figured into seeing their dad...two of the 3 are in pretty good contact with him either by skype or phone but one is so far off the planet in her own world that we seldom hear from her and when we do it is like one long term vacation..if one has so much time to do the holiday fun things great but somewhere in there must be at least 15 minutes to sit down and write a real letter...
And when you get a morning full of all this happiness after a stressful week it is too much happiness overload kind of like someone being on land telling you how wonderful solid ground is when you are in quick sand sinking under the wt of it all.
WE all miss the "me" time..that was well put! How often have I said that too.."when do I get a turn at doing what I would like"
Just yesterday DH called his cardio and cancelled the protime appt so he could go out and be outside..then today he changed is mind, tried to get the appt back and no joy...so the one free day I had I don't now with plans to do something I need to get done without interruption is gone...shrug!
Mimi, I do understand. Some days I don't think I'm going to make it through this journey. I would love to see my daughters and the grandchildren I understand their situation and I know if they could be here they would. I talk to all three of my children often but it is not like having them home. (Hugs)
Bama, I'm a little too old to be one of your kids - a younger sister maybe!!!!!
Mimi, how often does your HB have to have his PT/INR (protime) taken? If it is frequent and long term, have you heard about the "CoaguChek XS System" from Roche Diagnostics (www.coaguchek.com)? It is a machine similar to the blood glucose meters. A friend's HB got one and told me about it. I took the info to Claude's cardiologist. He was all for it and wrote a script for it. In fact, the machine is very similar to the one he uses in his office. Medicare and/or BC/BS paid for it in full so we weren't out of pocket for any of it.
The company sent a rep to the house to show me how to use it. I did the test, called the readings to the company who called the cardio with the results. Within a few hours, the cardio called me with any changes that needed to be made.
It was a godsend for me as it was getting harder and harder to get him out of the house, into the car and out again etc. And particularly toward the end, he was in a wheelchair. As we owned the machine, when the end came, I donated it to our Hospice. They were delighted to get it as they had several patients who could benefit from it.
Paula, I think all of us feel the same way you do. When I look at others that are married and happy and sharing life together as a couple I feel very depressed. For me, the only things worse than being single and wishing you were married is being married and wishing you were married. I HATE IT!!!
My wife has been in an ALF since last June an its 70+ miles away ,I try to make the drive every tues an friday an the guilt at times overwhelms,not many days that I can make it both ways without a hankerchief nearby,but after nine months I finally took her black lab to visit at the urging of the aides an the director because they told me LO would stand by the windows an ask if anyone had seen her dog,when we walked in she never made a fuss,patted the dog a cpl times an then before I left she told me that the dog sleeps on her bed every night,that day as I drove home it became more clear to me that they really do live in another world,while the guilt will always be there I know that she's safe an like Wolf,life is for living,if we let it destroy us both then the disease wins,I'm not going to let that happen,I'm not quite ready to take up skydiving but I am going to have some "me" time
Being married and wishing you were married - that is profound, and exactly the way I was feeling tonight. I was missing the little things - conversation about the concert we had just attended; closeness - just married stuff, and I was feeling very down about being married, but not having my husband. I hate it too!
Paula, Your comment "the only thing worse than being single and wishing you were married is being married and wishing you were married" That sums it up better than anything I have read or heard.
It is so difficult to know "what will never be". Sometimes a good cry helps. I have five children, 3 sons live out of state, two girls here in Michigan. One of my sons is devastated he can't help me more but his life comes first as he was just transferred from Michigan to Kansas City. Nothing he can do for me but he is sorry and says so. I know the others feel I married Dad so it is my job. My dh isn't too bad, can still take care of himself but can't drive anymore and his memory loss is profound and has a difficult time expressing himself. He had a lot of friends he worked with but somehow they have disappeared. One e-mailed me yesterday saying, "when we get warmer weather, your husband's ATTITUDE will change." Can you believe that? They think it is an attitude problem. Just plain dense and these are all very well-educated people. My dh and I live in a world of our own. He does better with a quiet routine at home but I do manage to get him out with me to run errands. My "me" time consists of staying up until 1 AM reading or watching recorded tv programs. My dh delayed retirement until he was 74. AD entered the picture about 3 yrs. later so we did not have the "golden years" so many enjoy. Yes, I envy those who travel all over and live the good life. Not meant to be for us. Not realizing it, we are probably are meant for better things. Hang in there. We are here for you.
I also miss the conversation we had as a couple ……. you know, the spontaneous everyday things you talk about, like Joan said, “the concert you just saw.” In my case I have caught myself starting to tell him about something someone said at work & then I decide that he won’t have ANY idea what I am talking about so why even bother. When I come home from work (I work one day a week) He asks how work went & I always say fine, but I don’t go into detail because it would take more energy to explain things to him than I have, I guess what I am saying is that I miss just having normal conversations, I hate having to think about everything I tell him.
Shirley, Funny you should mention one attitude of the kids is " you married him so it is your job". One of mine actually did say that to me before we really knew what was wrong with dh. And like you his friends will come around once in a blue moon and almost feel relieved when they learn they can't go do this or that because of an appt.I hear it on the speaker phone with a very enthusiastic " well we'll give it a try another day!".... My time for myself is like you..up till midnight watching a tv show I usually fall asleep on or trying to catch up with the mail and bills or read something....travel?..he can't recall our 25th anniversary trip to the UK or our 2008 trip to Iceland with the kids...and just yesterday a nephew, whose mother has ALZ and is in a NH, sent a cheery postcard from Spain.." it is beautiful here..you should see it".......CLUELESS....
Conversation!!!!!!!!!!!!! Even though my DH was a quiet guy I could make comments about something we were watching or stories about the kids or grandkids. Now, like most of you, I have to weigh every word, and most times just decide it is not worth the explaining that will follow. He is forgetting who everyone is so that doesn't help when you have to try and explain who they are. My heart breaks for you younger spouses who never even got the chance to share some alone time with your spouses that meant anything. Fortunately for us as soon as DH retired we traveled all over the US and back and forth from PA to California to visit our son. Now he wants to travel to NY (have no idea why) and to Illinois (his family is there) but it is getting impossible. I pay a girl to come and stay with my DH 2 or 3 afternoons a week now so that I can go to PT or just go sit and read. Expensive but well worth it.
When we had teenagers and got together with friends and family, we naturally talked about the kids and how they behaved . My brother-in-law said it sounded like it was the same kids and they just travelled from one house to another. When I read all the postings, I am tempted to say the same thing. It is the one spouse who travels from one house to another. So many of us have no more adult type conversations, afraid of saying certain things in case it brings on an episode of paranoia. The mental connection with our spouses is gone. If we love the spouse and had their love through the years prior to AD, then it is all worth it. Remember the old song, "Love Makes the World Go 'Round"? It must be so difficult for the caregivers who had difficult marriages to go through this. I pray for all of us. We need it.
Phil4:13 (I love your name!) my DH too is forgetting people. Just yesterday our SIL who lives across the street was getting on his motorcycle & DH looked over & said, “Who is that?” It hit me hard cuz it was the first time he didn’t recognize him. I am from Wisconsin & every year we go to visit my relatives & our son who lives there now, but not this year. Staying somewhere besides our house is just too confusing for him & so much work for me. Shirley, you are right about watching what you say. Sometimes I can say the most generic thing & for some reason he takes it the wrong way. Sadly, it is getting more difficult to remember the wonderful, fun time we had years ago. I’ve read that some of the memories come back when the LO is gone. So sad.
Yesterday, I told DH about a great thing that happened. Recently, I had ruined a fairly new tire and had paid for a new one. Yesterday, I talk to the owner and he is going to give me $30 credit that I can use to get our truck serviced. I generally don't talk to DH about things that I know are gong to upset him. I was sure that this was a good topic of discussion. Well it wasn't. The replacement tire new would have been $110. They charged me $85, giving me a break. The dealer told me that they should have only charged me $55, half the cost of a new tire. What I paid ($85) minus what they should have charged ($55) equals $30. $30 will be the cost of the truck service. When I brought it up, I didn't go into this much detail. I only told him that they are going to give me more credit towards the tire that I bought and that it is enough to cover the cost of the truck service. He started questioning me about prices, costs, etc. and within about 3 minutes was in a rage. He had it in his head that they owed me $55 and could not understand. I tried to change the subject and he noticed what I was doing. I told him that the last thing I wanted to do was waste the rest of my lunch hour arguing. He got really quiet and then changed the subject himself.
This and other things like it make me feel real empty. This empty feeling for me is a feeling of hopelessness. Like a kick in the gut.
Don't take that personally. I wouldn't be able to even go that deeply to explain something to my dh. Their reasoning button is broken and they just process stuff cockeyed. I understand the feeling of hopelessness because we know things won't get better but just worse. I try to just take care of things on my own and explain the bare essentials.
Mary in M – Exactly! That is what I meant when I said that I miss relating everyday happenings. It’s so sad when they can’t relate to something that previously would have made them happy (like the honesty of the tire guy & then getting a break on the service on your truck). Things that you would have just spontaneously told him. Unfortunately now you realize that, like shirley said, his reasoning button is broken so most things just don’t process. It is a very empty feeling….. I hear ya sister! shirley - you said don't take it personally. Well it still is hard to do even after all this time!
Here's something a little different about friends and feeling empty.
I just finished dumping our closest friends which is two other couples we've known for 35 years.
They're great people but they were facing this tragedy happening to us the way a 5 year old faces cleaning up his room. Telling me I talk about this a lot when it was only twice (in detail) in an entire year, horribly offended that I made jokes about it (called her my space cadet), argued with me that everybody dies when I said she was going to die from this (we're EOAD), trying desperately to keep the couples weekends as normal looking as possible.
So while some of us miss our friends, some of us are busy getting rid of them. What a crazy life.
I ran out of patience and don't need the frustration. I'm very lucky to be rich in family support from both sides almost all of whom are too far away to help; but, all of whom call and then really talk because they actually love Dianne and me more than their fear of AD. There are also other close friends who have gotten over it and stay close. So I'm very, very lucky and I wish everybody had this because it means so much.
The real truth is that I feel sick to my stomach that I told them to stay away. We all really did care about each other when life was 'normal'. So if I sound glib about this that isn't true at all. Everybody loses with AD.
I don't think badly of them. This is tough stuff and about as serious as it gets. They just couldn't face it and I just couldn't go on with the pretense there was nothing to face.
I have only two priorities in my life and anything in my way will get nuked.
The first is that I am keeping her safe here as long as I can and then I am watching that she is safe when she is in a home. I don't do more than help her through this and nothing but death will stop me from doing that. Not because I have to. Because that's what I decided.
The second is changing how I see life so that I am evolving single life thinking before it lands on me. I long ago realized my life is going to be quite different and that that will evolve as Dianne deteriorates and then when she's no longer with me in our home.
I've thought long and hard about that and even though I don't want it, I've got it, and that I want a life. I bore quickly with the superficial. This new life has to be real or it's garbage. That takes real effort.
I just dumped a part of my old life I loved because it doesn't fit in my future, it wasn't real anymore, and I don't have the cycles or inclination to keep trying. That hurts deeply.
But a new life isn't that different from a new job in a new city. At first you have no idea what you're doing or what's going on. If you want it though you keep at it and one day you look up and realize - you're over here now. Have to want it though and have to work at it.
In my mind that's the difference between walking and talking. Every caregiver faces this and getting on with it once we've decided to continue is the only sensible course.
Wolf, that was the best summation of our lives that I have heard. We all change friends as our lives evolve. When we were teens we had friends we thought would be lifelong and now have nothing in common. WHen we were young parents we made friends because we had a common bond with other parents and on and on. Now we have to make friends who are compassionate and committed to a different type of friendship. Most of the friends we have made int he last few years are there for us but there are a few that I don't want to be around because "they just don't get it". I am fortunate also to have family who are supportive. My heart aches for those of you who are without a loving family or friends. How lonely it must be.
When it comes to your friends understanding what the problem is, I think that age has a lot to do with it. At my age, my husband and I are both 81, it seems that one person in each couple we know has a problem of some sort and needs caregiving. The problems are diverse, but caregiving is caregiving whether it’s for AD, Parkinson’s or, you name it. You just need to be thankful when one person in the couple is mobile and can remember.
As for the children being aware and helpful, that also may be a bit age-dependent. I was 40 with teenage kids when my MIL went into the later stages of AD. I was just as clueless as many of you say your children are. And I certainly can’t remember being very helpful. On the other hand, our children, now in their fifties, are very helpful and sometimes seem to understand better than I do. They also have the memory of their grandmother and so have some idea of what to expect. Several years ago, it was my kids who insisted that their Dad no longer drive. They saw things that I didn’t see (or chose to ignore).