I don't really get it but now my husband is in care and he is like relating to a 1 year old, and I see the reality of it clearly now, and I have some freedom.....I am so conflicted. He has been in care for almost 6 months and only now, I feel the most emotional. I see him and don't know how to relate. When he was home, I was so busy doing things to keep him comfortable and cared for, that I didn't notice how bad the decline was. I am 63 and now I have gone out with friends a few times, see how much of life I was missing all the years I devoted to his care. Now I have alternating times of hating my visits with him and total emotional breakdowns when he gives me a loving look. I want to move on....I really do and I am stuck in the disease. I have never had a hard time before and all my relations thought I had the hard times before....but not true. I don't know how to move on to the life I wanted with him, but now may be there without him if I chose that and leave him behind. I do not want to sit in my home and pine for the life I want. I only have one life. How do I forgive myself for leaving him to live my life. I know I will always be there for him. I am so sad.
Your post really resonates with me. Following care at home my husband was only in placement for a short time before his death. During that time I was too busy for contemplation. Anxiety, yes; fear and dread- certainly.
So, it is now that I am stuck. I was reading the topic Joan introduced today and my thought was that no one wants to hear from me. I think of marilyninMD*, emily*, Bama*, Vickie* and elizabeth* and others who have moved on. It is their path that posters want to read about.
Moving on takes energy and initiative. I have neither.
I am sorry this is such a time of sadness for you. How could it be otherwise? I don't think there is anything to forgive yourself for...you have been there and you are there for your husband. You are in the middle of a devastating trauma! I think it is healthy for you to search and seek joy and comfort for yourself.
I have felt everything you wrote about, and have written blogs on all of it - the emotional roller coaster of wanting to move on, but being pulled back when sparks of the old Sid return; the desperation to let go of the life I wanted with him and to accept the life I have now; the inability to relate to the confused, lost child he is. What I have to emphasize to you is that it all takes TIME. It takes some of us more time than others. We have to give ourselves the time to sort it all out in our own way. Today's blog, to which abby* refers, about me trying to move on, is not something that came about quickly or lightly. When I first placed Sid, I barely got out of bed for 7 months, except to visit him and grocery shop. It has now been almost a year since I decided that I wanted to make new friends and find activities. As I said in the blog - often it is two steps forward and three back. This is not an easy road, and we cannot rush ourselves. I have listed below some blogs to which I think you can relate and may be of some help to you.
To abby* - Please note the last blog on the list. It has only been since I received the appropriate professional help from a grief counselor who truly "got it", have I been able to take some steps forward. Also, your lack of energy and initiative could very well be depression. It may help to see a doctor for some medication. If I was not on an anti-depressant, I would probably never get out of bed.
Thank you Joan, I read your blog and totally relate. I think we are the same age too. I want to find something for me again but am lost in a world I don't relate to anymore. I found myself in a situation where I got male attention and someone wanting to date me. It was exhilarating and then such a downer as I realized I couldn't, shouldn't, wasn't ready and then thought 'when am I going to be ready"? I want and I don't want.....I am a mess. It was better when there were no choices. Now I have them, I don't know what to do with the choices.
I am your age (64) and am very much against moving on. So I'm sitting in my room for the start of the fourth year after my wife was placed. The reason I say this is because even I have known and said all along that if I found out I needed to, I would find another woman to be with.
Some of us cannot be, should not be, or very much do not want to be alone. When that feeling is intense and repetitively comes back under these circumstances then I believe we should see them as valid and strong needs within us.
Either course you take will have strong reprecussions. My wife does not know I sit here. I do it because I choose it and there is nothing more to that. Duty, love or not if I really didn't want to live alone I wouldn't. Or if I really did meet someone I felt strong feelings for I also would move forward. I am not being punished. I have the right to be me.
The first thing you need to do is understand you are under stress. We all are. Your posts are clearly stress laden.
Understand your husband's sickness does not invalidate your right to be a person. Take some calm and time to find the truth you choose and can live with. All the choices have negatives. Which one is you?
"I want to move on....I really do and I am stuck in the disease." That's something you said in the first post. That could be a reaction to the horrible period we go through where we have no choices as you say and come to realize we do have choices except they're all bad. Or it could be that these six months have been enough to bring a deep need out which may be to not be alone, or to be with a partner.
Understand Abauche that you do not actually need to explain to anyone else. You need to find the truth inside you that you can live with.
I have sat here for over three years now with our EOAD while she is in a nursing home unaware of the world outside. That could be you. Think about that. I was 61 when she went in and I turn 65 this year. Those are precious years.
They're mine Abauche. I do as I please. That sounds better when I say I follow my heart and do my duty but it's my choice and nothing whatsover more.
You can talk these things out here because you are among friends. In real life I would advise you to shut up about moving forward and go and accidentally meet someone you click with. Then you can tell people that happened. Trust me on that.
....
I wanted to wish for a bike but I knew it didn't work that way so I stole one and prayed for foregivness.
abauche, I am rapidly approaching the fourth year since placement and I am still sitting here. I am 67 and time is marching on. Like Wolf, it is my choice. I hope I will someday decide to choose something different. If I do not there will only be me to blame. Everyone deals with this hellish stress differently and whatever you choose will be okay. The first year was the most difficult for me when I visited every day. No need to forgive yourself as you are doing nothing wrong and you have earned every shred of happiness you can find. Time will lessen your stress and I hope you can attain peace in knowing that you have done your best.
It is coming up to 3 years since my husband went into a facility and like you, feel like I am stuck in the disease.
It is like advocating for my husband and all the struggles I have when visiting or not has become my whole life. No energy left for anything else.
Thanks for sharing your experiences as it allows me to know I am not alone in significant struggles.
Thank you others as well for your feedback in this thread. I have been seeing a psychologist for years trying to cope too. And taking lots of supplements from the naturopath.
Abauche - it took me a year and hubby no longer recognizing me anymore before I could move on. Life does go on and what it looks like is for you to decide. I have had the good fortune to now be involved with a wonder man. I got a second chance for happiness and I plan it live what is left of my life to the fullest now that I've live one where the rug was pulled out from under me.
So give yourself the time you need to heal and do NOT feel guilty if you decide to move on to a new relationship. You gave him good care and will not be cheating on him. They are fading away from us and will never be coming back.
Hi aubauche, I just noticed your reply to Joan and wanted to add my voice to those who say that when and if you feel it's time, you should try for a new life. If that life involves a new relationship, so be it. It goes without saying that no one on this site is going to abandon their spouse even if they become interested in someone else. It sounds like you were caught by surprise by a man's being interested in dating you, so it's no wonder you experienced a roller coaster of emotions. Maybe you are not ready for that yet but if at some point you are, please try to give yourself the same understanding and kindness that you would give to another person in your situation. We are all just trying to live, which as it turns out, is a lot harder than many of us expected it would be.
I just wanted to say that as I was looking through some of the threads that this one really fits me right now. I think that what Joan said about having to let go of the life we wanted and face the reality of what we really have struck home with me. My DH has been in the NH for 6 months now and I barely have enough energy to get out of the bed and go see him. I have tried many different schedules trying to find what would work for me. Sadness and deep grief just seem to live inside my soul. I took care of him for a long time and was so very busy doing that that in the process I forgot about me. Now I look in the mirror and wonder who is there. I don't recognize myself. It is amazing to me that so many of us suffer so much and there is little relief for us. I went on a short trip to Santa Fe with one of my friends (she absolutely insisted) and for the first time in about 10 years I actually felt happy for a short while. That makes me think that it is possible for me to some day find out who I am now and perhaps experience that emotion again.
dellmc53--yes it is possible to survive this because I did it. For me placing my husband was almost more difficult than keeping him home so I know what you are experiencing. I dreaded the phone calls when he would fall or something. I would absolutely sob after hanging up,the phone. Are you talking with anyone? That does help and yes getting away helps altho I could not give myself permission to go too,often although I did visit a friend on several weekends. Trust me it will end and you will survive. We are here for you.
Thank you CO2. Placing him has been the hardest thing I have ever done. I went to see him today and he was having a good day. He was lucid and asked me to get the car, that he was ready to go home with me. It literally breaks my heart. He does not seem to realize that he can no longer walk. In fact he doesn't seem to have any body connection at all. He has a cell phone and the nurses will punch in my number for him. He will call and say that he is in the hospital and I need to come get him immediately. He has always been my rock and I too dread the phone calls because he has fallen again. It just seems too much to bear. When I walk out of the room and he raises his hand to wave goodbye I literally fall apart and sob all the way home. This is like a living death with no end in sight. I know by reading so many posts here that it will eventually end and that brings a whole new set of problems and depression. I just can't think of words bad enough to describe this plague of ALZ. It is an ongoing, never stopping avalanche of emotions and I feel as if I am on the wave of them all. I am talking to a therapist and it helps somewhat. I am planning to try to get away for a weekend every month but even that doesn't relieve very much. It seems to me like we all have continual grief and life goes on for everybody but us. I am so down after being with him today because it was a good day. I don't know if that even makes any sense. I think it gives me a false hope because I know that next time he may not even open his eyes.
One day at a time dellmc53, just take it one day at a time. Try to say that "just for today" you will eat something nourishing and enjoyable, get some rest, do one or two things that are just for you and that you really enjoy, find beauty and a little peace in a flower or a sunset or a butterfly…and you can take care of your husband just one day at a time…that is not as hard as thinking about doing it for a real long time.
I'm thinking it may not be a good idea for the nurses to be helping him call you. He doesn't really have the awareness, and it makes it very hard on you to listen to him asking to go home and so forth. Others may have some input about this.
I think we all can relate to that feeling that"life goes on for everybody but us." We are stuck in Alzheimersland with our spouses, on the outside and looking in at all those normal couples doing fun normal things….while we are miserable...but everybody here will help support you…throw you the rope so you can tie that knot on the end and hold on. (((Hugs))) You are one strong lady, and there are many people out there, I'm sure, who could never handle all that you have to cope with.
Thank you elizabeth. I fought the good fight, have gone through the "we can face anything together", "we will make it", depression, now what? and this last part which is I have to accept the fact that our marriage as I knew it is over. Thank you for throwing me the rope and believe me I am holding on for dear life. It has been such a very long time since there was anything I would classify as "normal". I just know that survival instincts are going to have to kick in. I continue to come to this website because I can truly vent my feelings and know that there are people that really understand.
Dellmac53, you can do,this and Elizabeth is exactly right when she says take it one day at a time and do,not look any further than that. When I would project into the future as to how long this may take it would depress me to,the point that I could not function. Yes your marriage is over or at least your idea of marriage and that is okay. The question you can ask yourself each time you go is is he declining? Can you see measurable decline? Like weight loss or inability to feed himself or dress himself. How is his ambulation? You can also ask the staff for their input. If the answer is yes then get on the phone and call hospice. They will come and evaluate him. A person does not need to,be on their death bed to qualify. They have to have measurable decline and they are reassessed every 3 months to see if they meet the criteria. We already know he has a terminal illness. My husband qualified in March because he lost like 6 pounds in a month and within a 2 week period could no longer feed himself. Honestly when he qualified it was like 800 pounds were lifted off of me and his care got a whole lot better. Your husband will get an aid 2 x a week plus a nurse visit weekly plus a social worker. In short you will have a lot more support. I felt exactly like you that it would go On and on because he was still walking and talking but when the end came it came very quickly. Also if you get him evaluated by one hospice and they say no call another. There is more than one hospice company. Some are easier to deal with than others. We are here for you.
Thank you CO2. I am truly trying to just take one day at a time. I have never known such paralyzing depression as this ongoing battle with ALZ. The NH tries very hard and I know that they are doing the best that they can. I had a meltdown though. Yesterday one of the nurses aides was talking ugly to my husband. she didn't realize I was right outside the door. I reported her immediately and she was put on probation right there on the spot. My husband was very agitated after she left the room and he said she had "thumped him around". Needless to say she will not be going near my husband ever again. He has lost quite a bit of weight and refuses to eat much of anything these days. He told me at one time they were trying to poison him. It is all so unpredictable and upsetting. They told me at the NH that the doctor would decide when my DH needs to go on hospice. I am not sure how hospice works at the NH. I looked in the mirror this morning and saw a very tired, sad, and stressed out person. Is it wrong to just wish it would all end?
No it is not wrong. My hb is no where near in the disease as yours but I am tired of this and also wish it would all end. Every time someone looses a spouse I envy then wishing it were mine.
Dellmc, Most of us have had those feelings. We spend our lives and our savings getting our spouses the best care possible, which causes them to live longer, but at the same time, we hope that it will all end soon. Then when our spouses die, we are crushed by grief. It's a wonder we are all not stark raving mad from living with these contradictions.
delmc53, No it is not wrong to wish it would all end. I wished that it would end for months. My husband was at home at the end, but at first I only felt relief both mentally and physically. It was a few days later that it really hit me. I just keep busy planning where I will be off to next.
Yes, it's a weird feeling. As much as I was tired, stressed, lonely, etc., etc., etc....and wanted that to end, of course...I knew that that would only happen when Larry died. And of course I didn't want that...but realized it was inevitable...but then there was the stress of not knowing how soon it would happen...it's like being in a prison of misery for the caregiver...but inmates in jail know when they will get out. We Alzheimers caregivers have no set end date...which adds to the stress and makes it difficult to plan for the future...and difficult to enjoy things, even if you want to...because you are tired, lonely, and worried all the time. Then of course you get the guilt because you wish they would just come on and die...oh wait...no you don't. Contradictory, crazy feelings. And perfectly normal, I think.
Elizabeth, Your comments resonate with exactly the feelings that I had right before he passed. The fact that you never know when it will end definitely adds to the stress of the whole caretaking thing. And you are absolutely right, it was very difficult to enjoy anything because of the constant worry whether the NH would call or what was going on with him. It was definitely a prison of misery. The crazy up and down feelings are a factor with dementia that I doubt other caregivers have with loved ones with a physical illness such as cancer. Usually with cancer, the doctor can give a pretty good estimate as to how long they have. With dementia that is impossible.
I can only agree that these feelings are normal, living with this disease that blew our lives up. The analogy of a prison sentence without end is quite fitting.
I just got back from the NH and today my DH had no words. He has always been able to say a few things to me, but today all he wanted to do was sleep. I woke him up and asked them to put him in his wheelchair so perhaps I could at least hug him and hold his hand. He would not eat anything and has lost some more weight. I sat there at the table with him and tried to get him to take a bite or two. When I got ready to push him out of the activity room he said I don't want.....and held on to the table leg. I thought I was never going to get him to let go. I don't know if I scared him by moving him or what. I looked at him and my heart just breaks. He is so frail and so sick. I, once again, cried most of the way home. The suffering that just goes on and on for years is just unimaginable to most people. I am trying my best to do things that bring me a little bit of joy every day, like walking my dog and gardening, but it is so HARD. We are NOT living a normal expected life. I often feel that ALZ is taking me down too. I know that after something goes on for such a long time people get weary hearing about it. I don't think it is because they are not compassionate; they are just getting on with their lives. We are stuck in a time warp and as long as my spouse is in the NH and I am supervising his care, I cannot do anything better than what I am doing and that is the BEST that I can do.
Dellmc53, I can so relate to what you are sharing and I just want to give you a huge hug and pat on the back because from what you are saying you are doing the best you can under a horrific situation and that is all we can do. I remember when my husband was moved from ALF to LTC within a 2 week period he could no longer feed himself and had to wear a bib and be fed like a baby. I remember walking in for the first time and seeing this. I was absolutely horrified, shocked. In fact I cannot find the words to,describe how I felt. The fact that you are still able to do,even a few things that you enjoy is what will help you survive because by doing that you are taking care of yourself. There were days I did not think I could go on for,one more day. In the end he went very quickly. You will get through this because I did and so have many others. If you feel he has declined since you last saw him, you may want to contact hospice or check with your doctor to see if he would approve a hospice evaluation. It certainly cannot help and it will improve his care and you will have more support. God bless.
dellmc53 When my DH was at this stage (He was still home and on hospice) I let him set the pace. If he wanted to sleep, I let him sleep, and would offer food when awake but did not force the food. Can you feed him in his room, in his bed? Sending (((Hugs))) I know this is hard.
CO2..........I would like to give you a little hint that Wolf gave me a long time ago.
You can edit your blog if you desire to change something or add something. It's really handy. I do it all the time.
Just sign in and go to your blog and you will notice a tiny "edit" at the top right corner of your blog. Just click it and you can change anything you like. Don't forget to click "Save Changes".