I have been urged to get time for myself and I have gone away for a few days at a time to the woods, or a friends. I have thought about a short trip for a long time and finally committed to one for tomorrow. I will be off to Philadelphia for four days of sketching at the art museum, listening to the Wannamker organ recitals and visiting Reading Terminal Market. Hauts of my early life and important places in my heart.
My husband and I traveled frequently. It was a passion we shared. This time I am really going somewhere without him. He will be with his daughter, the dog with the groomer and the cat at his "friend's" house. Everything taken care of and I am upset. I think it is because I am doing this alone, going to the hotel we enjoyed in the past. I don't want to be without him and yet we know he couldn't handle the trip, he wants me to go, etc. Don't like where I am in my thoughts. Someone just tell me this is OK and it will be alright once I am there. I think it will be. Have always anticipated travel with pleasure and now it is.............hmmm. I don't know what.
Actually, I think it is very healthy that you are doing something for yourself. Suggestion: It sounds like he has done this trip with you in the past. Try adding in doing one thing that you have always wanted to do but never did because he wasn't really interested or you didn't think he would like it. That way while part of it may be bittersweet you will also add a new, fresh and something different to your memories.
It is very healthy for us caregivers to do something for ourselves. It rejuvenates us and helps us get through some of the difficult moments.
Its only natural to have sad feelings visiting a second time without our spouses, maybe because its a precursor to the 'final' chapter' of really being alone after death? kind of a test run to see how it goes. i dread one day visiting sorrento italy again, we honeymooned there for sure i will go again to reminise someday as well as santorini in the greek isles -most beautiful place on earth i believe. it will be a profound experience and one of the most challenging but i will do it. you must try to find things to stay busy and take your mind off AD every so often. it helps be a much better caregiver.enjoy your trip best you can! divvi
Metomorphis-I wish I could join you. I climbed the steps of the art museum long before Rocky Balboa ever did. As a child took the subway down town to the same department stores. Met people at the eagle. Do you remember Wanna frost. I used to go to Leary's used book store and lug home a stack wrapped in string. On Friday night on his way home from work my dad would stop at Redding Terminal to buy flowers for my Mom and some wonderful dried pears for me. My DH graduated from Temple and I from Albert Einstein Medical Center, Our stories were not meant to end like this. I have a lovely home in Florida and many friends. In the end I am still alone with broken dream.
You know about meeting at the eagle. You know Philadelphia. The art museum is a treasure. I went there as a little girl with my mom. I know the original location of the Liberty Bell in Independence Hall - the NP guide told me he know how old I am by knowing that bit of trivia. Reading Terminal Market - scrapple and Christmas purchases. I still put a marzipan pig on the Christmas tree that I bought there when I was 12. http://www.readingterminalmarket.org/ - and Bassetts cherry vanilla ice cream - truly the best in the world.
We didn't marry until I was 36, so am use to/comfortable doing things on my own. I'll just take it one step at a time. It will be OK. I will make it OK.
Wanna frost was served in the basement of Wannamakers' Dept store. It was the first frozen custard (not that awful soft serve stuff), It was served in a tall metal tulip shaped dish with a long metal spoon-plastic had not yet been invented :) Thanks for the memories-all good
bluedaze, honest, you aren't old enough for before plastic. <grin> They just didn't make long spoons out of the stuff. But they did make toys, certainly by 1900 and probably for at least 25 years before that. Lucite and Bakelite are really, really old.
Metamorphosis, I wish I could find a way to actually do a trip, or even a one day bus trip. My community will be going to Philadelphia, soon, for a one day trip, but that is too long to leave him alone. I actually did it when the Allentown Art Museum sponsored a trip to Philadelphia for a special exhibit about 6 months ago. Just not an option at this point in time.
But I am still thinking in terms of respite. I don't know how I'd do in terms of travelling alone.
I recently travelled alone with another AD "true" widow. I'm not sure what kind of widow I am. It felt very strange sharing space with a stranger but I felt it needed doing. Would I do it again-I don't know. I have travelled with my daughters and that worked out well. I mentioned it before-but I will again-Anna Davidson's book "A Curious Kind of Widow". She lived through it all and came out a winner.
I haven't traveled solo yet, but Sunday evening I went to my high school class reunion (45th) alone. My husband's brother stayed with him so I could go. Since we married young (19 & 20) even going out for an evening alone is a huge step for me...and since virtually everyone knows him (we went to the same high school), I was asked over and over where he was...pretty obvious many thought we must have split up! I am much happier that I went than if I had chosen not to, but it was a strange feeling and I realized this is how it will be all the time at some point. It seemed especially hard when it was time to go home, and I walked out the door alone. I guess it will get easier, but I am out of practice being just me and not us.
We need to coin a word for what we are. I like the married widow (widower) idea but want something snazzier. How about being a midow (midower)? It is kind of like going through a yellow light just as it turns red. My sister calls that rello....
Each thing we do solo gives us something outside of the AD world we are trapped in. It is good to think of something else. A police person friend of mine once said that he was consorting with criminals so much that everyone began to look like a criminal to him. I have found that when I see someone who exhibits some of the early symptoms (forgetting, vagueness, etc.) that I immediately think of AD and wonder when it could really be something else.
Its a good thing I work full time - it really does help to keep me grounded. It is also a good thing that I really like what I do.
Now MissB, that would leave those of us with dementia spouses without a title. Midow sounds great. How creative. It would be a great conversation starter.
Tonight I went to dinner and a movie by myself. A first. I lied to my DH -- another first --and told him that i was going out with a friend who needed some counsel. A caregiver was here with my DH - she took him shopping and made him dinner. It feels so strange.
How long was it before you could take a break without spending all your time thinking about how your loved one is doing? I think about my wife all the time when I am at work. I would think about her before she got ALZ a few times a day. Now I find myself thinking about her even more. I call her several times a day because my father told me she is much happier after I call. That she will come get him and tell him she is ready to go for a walk.
We learned that she has ALZ in April of last year and that she was more than likely somewhere between her 3rd and 4th year. Her memory is pretty bad in almost everything, but she does well socially. She loves to go out to eat and to see friends. But she can't tell you what she just said a minute before and just sits or lays down most of the day. She seems to be tired more lately. I think she just doesn't what to do so with herself. I take her to the movies which we have always enjoyed together in the past and she still enjoys going, but she can't remember going once we get home. She washes clothe as soon as I take them off. She will wash if it is only one shirt. I think it is something she can do that makes her useful and she is comfortable with.
I am starting to ramble I think. Anyhow, I have been thinking of going on a golf weekend with some friends but I'm not sure if I would be able to enjoy it, and wouldn't want to ruin it for my friends. I know I will be wondering what Kathryn is doing the whole time and if she is ok.
Anchor20 I have not seen you post here before. Welcome to this site. My wife is still in the early stages. I am going out of town on Monday without my wife just for one day. I have a friend that will check on her while I am gone. I think as they become more dependant on US the caregiver the less they like it when we are not around. I hope to hear more about your situation in the future post.
I've travelled a lot by myself or with friends; my husband never liked it in recent years (probably a reaction to too many car trips with three squabbling kids in back) so I learned to cope well on my own. Last summer I left him with my daughter and some agency care while I went up to our usual summer destination.. it worked out part of the time but he had a TIA and I had to come home to deal with that. I'm still going to try it again this July, with a bit more (and more trusted) help. I know he won't care if I'm gone; he's not emotionally dependent upon me or I upon him; he is just physically dependent.
Welcome Anchor20. in many ways i think its more difficult for us to leave for respite time rather than them. i posted in another thread how my DH stood at the door for several times when i would leave for 4hrs 'free' time for myself on fridays. the first times were excruiating but slowly over now a yr ago, its become the standard and he is quite fine with my leaving him in the aides hands. i worried the whole time the first few weeks and sat in the driveway in my car for over 20min sometimes 'expecting' to see him appear looking for me. i was much relieved to know he was nicely distracted and eating a candy bar:) i would suggest you try a few hrs out during the day a couple of times/wk at first to get your spouse used to your absense, and of course YOU used to being out alone:) then once that is working nicely and you see your wife does fine with outside help, your weekend golfing should be a super respite for you without all the compounded worries. it will renew your spirit and make the caregiving easier in the long run. hope it works out, divvi
Anchor20, welcome, but sorry for the reason you have to join us. It's good to have another man on board. My wife (of 55 years) is farther along than yours. For the past 2 years I have not been able to leave her alone. For the past year she has been going to an adult care center 3 days a week so I can exercise, shop, etc. At first she wasn't sure she liked the idea, but now when we get there she goes right to her usual chair and starts drinking the coffee the staff has given her. She barely notices that I leave. When I get back for her, she gives me a smile, and says "Oh, so there you are". There have been a couple of times that she has not wanted to leave with me because of some activity they are doing.
She does no work of any sort around the house. Just sits in her chair and sleeps. She would sleep all day, and all night, if I would let her. Last October I left her in the care of her younger sister for 3 days and it went well. I did call once or twice a day to be sure they were OK.
You need time for yourself. From your post you are still working. That can be a big help. I am retired, so don't have that outlet.
My wife was diagnosed last fall,second marriage an she has four boys one lives in Fla an three within 30 miles of her,I've been with her 24 7 for about two an ahalf years with no help from any of them,I can't understand how kids can treat their mother like that,she is on Arecipt an Namenda an still thinks there are people in the house,doesn't remember eating dinner most of the time an usually asks me where I live or what her phone # is or her address,I can't leave her alone,I've found windows open in the winter an windows open with the air on in the summer,sorry I'm going on but this is the only place people understand what we're going thru,golden years yuck
ol don-have you asked for help. Her children might feel they are interfering. My kids are great-but have to be gently reminded to visit Dad. I am very reluctant to ask for heip-kinda like saving it up for when the next crisis occurs.
Thank you all, I believe I will be a participating member of this site for many years to come. At this time I have very little knowledge and I am afraid I will be more of a taker than a giver. But as time goes by I hope to gain as much knowledge as possible and be able to take a greater part in giving back.
I do leave each day for eight hours to work. However, much of that time Kathryn is asleep as I go to work very early. My Father is there when she wakes up and sees that she eats and doesn't leave by herself. They take walks each day. The other day she woke him up to take their walk at 5:00 am. He told her they couldn't walk until it was light out.
I think the thing that hurts me the most is when Kathryn just sits and rocks and has a look on her face that says she is confused and doesn't understand what she should be doing. I know I can't be sure what is happening in her mind at those times. But it makes me feel like she isn't in there. Makes me want to cry for her.
ol don: My whole journey with my DW was only 3-1/2 years. I was the 24/7 guy for her last six months (she died in Feb). We had two sons, 30 and 31. I held them in reserve. I knew that they had no idea of how to help. I also knew that when I asked for specific help, they would do whatever I needed. Towards the end, I was exhausted and stressed when I called on them. They came through wonderfully. I often thought that it would have been better to have daughters as women would magically know what to do and how to help. With men you have to be explicit. If you haven't tried it yet, try questions like "I need you here on Tuesday at 4:00PM for three hours or until I get back". Good luck in enlisting their aid. If you get a break, it will give you strength for the ongoing days ahead.
Jim, I welcomed you in the 1st sticker when you posted there, but welcome again! All you guys deserve a medal for your dedication! It gets harder as they go through the stages and there are several discussions that you may find helpful. Plus there are some special features on Joan's website that I would recommend you reading as well. Like you, I work and have a family member staying here during the day and there are three of us on weekends and evenings to take care of him. This is a monsterous task, but with each other's help, we'll make it! (((HUGS)))
ol don--I agree with dking. Get her sons involved--if only a little. Be explicit. You don't have to fill them in completely, but let them know you need them to provide some assistance. With 3 so close, certainly they could take turns giving you an evening or a Saturday. If you have to play the economics card--you "have to work" or . . . Also, this would bring them into the loop of what's going on and "how she is". It could possibly reduce issues wth them later. Mixed family dynamics can be hard, because they may stay away because they don't want to be seen to be interferring, or because they think you don't want them involved. Or they may be selfish snots who can't be bothered. You're no worse off if you try enlisting their help, and you might become better off.
Have you talked with them about what is happening in their Mothers life? It's easy for people to ignore something they don't understand. Maybe you could send them a copy of "The 36 Hour Day" along with a reminder that their Mother gave them twenty years of her life while they were growing up and that it is time for them to give some back. It may not help get them involved, but it sounds to me like it couldn't do any harm. At the very least they will understand what is happening and it will take away the excuse that they didn't know. And they will know in their own mind that they can either do right or do wrong by their Mother.
Anchor20, Welcome. My Dh was also dx'd in the early spring. He has late stage 4 FTD. I found myself thinking about him so often at work that I had to make the decision to stay home. I was a medical assistant and very afraid of making a mistake that would harm someone. So I understand.