That is where I am tonight. After all the caregiver stuff I've been given and told over and over how I need to get away it just hit me that there is no "getting away". I'm in a hopeless situation as is every spouse on this message board. I don't want away I want him back and my life back. I was a very lonesome teenager and only found any happiness when I became his wife and I was never alone again. Now here I am back alone in my old age. All the well meaning folks who want to help can't help there is no help he is dying and I'm watching my life go away with him and there is nothing anyone can do. I went to bed and thought as tired as I am I would surely sleep but after a couple of hours I knew that only another pill would do it. What kind of life do I have when I can't even just go to sleep without help. I am so worn out with this charade I play all day trying to understand what he is talking about and him asking where E. is and I'm E. I tell him and he says no the other E. Is he looking for me before I grew old? I don't know how to play this game. He gets upset and angry when E. doesn't come back. He goes looking in the garage and out the door. I can't stand seeing this bright, intelligent man doing this. He sits and drools, how humiliating for him if he only knew. There is no answer to any of this I know. I'm not sure I want that rope to hang on to any longer. Only my friends here will understand my depth of despair tonight. I have an out patient surgery next week - nothing serious - but I won't be able to do all my regular things around the house for a few weeks and I don't know how I'll manage to care for everything. I'll have some help the day of surgery but no one 24 hours a day and I dread trying to get by and dh won't understand how to help. He doesn't understand much these days. Maybe now I can go to sleep - the pill will kick in before long now. All this rambling kept going over in my head and after crying now for about an hour and writing this down maybe I will sleep. Another day will be here shortly and it begins all over again.
Oh,flo. I hear your despair and sometimes I feel the same way,It is no way to live,but it is what was dealt us and I think someone will show us the way, surprisingly,last winter when I ahd several surgerie, DH seemed to improve enough to help out,I think Joan's DH surprised her and helped when she needed him,It is so hard to see someone who has been so vibrant and intelligent losing all their abilities.My heart aches for you.
So sorry Flo. I fully understand how you feel. I have so many people ask me if I am happy about quitting work. And in my head I think, no I am going home to watch my husband die. Our life is one of sadness. I know the lack of sleep, the last week I have been unable to sleep more than 3 or 4 hours a night. And think how much longer can I go on. But I know I am not alone. We all have the same thoughts and fears.
All I can do Flo is send you hugs. I wish you well with your surgery. And please don't over due. Will keep you in my prayers.
So very sorry, Flo. I don't know how I would manage this if I couldn't sleep. Fortunately, DH does sleep well most of the time. Please take care of yourself and I do hope your surgery goes well and some help will arrive - even if it's just that your DH instinctively knows you need some help.
(((Flo))) yes we understand how you are feeling. its a long lonely road caring for and watching our dear spouses dwindle away before us. flo if it gets too much for you please check with your dr and ask for something to help you cope friend. it can be just temporary to help you get thru the worse times. we have alot to be depressed over but we must try to see the light as well to keep ourselves healthy enough to see this thru. divvi
Flo, my heart goes out to you and to all of you. When I hear all the things you are going through and when I talk to my counsellor, I wonder how all of us do it and did it. I think when you are at arm's length from the disease you realize far more how difficult it is than when you were in the trenches.
Flo, know that there are arms around you and thoughts and prayers to help you on your path. I know that is not the same as actual physical help which would be so wonderful for you.
Jang* you wrote my words. I think a lot of us in the "after" wonder how we survived. Watching your loved one disappear in front of your eyes along will all your hopes is too much hurt. flo39-we can't change anything for you-but at least know that we care and understand.
Flo, I also feel your pain. Take divvi's advice and see your doctor for something to help you through this. There are many antidepressants out there now and you may have to try more than one. You can take on a temporary basis as long as you need it. Your Doctor is now one of your best friends.
During a extremely stressful time for me - I went to my Doctor and told him he had to help me. I couldn't sleep and was about to the end of my rope. He told me to take Ambian for 5 nights and off 2. Also prescribed a low dosage anti=depressant. Amazing how much this helped. I took the ambian for about a month and then just occasionally. You will survive this battle. Hang in there.
Flo: Do you have help in the home? I can't tell you how much having help with my dh has made my life easier. Yes, the heart ache and hurt is still here, but I seem to have more strength to deal with this on a daily basis.
Have you thought of calling Hospice and asking for an evaluation. Just having the people they send that do their evaulation helped and now that they have approved my dh for continuation I feel I can do this and I am not alone. The social worker is super and she knows all the ins and outs of what is available to make my life a little easier. I can pour my heart out to them and they understand and they try and usually succeed in getting the equipment and everything I need to feel that I have what is necessary to care for my dh. Your doctor can request their service for you.
oh dear flo. I wish I could wrap my arms around you and make you a cup of tea. We have all been or will be there also. As someone else said, the spring comes after the winter and the dawn comes after the midnight darkness. Take care of yourself and await the dawn.
I have to check out that darn ol moon! Flo I feel the same way these days mixed with straight out anger at our kids who are so full of great adventures and eager to tell of their exploits, as if I really want to hear it all right now. But no one volunteers to stay with dad so I could get away. I have gone off Skype and don't post to them on FB either.
It is so hard and sad seeing all you describe. It mis humiliating to see them decline but they dont know it for the most part. Bad as this disease is, there are some protective barriers for the patient. Not for us.
I don't sleep well now either. Up at 3:30 most days now after 4 hours sleep...maybe another hour later. Head just buzzes with all of this.
Oh flo, we all know how you feel in some way or the other. I'm sure a lot of us were nodding our heads in recognition of how we also feel. I have been crying off & on for the past few days. I look at DH & see that blank look on his face & I cry. Then I feel bad because I'm selfishly crying for me, when I should be crying for him, so I cry again. I am so lonely at times so I cry about that. Rock bottom? Make room for me because I go there often. Like others said, I wish I could be there to give you a hug of understanding, but I guess these words will have to do. ((HUGS)) to you flo.
Mimi...have you contacted your VA social worker and maybe you can get the kind of help I am getting and it does help so much. The VA is providing 24 hours per week of home care. At least it allows me 3 mornings a week to get out of the house and do the things I want to do. Also, they change his bed, wash his clothes fix him breakfast and lunch. My dh seems to really like the gal and I am sure he is tired of just looking at me and she is so great with him. We also have hospice and they are coming and going most every day. Of course he doesn't seem to know what is going on but it does allow for some kind of interaction with the outside world since he basically is house bound now as well as some activity in the house.
For me...when you know others are concerned and you are not alone in the responsiblity of total care it does help take some of the burden off your shoulders...at least it has...for me.
And, I certainly know where you are coming from with the kids. His sons will not hear from me until the end...I can't be concerned about those two grown boys right now.
I am in the same state as you. What can I do? If your surgery is next Monday or Tuesday I can get away to help in whatever you need. I just have to be back by Tues night. Please let me know. You don't have to be alone!
I can't begin to tell you how much I appreciate everyone who took the time to read and answer. I have very little computer time. I usually wait until dh is in bed for the night so I don't have to go see what he is doing or mostly he is sitting behind me reading what is on the computer. Every suggestion has gone through my head today. I should go see my pcp and ask about something that might perk my spirits a bit. I'm very hesitant to take anything but if it helps me get through each day I will ask what he thinks. He's been our pcp for 30 years- when he first began practice I worked part time for him so he knows us well. I am fortunate to have friends who have stayed with dh so I can go to my water exercise. Also my sons will come stay when they can. One son told me I didn't have to wait for the VA to send someone for 6 hours that he will come on his day off so I can get out of the house. When dh was first dx this son bought books on az and continues to try to learn about it. He is my sounding board so I am blessed by that. My DIL is a gift in that she helps with my sister in ALF. So I feel like a big cry baby when I read that others don't have the help I do. But everyone here knows what a very personal lose having a spouse with az is and nothing changes that. I'm going to try to just do one day at a time as far as I can manage that. Thanks again. Aunt B where do you live? I'm in Coffee County - is that close by you? The surgery is Wed.
Love from Hawaii Island to you too flo39. It does not matter what kind of support you have, you still have to watch the man you love lose it all. I think even if I had more loving help, I would still ache just as bad, for our love that is not the same anymore. It is not just about being overworked, under helped, angry at others...(like I am ), it is so much the emotional pain it all brings. We are here for you, and when it is my day, or week, of feeling the lowest, I know you will all be here for me.
I am in Sumner Co. North of you but still middle TN. I am an RN and I heard the desperation in your post. I am still able to get away for a short trip and have awesome support here with my daughter. If you need me to drive down, just to talk, please just say the word. As I said before, I do have to be back here by Tues eve due to obligations here. I was so hoping your surgery was on Monday. God's blessings on you during your time of surgery and recuperation.
Aunt B - yes you are so nice to want to contact me personally. You can get my e-mail from my account page. I don't know how to get anyone's e-mail - I hope you do. Be nice to meet you and yes, Nashville is about 75 miles from where I live. About 1 1/2 hours, traffic allowing, of course on I-24
flo39 - a couple years ago someone mentioned they take an herbal supplement for depression call Serentiy Formula. I bought and took it for a few months. It really did help without the drug effects.
So sorry Flo, I feel your pain in your post....hugs all around. I can only echo what the others have said, and hope you find something to help you get through the bad times. Best wishes and prayers for your surgery...
I walk around the room talking to myself..asking myself, "what have I done to DH..putting him is a N/H, crying bucket fulls " he looks so sad and much more frail and older to me now when i visit. I see him declining faster....this life with AD stinks..I hate it!
Julia - you did nothing wrong. You did what was best for him and YOU. Now you can spend quality time with him and let others take care of the dirty work. Remember that.
flo39 - ah, yes, I well remember yelling at the air 'just give me back my life.' Except for Aunt B we can do little more than express our understanding, that we recognize your every word because we've been there ourselves, to let you know that are not alone, others are with you. I believe it helps just to know that. My best hopes and strength for your surgery. Betty
Thanks again to everyone. My struggle goes on but I do intend to ask my pcp about something so I can sleep. last night was another of those two hour sleeps that dh has. I must ask about something that will keep him asleep all night. He will sleep about two or so hours then is up and wanting to "dress for work". This is repeated after I get him back to bed and asleep for maybe an hour or so. It is hard for me to be very understanding, I'm afraid when these nights occur. My dear son came this p.m. with the book he ordered for me "Learning to speak Alzheimers" Hopefully I will have time to read some while I can't do all the things I need to next week. This p.m. I went to the ALF that has what they call a "Lantern Wing". It is very neat and clean and only 10 minutes from our house. I asked about trained staff, etc and will be visiting again to talk with the director. DH is not near to that stage but I wanted to be proactive. He has regressed so rapidly in the past few months I can't be sure when I won't be capable of caring for him. Our son who is very optimistic has agreed that his dad is going down rapidly. I just can't think of the time when I will have to part with him.
I sent you an e-mail last eve....let me know on here if you did not get it. Hope the e-mail address was correct. Good night....hope you get a little more sleep tonight!
Charlotte...thank you. I visited him today, while i was there he had one of those memory tests...failed miserbly. They said they are giving him respiradal twice a day now due to increased agitation Son and i took him out to lunch...it was so hard to get away...hate fibbing to him to get away.