Not much of a discussion topic; but before I put on my winter coat, scarf, hat, and gloves to check the cows, horses, chickens and all, and then come in to stoke the wood in the fireplace, I just wanted someone to know that I am tired. And my AD spouse is sound asleep.
Just today, what is it about this date..30 Nov...I mentioned to someone how mentally tired I am. There is always so much to remember about our LO and what they do and what they need, then the appointments and the errands that their condition requires, the lack of help they used to provide that was so valuable for such simple things as getting the car in for a tune up, or taking care to make sure the furnace was checked etc..or that odd run to the grocery store for milk or some other item.. All that piled on in addition to the administrative work of banking and bill paying and mail answering..it is no wonder that we wake up with the " it's the same song different day" and there is nothing much uplifting about any of it..A window shopping trip now is a luxury.
Wow! It must be getting to all of us. Last night I sent an e-mail to my sister, and this is exactly what I wrote:
"Arlene, I'm tired. I am sooooo tired. I don't want to do this anymore. I know I have no choice, and I certainly would never abandon him, but some days it is very hard to keep going."
MsAbby, we understand. More than anyone else, we understand.
Wow, I am tired and lonely. It is hard thinking for two. Recently I replaced our heating and ac system and hot water heater. DH kept asking what was going on. It seemed to take forever. Our kids come visit for half an hour. Oldest son just lost his job and needs financial assistance. Why do I need to help because they have lived over their means. He wants a loan to pay back over 10 years. I told him we may not be here in 10 years. DH was looking for his sweater. Apparently, he had been sitting on it. He got up to look for it, said to me you were sitting on it. Shadowing is getting worse. In the kitchen he just stands and I have to work around him. I think the line between him and me is blurred in his mind. He had a checkup with the internist Monday. Dr said he is in perfect health. His heart, blood pressure, vitamin D level, cholesterol were all perfect.
I'm not feeling any more tired than usual, but I since yesterday I've had a tic in the lower lid of my left eye. For me that's a sure sign that I'm really tired or under a lot of stress. What a surprise!
Not only thinking for two is hard and tiring but when we are pretty much alone with them all day we don't have anyone to have an intelligent conversation with either.. Was trying to tell my DH about an article ( to do with this TSA nightmare everywhere) and this once strong and warrior Hubby is now just has a roll over and play dead attitude about everything. Then people wonder what makes us talk to ourselves? I have taken to wearing a radio head set when I am doing house work and DH is watching TV.
Don't worry, I talk to the pets all the time. They are very nice about it and try to listen. I am also very tired, but must keep going. Some times I am tried of having a job, but I need it and it does give me a break.
As I mentioned above, I have been especially exhausted lately. Before MsAbby started this discussion, I wrote a blog about it with the intention of posting it one day this week. Since it seemed appropriate, given this discussion, I posted it today. I invite you to log onto the home page - www.thealzheimerspouse.com - and read it. Post comments under this discussion.
I am tired too, but it's not from caring for DH all the time. He does a lot on his own. Really, I think some of the "tired" is, rather, boredom. Since I can't do some of the things I really would love to do, go places I would really love to go, participate in certain activities, go to the store alone.....I feel bored lot. I don't mind taking him to the doctor every 3 months (have cut out all others); or to get a haircut, but it's the things I would love to do ALONE!
I agree with all of the above. I'm tired of having to do everything. Tonight, since we have to eat in our apartment, I have been trying to find something to do with left-over Thanksgiving turkey. Previously, my wife would have known exactly what to do, and do it. I miss the conversation, but also miss going out to dinner, concerts, theater, etc. as a couple. Maine is NOT a cultural wasteland as many people seem to think. There are lots of good shows nearby.
I don't have the cows, horses, chickens and all to tend to.....just a stage 7d husband who is bedridden and a 15 year old German Shepherd who has been diagnosed with dementia!!!!! And I am tired too! <grin>
Imagine getting up in the morning and giving the dog her meds, giving the husband his meds and juice, getting cleaned up and dressed and instructing the caregiver when she arrives, going to work, shopping on your lunch hour, going home from work, finding out how things went; feeding the dog, preparing dinner for two, getting comfortable, and having the dog whine at you because she wants you to go to bed! AND, every half an hour doing it again! AND after giving husband his bedtime meds and tucking him in and going to bed, the dog whines for you to go back to the den!! AND two hours later, whines and nudges your hand (if it is close enough to the edge of the bed - and if not she gets louder!) wanting to go out. AND two hours later repeats the whining. By the THIRD time, it is hard to go back to sleep!
This has been going on for almost two weeks now - since she had another "episode" (throwing up, larthargic, couldn't walk well, etc. - lasted a couple of hours) I can't/won't put her down....but it was bad enough with my husband having AD, and now adding a dog with dementia --- I have to laugh.....of course, I'm sleep deprived again, but at least she's asking (read demanding) to go out and doesn't create messes for me to clean up!!!
I am holding on until my daughter gets here in two weeks for Christmas vacation - then I'll have someone to share the nightly "chores" with for two weeks!!! <grin>
Yes, I am tired as well.....but at least I have my health....some of you don't....and you are in my thoughts and prayers.
Marsh, I agree with you - and Arkansas isn't a cultural wasteland either...I miss the social life we had, and going to the symphony, the theater, dinner, etc.
Having placed LO the first of June I now have the time do any of the things I used to love,alas I either can't get up the energy or just feel bad knowing I can go an LO is stuck at ALF,mostly the latter I think,so I just sit here an look at this stupid screen most of the day an watch the snowflakes,when is the next cruise?
PLEASE forgive me for laughing, but the dog with dementia really got to my funny bone. Like I said recently - I'm the middle of a dementia sandwich with Sid on one side and my father on the other. With you, it's the dog on one side and Dave on the other. Ya gotta laugh.
So here's whats left out of this discussion--just how exhausted does a caregiver have to become before they decide to place their LO? Joan--you said you have no choice, but in reality, you do have one...the financial aspect of this may be a problem, but Medicaid does cover some ALF level care and certainly covers nursing home level care. There is also Medicaid Waiver in some states that will pay for help to be brought into the home. I'm sure I'm not telling you anything you don't know, am I missing something? Even if Sid's cognitive issues combined with his physical problems at this point don't require nursing home level care, if I were in your position I would do all the preparatory work so that as soon as he qualifies you can get some help or move him to a facility. At least then you might feel some relief psychologically; yes, it is hard to deal with the issue of placement emotionally, but sometimes it's the best option.
I think we are all tired. There is physical tiredness and stress tiredness. I spent several years caring for my Mother and my husband through my Mother's aging problems and my husbands Parkenism and Dementia. I was tired from all the responsibility of caring for them and doing all the million and one things you are doing, with the exception being I wasn't working at a job outside the home. I have no idea how you who are doing caregiving and working outside the home do it.
I think having a spouse in a facility might be more stressful for me than doing the caring at home. I had periods of hospitalization with both of them and I think running to and fro from the Hospital made me more tired than staying home with them. Everyone handles stress differently.
Now I am a widow - almost a year now - and I am enjoying my freedom to come and go as I please and do what I want when I want. But many things are best enjoyed with a friend or partner, such as a movie, dinner, show, etc. I am still making decisions and doing the chores I did a year ago but now my life lacks structure. I think we all need structure. When we work outside the home we know we have to go to work on such and such a day etc. and plan around that. Same with caring for our spouse. Now I have no one to care for except for myself. I have scheduled a day a week at a volunteer job with wonderful people. Last week, Thanksgiving, my volunteer day, of course I didn't go. That one day a week has become very important in keeping me grounded. I am glad tomorrow is "work day" for me.
I have found that being entirely alone now - without a spouse - even one with dementia and not talking - is more alone than being with a spouse not talking. I know he could not protect me from intruders, could not help me with any jobs, could not worry with me about the children or grandchildren but somehow - just a presence is welcome. Somehow the stress has not lessened....... it is different stress....
I'm tired, too. Tired all the way down to my bones. The last time I saw my doctor, she wanted to put me in the hospital. Since I couldn't possibly get away, she sat me down and gave me "the talk". You know, the one where your doctor or a close family member tells you: Enough, already. You're killing yourself doing this. You need to start taking care of your own health issues. Now. Right now.
Years ago I heard something on a tv show that really stuck with me. It was, "Somebody needs to flag him down before he runs off the road". This didn't mean that he was in a car driving somewhere, but that his actions were just about to get him in serious trouble. I think a lot of us are to that point. Somebody really does need to flag us down before we wind up running off the road—physically, emotionally, mentally, every way. We just keep giving and giving, at the expense of our own health and well-being.
Why is that we say we could never "abandon" our spouse, but instead we do abandon ourselves? And why is it called abandoning them just because we don't spend every waking moment on their care? I think we need to find another word for this, because otherwise we are telling every person here that they are abandoning their spouse when they can no longer care for them at home.
There is a very good reason that many caregivers die before the person they are caring for. We all tend to act like we're immortal, that we can give and give—month after month, year after year--without destroying ourselves in the process. Maybe that would have been true in our twenties or thirties, but most of us are long past that time in our lives. We're all doing a wonderful job in encouraging each other in our jobs as caregivers of our spouses. Maybe we're not doing quite a good enough job in encouraging each other to really take care of ourselves. What virtue is there in literally killing ourselves trying to fight a battle that we can't possibly win?
I know that if my DH were able, if he could see our situation, he would also want to sit me down and have "the talk". Since he loved me, he would not want me to kill myself taking care of him. He told me that many times. So why am I? What is it that makes us keep going until we absolutely drop?
Just checking in here and this topic is mighty close to my own thoughts over the past few days. I'm tired too. My dog doesn't have dementia but is demanding as well. Has to stay on a leash..No fenced yard. DH seems to be doing ok at the ALF although its been a 'work in progress' with ever changing staff etc. Right now (knock on wood) I'm beginning to have some confidence that he will not languish if I don't show up there every day or if I have to miss a day or two. I'm sandwiched between DH and my mom who is in a retirement place over an hour away. We place DH in July and Mom decided to move in Sept. My whole world has revolved around DH and his needs and/or my mother and hers..Thankfully she is safe now though and can get around in her new surroundings just fine.. Its just a long distance to drive to go see her or take her to her doctor appointments etcc. Today I had a burst of optimism that I could actually be able to take care of Mom's needs 3 days next week and that DH would possibly be OK or at least no worse..when I get back. Its a different tired..a different stress..but you are all right.. Its stressss nontheless.. Thanks to all of you.. Thanks to Joan..
I think we ALL are experiencing tremendous daily fatigue due to the daily stress ... trying to be understanding and show patience when we've responded to the same question 20 times, looked for the same missing article of clothing over and over, etc. In my support group, we are all dealing with some commonalities and some very significant differences with respect to where our AD spouses are. But the ONE thing we are ALL dealing with is that overwhelming sense of fatigue. It just gets you down.
I talk to the dogs too. They take better direction than my husband at this point. They definitely got the anger message when Mr. Yorkie greeted me with a turkey leg in his mouth!!
I kind of missed those leftovers! I should go over to Marsh's!
I do not want to deal with the guilt of not caring for her, as long as I am able. I would not call that uncondional love but self preservation. I am doing what I think is best for her and me, as she moves into the later stages my thoughts may change. I am not tired, just not happy about the situation I find myself in at this stage of my life.
Last evening we were watching the grandkids - last chance to see them before we leave - and received a phone call that their mom had passed out at work and was taken to the ER. I had to leave Art with the kids - girl was fine with her TV programs but grandson was being an active 2 year old boy. I felt sorry for hb but had to go check on their mom. I spent more time there than I planned so he ended up having 4 hours with them. She is fine, some vascular thing that when her reflux causes her nausea it triggered a headache and drop in blood pressure. She is on meds for that. Today was taking her to the doctor to get that diagnosis and pick up her car at work.
We didn't leave today although we had time to - I was just too tired. I was awake until 1:30am (couldn't go to sleep) and she called at 7:30. Trying to explain why I wouldn't go was hard. Hb does good at driving he just needs me to tell him when to turn and where to go. He needs me to remind him what needs to be done, stop get gas, stop for propane, etc. As you all know you can not give them a list and expect them to remember. (his driving is fine because when other drivers do things he reacts appropriately and the doctor says as long as he does not drive often by himself she has no problem since he does react correctly)
Tired - yes. The grandkids daycare provider when I saw her earlier in the day yesterday to confirm direction said I had a good memory. I said I have to since I have to remember for 3 (me, hb, sister). So, yes tired today. Tired when we travel cause my habit was to sleep but now I have to stay awake. Tired of remembering everything we use to share.
In the middle of the night last night (after getting up to help dh with a bathroom trip) I decided it was definitely time to start placing him. (that is, put him on the waiting list) I was so tired and had it all figured out. The reasoning seemd very clear to me. This morning the world was bright with snow and sunshine, I had trouble getting him up but he went to day care, came home cheerful and life looked brighter. Monday I have an appointment with my case manager and I'm going to discuss it with her. That gives me a few days to think about it.
My husband is in placement and I am still so tired. Like others have said there is physical tiredness and emotional tiredness. Mine is of the emotional variety but it is tired none the less. I work full time, spend time with Charlie, eat, sleep and start the cycle all over again. I don't think tired even begins to describe what I feel.
In reality we all probably stay tired. Its the relentless minute by minute day. My doctor checked my blood pressure during a visit last year and asked did I have any stress in my life. My answer....I have a little life in my stress. DH has been so much worse for the last month or so. I'm having aches and pains where I never had pain before...especially my back. The emotional pain is much worse than any of the other pains.
Well, this discussion is exactly how I've been feeling....for a long time. I had tears in my eyes as I read the various comments because they hit so very close to home. I wish that somehow I could get a total night's sleep, sleep in and relax - just for a day. What a fantasy! I am bone tired, over stressed, you all named how I feel. Thank you all for speaking up here.
For those who haven't, please consider looking into your county's office for the aging or some such organization. Get a list of resources available for seniors - maybe there's something new or something that you haven't tried in a long time. Our caregiver support group had as a guest speaker, the director of an organization that advocates for the mentally ill. While we all wondered why he was there, we found that we needed to educate him about AD - that while most AD patients don't suffer from major physical problems, many suffer emotional difficulties like anxiety and depression. It turns out that he welcomes our situations as part of his organization's scope of interest. So, you never know.
My husband has had AD for 5-6 years. I worked until July of this year on midnites. He slept at night (I assumed) and then I slept during the day (when he let me). By July, I could not take anymore and took a family medical leave for 12 weeks. When that ran out, I took a personal leave until January. In August, I took him to Florida to stay with my ex son-in-law. While we were there, my other son-in-law ripped the whole top off my house and added a third floor so he and my daughter and their 2 teenaged sons could move back home to help. That project is nearing completion and the move should take place in about a week. I am so tired. He cannot carry on a conversation anymore. If I go anywhere, he must come with me. He will be following along and start following someone else. He can be 5 feet away and be totally lost. He has started falling down. He cannot eat with utensils anymore, dress himself, bathe himself, shave himself, dial a phone, or wipe his own nose. Many are the days that I say I did not sign up for this. His family lives 15 minutes away and won't help whatsoever. One brother used to come and pick him up until he refused to take him unless he wore an adult diaper. I told his brother that was not a problem yet and refused to humiliate him. I guess the family is in denial. As long as they don't see him, they can pretend he's ok. Wake up, people, it's genetic. Thanks for letting me vent, folks. I fell a little better already.
I think the worse thing is not having another adult to talk to, we are on our own. I find myself sheilding my husband from things like ,the hot water heater is leaking, faucet is dripping, he cant remember what to do, anyway. It just gets chaotic when he know about these things. Im pretty much on my own, my daughter is my only source of respite, and it is limited. She has her hand s full also, with my little grandson with Down Syndrome and IDDM.
Yes, the isolation is very very hard. That is why this site is so excellent. You can check in, watch other peoples lives and problems, and then comment. Or vent. Or do nothing. But you are not really alone anymore. There are lots of others.