My life (as well as yours -probably) has been a challenge. First getting through high school and college financially, singly financing my wedding after making my own wedding dress, raising 3 sons on a school teachers salaries ( mine and my spouses), getting the boys through college,etc. Plus many various traumatic life experiences. But now I think I have gone into some kind of shock with his having been in the nursing home for over a month.. Tonight it occurred to me that I no longer have anything to aspire to. I sit by myself at home and am pretty baffled. It's hard to get going on much of anything. But doing a continual pity party is nonproductive. My heart bleeds for my poor spouse who is alert enough to miss me terribly and knows he is in bad shape. I'm sure the same thing has happened to most of you. How do you snap yourselves out of it? If my husband gets to the point where he isn't so aware it will a lot easier. Then , hopefully,it will be like being out of limbo for me because there won't be so much unfinished business. hopefully!
midwestmn you are correct when you say a continual party is nonproductive. You have to go back to square one and reinvent yourself. Accept that things will not be as planned and go on from there. This might even be the time when you develope skills you never knew you had. Emily is doing that.
midwestmn--You're normal for where you are on this road. Relax; take a deep breath. You didn't get to this point in a month, and it's going to take a while to adjust. What i did was to recognize that and make up my mind to take the pressure off me and keep it off, where ever and whenever possible. Deadlines would be met, but otherwise things would get done when they got done. If a nap took over, I napped. If I was awake and busy at midnight, thart's what it was. A pity party will just delay things . It won't help in any way. But, rest, and doing small things that please you, will help bring you through. Treat yourself--that special tea; some flowers; a latte. Your DH is wherehe needs to be, and so are you. The aspirations will come, when you're ready for them. Tghere is no set time framefor this. When my DH was fretting about not keeping a normal day/night schedule, his Dr. said not to worry about that. "As long as you can be up when you have to be (a Dr. appt), when you're up or sleeping doesn't matter. It's not written down anywhere. Some societies have a midday rest time as a part of their normal schedule." That outlook works for our recovery time as well.
I'm holding onto the belief that this is just going to be a long process. I don't think snapping out of it ever happens in real life. The only road, as far as I can tell, that doesn't involves some kind of complete denial is to take one step at a time, appreciate the smallest pleasures as much as you can, find a thing or two that interests you and start doing it, and forgive yourself for not being magically renewed.
I also believe it depends on how long you were caregiving. I took care of my parents before and after my husband's dx, so all together, it totaled about 13 years. Not all full-time, but I had to curtail my own activities during those years in order to have time/energy for my family. After both my Dad passed and I placed my husband within the same 2-month period, I felt like a bird let out of a cage. I think we each respond somewhat differently, depending on the individual circumstances.
I was a caregiver for him long before anyone else was aware of his illness. Which was many years. It was a relief to have him placed, but now so many things have developed such as his wandering and going in to other presidents rooms.. Tonight he was pretty belligerent about my hiding something from him that he should know. And he wants to come home and get some things. So it's starting to sound like it's my fault. I go in the afternoon as it's easier for me, but if he's sundowning I should probably come in the mornings? My apologies for all the different threads in this message.
midwestmn, a good way to get your mind on something different ( a diversion) might be to see if you could volunteer at your local school. I'm sure there are many children who could use your teaching skills as well as you could find a way to spend time out of this alz misery. having even just one child to tutor and mentor could be just what you need to find some happiness or at least divert your mind for a few hours. I know from experience that it's so hard when they get it in their head that you have done something that you haven't and there is just no way to convince them otherwise. It usually passes and they can't remember the incidence but we have to deal with it for much longer, until we can work it out in our head or move on to the next thing that they throw us. Hope you start to feel less pain soon.
midwestmn thank you for this thread. As I am in the process of placement, I so appreciate it. What really stood out to me, is , that he is STILL ALERT ENOUGH TO MISS YOU<, but knows what bad shape he is in. That sounds just like here. I know he will miss me, and I him. But I am weak and getting weaker. I shall now update on my other thread, but just wanted to tell you how glad I am to read what you and all these others have to say.
Thanks to all of you for responding to my entry. I really have gotten SO much comfort from you. More than from friends, pastors, syblings, etc. And Dorie ,as you predicted, he didn't remember any of it when I went in this morning. It is my 80th birthday tomorrow, but of course I didn't let him know as he would have felt so badly that he hadn't remembered - not that he always did before. Two of our boys are taking me to "the stage play "Bye, bye birdie" tomorrow night though and I am thrilled about that. I'm going to be gone for the weekend and here's hoping he doesn't miss me at all!
I have just started the search for places for DH to get on a waiting list..I don't think HE needs placement yet but if I were to get sick or if something with him changed quickly I would be up a creek...so yesterday I saw 3 places...One was perfect except for one thing...DH is on insulin and in a couple of places if the patient can't go off insulin some places will not take them..then I saw a private home and it was nice, takes 6 people,family style but not much in terms of activity that I could see. Went to those places twice. The third was like a 5 star hotel..wonderful place but costly and the insulin issue...so I'll be going around with an agent that deals with helping with the process to see other places. One thing I did learn, prior to even getting on a waiting list it is required that the LO have a chest film and TB test..if the x ray is clear than the TB test can be waived...so much to do just to get started...In our case the facilities need the PCP report which in fact would be more informative it if came from the cardiologist and neuro......The places I saw either provided furniture for the room or you could b ring in your own...one place we saw was very costly, insulin was an issue and you had to provide your own furniture...that one is off the list.
Midwestmn--We share a birthday! Today is mine as well. I have been "treated like a queen" by friends and family--two delicious birthday dinners out this week, with a third tonight. Many cards, phone calls, emails and a lovely gift. I'm a lucky woman. Hope your day was nice today.
Coco, what is your other thread? What do you mean by your "getting weaker" comment about yourself? I had a great birthday celebration, but I found myself feeling lost because he wasn't there. I was so much happier driving home than driving to my sons. I suppose that is what grieving is. Again, that's probably another thread. 'Hope your journey is defining itself.
I too have made the decision to place my husband. I actually feel relieved. I am looking at an assisted living but they have a nursing home that he can be moved to when the time comes. He fully understands what I am doing and is not fighting me so that is good. I just tell him that he needs more care than what I can offer. After New Years I will begin the process. I have to shop for funerals, visit the assisted living and talk to my financial advisor. This was the most difficult decision I have ever had to make but once I decided I do feel better.
It is a traumatic time. Our preplanned funerals I saw to a while ago and hopefully the financial end of it will work out. Our son is administering that end of it. He lives 200 miles away.. He is being very critical of me in regard to Dad. As though it weren't enough to have this adjustment to the nursing home going on for all of us. it is even more hurtful to have a son who thinks he is totally in knowledge of details and judging me according to his insight. When I say I miss Dad, he says "Well, why don't you bring him home then." Is this whiney on my part or not? My heart breaks. I have even thought about taking Dad home, but my back and health will not take it. I know now why people at the end of life wish for it to be over.
midwestmn, I heard that from my husband's son, and when I said to him, "I can't manage your father on my own, but if you'd like to help - you can even move in if you'd like to," no more was said.
Mary75, that is a great come-back. My problem was that his son (in Florida) insisted there was nothing wrong with his father, but had not seen him n 2 years. He was judging his condition by his conversations over the phone,.. when HE (son) did all the talking and his father would say, "Good, Great, OK, Fine, Uh-huh...." I'd ask son what his father had said and he couldn't recall, but said he sounded fine to him.
midwestmn, I feel so sad for you that you had to have that awful remark, it was just so unthoughtful and ignorant. I don't mean to diss your son but I am really mad he said that.
because of this in my life also, I am keeping our whole saga with my guy quiet. Until it is finalized and he is where he needs to be , they know nothing. TRY SPENDING JUST 24 HOURS DOING WHAT WE DO, JUST TRY IT!! Ok, how about a WEEK!!! They would fall apart.
As if we do not feel bad enough. This is one of the worst parts when there is unsupportive and ignorant family members. I wish I could be there with you just to hug you and tell you to hang on, that hopefully it will smooth over.
Coco, your warm hugs come through over the internet and give me such comfort. I am much better today as I slept well last night. Was with lo before, during, and after dinner. The director of Nursing there said again that he is much more content when he doesn't see me so often. The thing is I am not. We just hug and hug when I get there. It's time again for me to put on my big girl shoes to do what's good for me. He calls me in the evening to ask me to come and get him the next morning and then evidently goes quietly to bed. Thanks also to all you dear people who care enough to send your comforting words.