Wow! I tell you, everyday there is something else that I have to take care of. Gone are the days that I can even think that I can get up and accomplish something that gives me pleasure or joy. Everyday I have another problem to take care of. I sorely miss having a partner to help with this stuff. Actually, he always did most of the day to day stuff and all I had to do is take care of the exotic stuff (setting up computers, printers, etc.). Is this the way it's going to be from here on out? It seems like I never have a moment to just relax and let my hair down. DH has now digressed in memory capability and really cannot finish any task without my intervention (which sometimes he accepts and most times resents). I feel so stressed out that I'm wondering what I can take to make my life seem more wonderful?
I hate to sound like a broken record, but you need to find a few hours, even if it's only one day a week, to do something totally for yourself. If he can be left alone, leave him alone; if he can't be left alone, find someone to "babysit". Go out and get a manicure; go to a movie; go to lunch with a friend; ANYTHING that will get you out of the house, away from him, and away from your responsibilities.
I find that even tho I LOVE to sleep late in the mornings, I am always woken up by "Sheila, I hate to wake you but....". Sometimes it is because he thinks I need to get up for an appointment (which is at 2pm), sometimes it is because he can't work the remote control...."it's always something", (as Gilda Radner would say). The only time I feel like I can relax is if he is either sleeping in his recliner or playing golf. Tonight he slept from 7 till 10:30 and is now going to bed. It has been relaxing, except for the fact that I glance over several times an hour to make sure he is still breathing.
2 out of 3 of our kids are coming on Saturday to give me the Mother's Day present of help around the house. I have a list of chores for them but mostly I will enjoy having them here. DH is kind of p.o.'d cause he said HE can do the stuff they are going to do. Ok....when? He wants to take our son-in-laws to play golf so us girls can do the work....ain't gonna happen this weekend!
Yeah, mine is pretty mad at me at this moment (actually for the last hour or two). Don't know why and I bet he doesn't either. However, I have good reason for joy tonight - daughter #1 is going to take her dad this weekend and I have 24 hours without him (YAY!!!!!) So sad that being away from my man gives me joy these days, but, it does. In the meantime, he can just stay mad at me in the other room and I will watch what I want on the tv and not miss him much at all.
Do any of you have a hard time finding things to talk about with your loved one? I spend so much time with him that I find I run out of things to talk about. I'd rather do whatever it is that I need to do and get together later with him to watch tv. He, of course looks to me for all his entertainment and comfort and gets very upset with me if I don't want to sit around and listen to NOTHING. Does that sound like I'm a bit stressed? I wish I could be more loving and attentive all the time, but, it just isn't always there.
Yep that is the world of us unpaid caregivers for our LOs..At the beginning before I knew what was wrong with him..I thought all the tasks I didn't seem to be able to get finished was all ME..I was the one with the problems...well I had them through his disease that had yet to be diagnosed. No there will be no more partnering in the daily house hold chores that were once shared. I swear if I hear much more of " well YOU need to call...." or YOU need to take out the trash" or " YOU need to do this or that" I think I'll go buy dishes from good will ( never would I destroy my Royal Daulton..Hycinthe Bucket would never approve of that) so that I can go smash them in the back yard( I live on a corner so I have to take cover lest the coppers get called)..but you get the drift... As to DH getting annoyed with my wanting my bil to do a few things he too gets upset because somewhere he knows he used to take care of that. Even when I try to get him to work with bil by saying that bil needs directions but he can lift the heavy stuff or whatever, that doesn't work..so projects still need done... Now the driving, which was not a problem, is starting up..he will say " would you like me to go to get some fried chicken" and of course I would but by the time he would get to the stop sign I can't be sure he would not end up in Monterey instead of Albertsons. I tell him the doctors do not want him driving..I enlisted the help of one today and the others will get the word. I don't want to pull his drivers license but if he does not cooperate they will.
So in a word, no our lives will never be the same..sometimes I go pull weeds, other times I head for my friend's jewelry store and if she is having a lull, then we visit, or I go on my once a week hike with my pal for coffee. Sometimes those breaks are not nearly long enough but for that hour I am not answering for the bazillionteenth time what day it if or no there are no appointments today...
And conversations? I have to be careful of what I do say..he gets too involved and I am usually too pooped to go into long explainations..but it is hard to have a conversation of anything meaningful. Just tonight we were on Skype with the kids and I can't tell you how many times they had to let him know they are in VA and one will be going back to Iceland later in the month...and THEY think he should travel to VA to see them....I think maybe I'll suggest they come here to take him there to visit while I get respite...let them be introduced to travelling with one who is so handicapped...
Got an email from a GF who just admitted her hubby to the NH and so far it has been a smooth transition..and for the first time she is able to have ME time and do the things" I want to do when I want to"..she even bought a new shower curtain and took apart some of the durable home care gear...she hit the wall and could go on no longer when her hubby began to have the falling incidents, the p&p issues, eating and drinking and dehydration issues..up until last week it was all on her.
Some days life doesn't seem like a fire drill, but more like the event where you hear the alarm and there is a voice over a loud speaker saying, "This is not a drill. This is not a drill." Some days I can actually see flames, I think. But I'm always on guard, glancing to see if smoke is coming in under the door.
Joan is right. You have to get away a little bit for yourself. Even when no emergency is happening right now, I never can relax when I am at home. For one thing, all the work I need to be doing around the house is staring me in the face. For another thing, every minute that I am here, I am on duty. It's hard to relax and regroup when you're still on the job.
Conversation? What is that? By the time you explain over and over again what you are trying to tell him you have lost the conversation. I have always done almost everything at home as my DH was usually on call 24/7. I had more energy then but now am finding I get tired faster and can't get anything done. I have been working on painting our bedroom and 1/2 bath. I started a week and a half ago and still have the ceiling and one wall to do (same color on ceiling) as well as doors and window trim! Last year I did another bedroom and it was completely done in 3 days! Trying to get anything done with a "2" year old in the house is frustrating. Thought I could get him to take the switch plates off until I found him sticking the screwdriver in the outlets!
The fact that he is up most of the night probably doesn't help my tiredness. And this incessant rain doesn't help either.
As phil4:13 said "Conversation? What is That?". It's been 2-3 years since I could have any meaningful conversation with my wife. Now she agrees with anything I say or ask, and then goes ahead and does what she wants. If I ask her to sit down, she says "yes" and walks out of the room. She does nothing to help, and doesn't even offer. BUT, if I am trying to get a meal, do the laundry, etc., she is likely to start wandering so I have to stop what I am doing and chase after her. Thank goodness for the adult day center she attends 3 days a week. I'm getting to dread the days when I have to take care of her all day - Tues, Thurs, and Sat. Time to go pick her up at day care!!!
Phil4:13 - I know exactly what you mean about everything taking so long to get done. I find that because there's always another fire drill just around the corner, I almost never get to finish one thing without having to rush to somewhere else and put out that fire. Gone are the days when I was supremely organized and life breezed on by on my schedule. I find it very difficult to even get organized these days.
We had a visit from a financial adviser the other day and I'm hoping that he can at least get the finances in order. My dh always did that. I'm not a ditzy airhead type, but I was always happy as a clam to let him do all that and never worried. He did a fine job. BUT, when I took things over a year ago - OMG - what a mess. He had stuff all over the world and didn't remember much about most of it - it took me months to track all things down and I'm still not sure about some of it. Anyway, it is all too complicated for me and I just keep withdrawing money from our investments each month to pay for all the bills and fire drills and am scarred to death that I'll spend it all before I die (and we haven't even gotten into the times when I'll be hiring outside help for him $$$). I need some structure and I'm hoping this man can help me with that and that will be one less item on my plate.
BTW, you talked about incessant rain - do you live in the Pacific Northwest? That's where we live and it's been gray, gloomy, windy and rainy and colder than I can remember since last October. Today is absolutely glorious, but those days have been coming only one day at a time and weeks (sometimes months) apart. However, when they do arrive, I praise the Lord for his wonderful creation.
Today DH wanted to go to the deli (3 blocks from home) to get fried chicken for lunch. I said that sounded like a great idea and asked him if he had brushed his teeth. Not a good question evidently cause he got all pis*y with me saying that he can't just do one thing without me having a list of stuff to do first. After me trying to explain that I just asked him a simple question (simple?) he sat in his chair and immediately went to sleep for 2 hours. He then apologized to me and told me that he didn't know why he was so upset. I told him that HE wasn't to blame, it was the disease. He said he would try to do better. That is his standard remark. He doesn't realize he won't do better. He seems to get angry more often and I guess I need to talk to the doctor about THAT too.
mothert, I live in the Northwest but it is NW Pennsylvania! We have been inundated with rain all Spring and have not had more than 1 day a week without rain. Sun? not today and it is only 45 degrees out!
Sheila - my dh seems to be getting more angry/moody lately, too. I leave him alone and refuse to argue with him and he comes around eventually. Like your dh, he doesn't know why he was mad. I think he has started into a new phase of this disease and I just have to hold onto my knickers and ride it out. I have noticed his anger and declining memory more pronouncedly (is that a word?) since he began taking Namenda. As I can't find a good reason to keep him on this drug, as of today, he is off. I did notice that when I cut his Aricept in half, I got all kinds of attitude; perhaps that was just the beginning of this new phase. I don't know. Truthfully, I don't know much about much these days. I just have to rely on the higher power to get me through because I'm just living one day at a time; and, as much as I hate not being able to chart my/our course, I cannot and that's just the way it is. Boy, I've sure been going off today, sorry friends!