I havent been on here in months, I was so upset for months after I placed my DH I couldnt get on, I was so tortured. Lonesome,sad,depressed,confused, relieved,guilty,unhappy, tired, no exhausted, my thoughts were so jumbled. I had to get me a counselor and she assured me I would get through it. I just had to let things jel. SO they have jelled, and I realize it was the right thing to do. I was really burned out, as I know many of you are. My DH is doing fine. He doesnt verbalize much, he does still call my name sometimes. Im trying to get back into this thing called life. I see him everyday, then I focus on other things that need done. The list is endless,!I just want to encourage you that are still in the battle at home! Just go for it when you think it is appropriate!
It's good to hear from you again--yes, the burn out. How well do I remember. Glad you found a counselor who was helpful--so many of them don't "get it." That's why so many of us are on this forum, of course. (Now I'm jumping over to the other thread you started on Medicaid.)
Ky caregiver... My husband was placed 3 months ago, with the VA paying for the first 30 days "respite". I started doing the Medicaid thing, have turned in everything I was asked for (the social worker at the nursing home has been a real help to me). A couple of days ago, I received mail with a form stating that was something was not turned in...I was so upset that I haven't even looked at it again. Whatever ii is, what the H--- do they want? What do they expect? The social worker has been on vacation, so I need to contact her again! The Medicaid will be paid to the home retroactive if it ever gets approved. I'm tired of this crap.
I haven't been here since early July & then very briefly. I have my fourth chemotherapy treatment tomorrow, & for at least a week & a half, I'm pretty much good for nothing. Last time it seemed to take a couple of days more & I felt it more. When I'm like that, not much interests me, hence my lack of activity. I don't get to see Dan a lot, but went this afternoon. They are giving him some therapy...PT, OT, & whatever else they think he needs. He was good today! He looks better, he talks a little clearer, just an improvement. Not the memory of course, but behavior.
I guess my little first paragraph rant was to let you know that the wheels turn slowly, especially with government stuff! And when I feel crummy, I don't even care what they want! I need to be more vigilant though, because no way can I have Dan at home again. I think I'm the odd man out here...I felt guilty placing him, really had no other choice, but I am rather enjoying (doesn't seem like the right word) my solitude. I can see that it is the best for both of us.
Sorry if I seem to be rambling....chemo brain is a reality! It does mess with the thinking process (oh dear!).
Ky caregiver. Glad to see you are back. You did the right thing seeing a counselor. I honestly did not have the presence of mind to do that but yes indeed the feelings were all over the place. Adjusting to a new normal,is not easy and placement is certainly a new normal. It sounds like you are doing just fine.
Mim, you are one strong person to be dealing with what you are. Medicaid was a nightmare for me and caused me so much anxiety I cannot even hardly talk about it to,this day. Unless one has had to deal with this bureaucracy it is difficult to put it into words. I paid a lawyer because my efforts were going no where. You are fortunate to have the social worker. I tell you though once the lawyer called and said it was approved, I felt like celebrating. It took 4 months for my husband to,get approved.
Mim, you are not the "odd man out". I too felt a relief when I placed my husband and my home once again became a sanctuary, not a prison. It's been 3+ years now and though I am so very sad and probably have a little depression related to this ongoing tortuous process, my home still is a quiet and peaceful sanctuary for me. Don't ever feel guilty for those feelings.
Fiona, thank you so much for those words. Of course, it brought tears to my eyes (I got teary-eyed at a comment from Lindylou also, must be feeling extra emotional today!), but I am glad that you share those same feelings. If I tell too many people that I am peaceful at home, they look at me like I've grown another head...therefore, I don't tell anymore!
Yes I feel pretty peaceful at home, most of the time . I got a call Thursday that my husband was approved for Medicaid! Finally, after 10 months plus! I do feel a sense of relief, that was quite a sum I was getting all those bills for! That would frighten anyone! Praise God! I'm so thankful that My DH is adapting so well , so happy it's two blocks away and I can visit often! I do want to visit often, feel I can do that! That's a breeze after all I been through, you all know what I'm talking about! Bless each of you on your journey!
I am so happy ,DH was approved for Medicaid, that takes a huge load off,! I am worried about myself, I'm having problems being alone. I m pretty lonesome although I see him every day, I went to church today but may not go back. I cries all morning,. I just feel so unnecessary,. 70 and don't know what todo with myself ,. It's been al oat a yr and I still haven't adjusted,!
Ky caregiver, I also placed my husband about 10 months ago right after the Thanksgiving holiday. It's been a tough road and I also get lonely, but in a different way. I still have a son at home in high school and with the burden of his father no longer in the house, it has become peaceful again for both of us. He is back to being a normal teenager out with his friends and socializing (as he should), going to school and working. I still work too so I get interaction there but I have been very lonely at home. I know I did the right thing by placing him, but I have been struggling with depression and not wanting to do anything or go anywhere. I visit my husband only a couple of times a week. Sometimes when I go I become more depressed and sad about what once was but will never be again. I try to focus on happy things but that doesn't always work either. I'm glad you found yourself a counselor. I need one but haven't found the right fit. I just want to encourage to take one day at a time. You've been through a lot and it's ok to be sad and cry. I've sometimes felt like I've compartmentalized all this pain and sorrow just so I can get through the work day and perform that I'm to the point where I can't feel much at all. Then out of the blue, something will upset me and the tears won't stop. I've had 2 days like that when I had to leave work because I just couldn't control it and deal with anything. I think we all have to learn to cope with it in our own way and on our own time table. You are special and there's nobody like you in the whole world, so treat yourself that way and know that you will come through this. Just take one day at a time. You can do this! Everyone here understands and supports you.
Oh my bless your heart! You must be so young! And your husband! I think I would be better off working. If I had the energy! That is time you must focus on something else,! Just know you have to work and you had to place your husband. I know this is hard for all. I feel like such a wimp complaining, especially wen I read about someone like you,! With a child I the home! Hang in there, secs do this! God Bless!
Ky caregiver, For all I rant about my partner's family, I have been lucky to have found support from my church. This is how I did it. First I looked for what I needed most. For me it was socialization. So I told people what I need more than anything else is to be with people. I invited people to invite themselves over for a meal or a walk. Sometimes I just go ahead and invite them myself. I limit the time talked about AD. (Except for one friend, who is is the same situation as I am, and we seem to talk about nothing else.) With everyone else we just jibber jabber.
Lunch is easy. Egg salad sandwiches, iced tea, and store bought cookies. Supper can give me a chance to be creative (stuffed pumpkin anyone?)
I know what everyone needs is different. And I know fatigue levels vary. Sometimes I do give myself permission to stay in bed all day. But I find if a friend is coming over, the eggs are put on to boil, and I WILL swiff the living room floor.
My thoughts and prayers go out to you. And to you too, Sassy. Caregiving is not for sissies. And giving care to ourselves is mandatory to survival.
Well I seen a Peacock up in a cotton tree Watched a man eating a bumblebee Danced the jig and heard the Platters But I never once just jibber jabbered
I've had a shoe shine, been to a five and dime Tripped the light fantastic, and had myself a time Know Houdini, know Kimono, know the mad hatter Don't know nothing bout just jibber jabberin
I can dance, I can sing, I can do that swing But obviously I don't know everything Cause I don't even know if it matters That I never once just jibber jabbered
edit - don't mind me. just having some fun. I don't get out much
How about this then?
The day the government didn't lay an egg Was the day they approved my medicaid.
This is a time I thought I would never face. I am too ill to continue caring for my husband. No doctor is sure what's wrong but I can barely meet my own needs even with some home health . I am just home from 2 weeks in the hospital. My husbands kids think I should place him and I agree for my sake but there is so much of him still left he will be very upset. I am so torn up over this. I would appreciate any thoughts or advice. He is 93 and I am 69 . Thank you. I never thought my life could fall apart like this.
I think you'll find he will not be as upset as you fear. They can adjust quickly. He may already be upset right now as he senses that you are not well. Do everyone,including you and his children, a big favour and take care of business by getting him placed. Do you really think that having him remain home and you getting sicker will help anyone?
.muldi, I am close to your age and my huband is 87, so I understand. You must place him for his sake, not for yours. He needs care.that you can no longer give. Be brave and do it. Redirect your energy and help him to settle in and adjust. Make sure he knows you have not abandoned him. If you stick with him and help him, he will be OK.
Mary, roughly the thirties and southern was the tone I was shooting for so you were right there. I actually have heard that phrase here and there but that wasn't funny. I should have said cork tree.
muldi...in March, I was in your place. I am 74 & hubby is 81. I was doing the best I could for him at home, but it was VERY wearing on me...I didn't realize how much until after he was placed. I was diagnosed with ovarian cancer, had surgery, chemotherapy. I knew then that I could never keep him with me while trying to take care of myself & him too. I had to get him placed very quickly (thank you, VA). I dreaded it, our son & I took him & he seemed rather trusting & innocent (that broke my heart). There really hasn't been a huge upset for him. I can't say he likes being there (going on 6 months now), but he hasn't questioned it very much. Once in a while, there will be a desire to "go home", sometimes I guess he questions the staff about why he can't go home, but he hasn't caused an uproar. He truly has no idea how long he's been there or remembers when he saw me last...no concept of time, days or seasons. It takes a little while for them to become more familiar with their new surroundings, I'm not sure if they really adjust or not. It might be more difficult for us than them! It might also depend on how far along they are in this cursed disease. Anyway you must take care of you...you can't help anyone else if you don't care for yourself.
Mim, I hope you are doing better. I can't imagine dealing with your own cancer and caregiving too. I' m glad you were able to get placment quickly. Today has been one of vacillation, hoping I'd feel better and this awful pain would go away and feeling like I can't abandon my husband to a place I know he will hate. Nothing is easy or a good decision.
Whoa! muldi. First, I doubt you are not going to abandon your husband. He needs you to stay by his side and help him go through this difficult move. Second, don't just assume he will hate the place. He may hate things about it and like things about it but you don't know yet.
You have a lot to think about here. In your earlier post, you said your husband had a lot of his old self left so he is likely to be upset by the move. What do you plan to tell him is going on and how much do you think he will understand? Have you selected a place for him yet? What kind of a facility is it? Will he be in a dementia unit? How far away is the place and given your health issues, how often will you be able to visit him? How about his kids? Do they live nearby?
Many of us have been through this and when you put us all together, there is probably someone here who has experienced what you are going through. Let us help you.
Thank you. I am physically helpless to take care of him so his son is taking him next week to a very nice assisted living faciliy where he can have his comupter. and good care. I don't want this, but I do not see an alternative to my survival. He thinks his family will take care of everything, but they are tired of the emergency trips over many miles when I have been in the hospital and feel I deserve a chance at life. They also do not want to care for him. Next week his and daughter plan to tell him they are not able to see to his needs and I am not either and for both our sakes he needs to be in care and I need to get well. They live in Oregon and we live in north Washington state so they are tired of coming up and do not want to move. I will be able to visit 3-4 times a week. He will understand cognitively but not emotionally. Everything has always gone his way and he will be shocked that this isn't. I think some or most of my pain is from the anxiety. But I am feeling the need for anxiety medication almost more than pain medication. Every morning the pain starts when I start moving and thinking.
Muldi = wish we lived closer. I live in the Tri-Cities. I am glad his son is pro-active and helping place him. Praying he surprises everyone and adjust quickly enjoying it.
Well, muldi, I'm sure this will be very hard on you. I completely understand your worry that your husband will be shocked since everything else has always gone his way. But at least he has children who care enough about him to find a good ALF and take on the job of explaining to him why he has to go there. As far as you are concerned I suggest that you try not to let him see your dread of this situation. Believe me, most of us who have gone through this have felt that same dread so we understand and sympathize. But the kindest and most helpful thing you can do now is to act as confident, calm, and positive as possible when you are with him and to assure him that you will be there for him even though you will not be living under the same roof. Hang in there. We are thinking of you.