This sounds pretty strange even to me (and I'm writing this!), but I need to know—do any of you ever feel like there is something like an invisible force field keeping you at home, even when you are able to leave? Today DH's aide is here, and I could go out, but a combination of fatigue, not wanting to go out by myself again, and something I can't quite put a finger on is keeping me at home. Part of me really wants to go out, but another part of me just doesn't want the "aloneness" of hours out by myself. I mean, it's really not much fun to go out to the movies or go out to eat by myself, although I have done both. Even shopping is so much more fun when you have somebody with you. But everywhere I go, I'm alone. Part of this problem could be that it's a preview to what it will be like when there is no DH to come home to. Right now, inside me I'm screaming that I-want-out-of-this-house!, but another part of me is stuck right here. It's not just depression, although I'm sure that's part of it. But I used to have this same feeling years ago when DH was gone on business for weeks at a time. Sometimes I'm okay once I get out, but it's like I just can't move to get out, if you know what I mean.
Jan-I think I understand what you mean. It gets tiresome when you have to make all the decisions. There is no one to make you happy. If you want something to happen it is all on your shoulders to make it happen. Wouldn't it be great it a friend would call you and say "lets go out for lunch next week when the aide is with your husband".
Yikes, I hope when I get my 10 hours respite next week I do not feel that way. It is true that I will be alone, and have planned a shopping and hours of laying in the shade at the beach, and swimming.
Somehow I can really understand this Jan. Maybe I will pretend you are all with me as I take a break.
I think it's that you've been stuck for so long that a fear grows of stepping out. Your enthusiasm may have been repressed from years of having to repress it, and you almost feel like a dog that's been kept in a closet for too long without socialization. When the opportunities begin to come back, it just may take some of us some time to practice stretching our wings, and we might need to take baby steps.
I believe you are so right, Emily. I was always very social in my career - had to be-. When I retired early to be with DH after DX, I was bored out of my mind. But we could travel then and go out to places. Then...very quickly it was no travel, no going out at night and we are now down to only going out for lunch. I feel like I've been pushed under a bridge.
Yes, Jan... I know the feeling. I can now go when I want to but I find myself staying home. I love shopping by myself but it has been years since I wasn't part of a couple. I still haven't gone to a restaurant and even in church I feel incomplete.
Bama*, I know what you mean. We are incomplete. I can forget for a while when I am with friends. I sit with old high school friends in Sunday School and Church so I have a connection. I take restaurant food home to eat some and take my Kindle when I'd rather go out to eat than cook. I have no desire to cook with him gone. I find Lean Cuisine and sandwiches are quick and easy at home now.
Now that I can do what I want when I want, I still stay home a lot! I AM traveling though. Visiting my children (my daughter who lives in England - I visited for her spring break) and other Alzheimer's widows from here at Joan's. Sometimes the house does close in on me with memories of the last two years, and I can't bear it.
What I would look forward to if I wasn't in this "prison" is taking some classes. When I am out shopping on Wed. when the gal comes to be with my dh and I go in the fabric store and all these gals are there making such cute things...I would give anything if I could do that again. Now that he doesn't want to go grocery shopping with me and other misc. shopping chores I need to do...I do it on Weds. and that does not leave me anytime for anything I want to do....WHEN IS MY TURN??? I'm really on my "pity pot" today....poor me.
I've taken my 90 yr old sister w/walker & c o 2 to the doctor this a.m. and audiologist this p.m. This a.m. took dh along so could take both to mickey d's for breakfast. This p.m. dh stayed home and I was antsy all the time as to his welfare. Hope tomorrow to go to water exercise but only stay 1 1/2 hrs. so can get home to see about him. Just sayin' I'm so tired.
When you're in the phase where your spouse is cognitively impaired but still willing and relatively able to accompany you to the grocery store, to lunch, to various other errands, you ARE very much hampered in your flexibility and mobility, but you DO have that person with you to keep you sort of grounded and focused. Probably he/she needs you to help him with his lunch, and to take his arm as you walk the store aisles. So your life is limited, but it has a focus. For that time you're finding some definition in being caregiver for that person you take everywhere, even if the errands are of your own choosing.
So...then you find yourself free to go out alone. But who are you in relationship to this world, just you alone? It feels vulnerable and unsettling. It will take some time to adjust as you reestablish your sense of being ok alone.
Now I can go and come as I please, but some days I'd rather stay home and read or make sorting, tossing, donating piles. In fact, now almost a month since hb's passing, that's a stronger feeling than before maybe that's because I know I don't HAVE to go out for stress relief. Force field? I substitute teach when called and substitute when needed as an admin assistant for a company I worked for until I had to quit for the caregiving job. I'm blessed w/friends who "stayed" with us during the journey and continue to attend organization meetings. I go to a movie, shop or whatever I decide I want to do at the moment. I don't usually choose to eat in a restaurant by myself--that will take some getting used to--unless I have a book w/me. AND, a very big thought for me: I would NEVER want to marry again, but I don't think I'd mind going out to eat w/a male friend. Small community means that won't happen; so I'll continue to carry a book with me.
One of my sisters took care of her husband w/lung cancer always at home with very little help. After his passing she took our older (90 yr.old) sister w/Parkinson disease to live with her until she passed amost two yrs. later. When she was alone she told me she had to decide what she was going to do with her life either stay home and grieve or make a new life. She has a good network of friends and appears to be making the most of what is. She was a caregiver for a long time but she says she doesn't regret a day of it. When I feel weary and get short tempered with sister and/or dh I stop and wonder who will care for me if I should need care and if they will treat me kindly. Guess I'm trying to sew some good seeds for my future care if truly "what goes around --------
Good thought, flo39. I'd best be sweet to nearby family and make them feel "obligated" to take good care of me--perhaps in 20 years;) chortle. Granddaughter and her husband already do a good job of checking on me, visiting, inviting for meals, etc. and making sure I spend some time w/their 2 kids; so they'll remember me. HA they're 1 & 2 1/2 now so doubt they'll remember these days, but hope there are many more. They live about a mile down the road. Daughter lives 1/2 mile, but I don't see much of her as she still homeschools two kids and has a profoundly handicapped daughter.
There is no way I would want the confinement this horrible AD condition has placed on me for years to become a part of anyone I know let alone on anyone I love, like my children. Place me...Place me..take me kicking and screaming if you have to and don't feel quilty at all. I have had my life and now it is your turn. Please, please...place me or hire help...whatever..but, don't take over the care of me...I have had this talk with both my girls. When I had this talk with my girls they both cried and so did I...but, I made them promise to just come and visit...but don't take over the care for me.
I'm with you Judith, and part of my long-term strategy is to try to have the funds in place so I can do just that. As soon as I had an inkling, I'd be picking the place.
Exactly so. By family "taking care" I should have clarified: suitable placement NOT with any of them. ALF while I can choose and then skilled nursing connected with ALF and then...but NEVER w/family members. And, if perchance an accident happens before I make my selection, they are to place me. Yup, no need to add burden of direct caregiving to family members.
We are all at sea....on the one hand we wish someone would invite us out for lunch or a movie...and it doesn't happen...and then we could make the call but I think we fear that the other person would " have other plans" which means they really don't want to be around disease....so we do go shopping alone and our only socializing then is with sales clerks or grocery baggers and checkers...add to all of this, we see others who are out with friends of a spouse dining or movies or strolling along...and we are well just out there like spectators trying to figure it all out..
I certainly never want to have to be carried for by any family member! I tease my batchelor son that I'll just live with him because he has an extra bedroom. Not! I'm just teasing for sure. But other arrangements have to be made for where I'll be living and someone has to do that. My sister has funds so she is in ALF but I still take her to doctor appts. and do her errands. I have never told her I wouldn't move her to a nursing home if she no longer qualifies for ALF because I don't know what might be in her future. I have just told her I will see she is well carried for which is all I meant by someone caring for me. We have family members who made such a promise (no nursing home) to their mother and it was a nightmare existence for both when she became unable to live alone. Only a year or two after her passing both women have had strokes and are disabled. Now that might have happened anyway but the nightmare they were living the last few years could also have contributed. I pray I'll be like my dear mom who "lived until she died" from a heart attack at age 87. Fully aware and living independently until her final day.