I invite you to log onto the home page - www.thealzheimerspouse.com - and read today's blog. I was wondering if any of you felt the same as I do. Maybe it is just not being able to shake off this illness that has me so tired and short of patience.
I feel exactly the way you do, Joan. I am worn out and wonder how I will survive when the going gets tougher. I find it so stressful just to have to do the thinking for both of us. My husband was such a big help to me around the house throughout our marriage and now I am responsible for everything except the mowing and not sure how much longer he will do that. But I will hire that done, for sure. I've never mowed and not going to start now. Thanks for that blog - very timely.
"YOU AIN'T SEEN NUTTIN YET" I am constantly reminded of this when I am reading the aches and pains of other caregaivers that are still in the early stages. My DW is late #6 and early #7 and I assure you, it is much harder. I think the thing that get's harder to accept is their lack of any understanding of their problem. They do seem to realize that something is wrong with them sometimes but, and very sadly, they do not know and we can not comfort them the way we would like. They do not even know what a list is, much less being able to read it. They put one pair of pants on top of another. She tries to put her panties on using a leg opening. They do get bored and this can bring on anger and/or sadness. All these emotions they have, come right back on our shoulders. I have a Helper that comes in 3 days/wk for several hours and does some lite housework and tries her best to entertain Carol while I take a nap, run some errands or just ignore her for a few hours. It is still the little things but put together they become terrib le. Hang in there Joan. bill
I know just how you feel , Joan. Sometimes I scare myself, I was so upset this morning that I was pounding my hand on the counter. I amazed that Sid can still use his glucose monitor. I know I could never do some of things other caregivers are doing
I know exactly what you mean. My sister and her husband came from PA to visit yesterday. He got confused and could not remember who was coming. When we went to the airport to pick them up, he could not remember what they looked like. He kept saying, is that them, over and over. When we saw them he did remember them. We had seen them last December and he has known them for almost 50 years. Now, he keeps telling them the same things over and over. It is so tiring.
It's not just the little things. It's also the medium-sized things and the very large things. I'm responsible for e-v-e-r-y-t-h-i-n-g: making sure there is milk to have with the cookies, paying the bills, driving everywhere, fixing DH's every ache and pain, reminding and reminding and reminding and reminding…. For every single thing in DH's life, he looks to me to make it work out how he wants it to be. Doctors also look to me to "manage" DH's many medical conditions and drive to all the appointments and tests (and make sure all their bills get paid). I spent over two hours just today, driving to a specialist and back. This was just one of three major medical trips this week.
I'm finally starting to get the message that one person can't do this by themselves. I'm also starting to understand why even the Alzheimer's Association talks about the number of caregivers who die before the person they are caring for. Being responsible for everything will literally kill you.
By the way, even little things, if there are too many, can bring you to your knees. In a common phrase, they talk about "the straw that broke the camel's back", not the boulder that did it. But pile too many of those pesky little pieces of straw together, and they weigh as much as a boulder would.
Jan-I do believe that being responsible for everything in two lives is a killer. No respite at all. That is why it is called the 36 hour day. Sadly when our spouses decline at the end it does get easier.
It helps so much to know there are others who feel just the way I do. The "straw that broke the camel's back" occurred yesterday (today was even worse!). I cannot do it alone and I realize that now.
Joan, you could not have described how I feel any better. It seems that Sid and my dh are the same stage. It does get overwhelming often and this is not because I am sick. Nor is that the reason it is so hard for you. We are just TIRED OF THIS BLASTED DISEASE. It is wearing us down seeing that we are loosing the person we love. Sometimes I can handle the bigger issues easier than the small ones. I feel so crazy when this happens. It leaves me wondering what I will do when the later stages get here. It scares me as much as loosing my husband does. I know all of us want to take care of our LO but some days I don't know just how this will happen. That is why it is so important for all of us to have a higher power to rely on as well as earthly beings to help. But on my end those beings are few and far between. But once again, we will all make it as long as we have the blessing of this site to SCREAM, CRY, WRITE, AND LAUGH........ Hope all gets better....... have a great evening,
I feel the same way about the little things. My husband is still at the stage where he can take care of his daily needs but he cannot do really anything else. For instance, today when we went to the garage for our daily drive to the mall that he insists on, the car had a flat tire. Now, I have never changed a tire in my whole life, but when I asked him to help me he said he couldn't do it, didn't know how. So I got out the jack, took the flat off, put the temporary tire on and took the flat to the garage where they fixed it. Came back home and did it all again. Thank goodness I have paid attention when he used to do this. This whole time all he is worrying about is when we can go to the mall and how did his hands get dirty (I had him help me put the tire in the trunk). Took him in the house to wash his hands--had to tell him to use soap--and then we went to the mall. He was happy but I was a bit cranky from having to take over another duty.
This is the second thing I have had to take over recently that I have NEVER done before. A week ago I had to mow and get the leaves up for the first time ever while he stood on the porch and just watched me because he didn't want to do it.
He cannot handle his own medication and will tell me he is not hungry but just wants candy, pie, etc. I hate treating him like a child but I do insist he eat his meal or he will not get his nightly little bag of m&ms. If I leave him a note, he throws them away without doing anything on them. Then he will ask me every morning if I'm taking a shower but when I ask him to take his, he will tell me "tomorrow".
I have the same experiences that Joan reports. I also wonder if this is how I am now - as he is so high functioning - what on earth will I be later when he can't do so much for himself. Like Joan, I have to be right in front of him, have the task - simple - in front of him, be there when he starts or else he could walk around it for days. That is not his usual nature, he has always done as much around the house as I have.
I feel shouldn't "complain" as I really do have much to be thankful for and so many of you have lives that are so much more difficult. His memory is leaving him more and more. For four years, we did go through the rage, anger, etc.......new to me and so much hurt my feelings, broke my heart. But last December 13th his doctor put him on depakote and he has been his old self. I thought I would never see that part again. Thank goodness for meds that work.
i was afraid it was going to make him a zombie, but I didn't care. He had become physical and we both needed to be safe. If he sat on the couch and slept all day, I was ready for that. But, the med didn't have that effect on him and I am so grateful.
Deb, everytime I see your sig, I think "she's only a year or so older than my older son" - how can she deal with THIS - he's dealing with a TEN YEAR OLD! (who's fine, but light years away from where you are!) At least it won't last forever, for you. For me, in my 70s, with my husband 85, it probably will!
I'm ashamed to complain about the little stuff when so many caregivers have to deal w/so much more than I do. I've also developed a strong empathy for single parents. Today we visited hb's gp so she could go over results of blood draw w/him (actually, me, of course). His kidney function is too low; so we're to see a specialist about that in Dec. Having vision problems, but can't see his eye dr until Jan. I noticed he hadn't shaved. After dr visit, we took gift bags my DAR group had prepared for veterans in care centers; then to memorial service for vets. When we were to say the Pledge, he just stood glassy-eyed. I put his hand over his heart. Had a spot of breakfast on his sweater. I HAVE to be more observant of what he's wearing and his grooming before we leave the house. I do appreciate things I'm learning from those of you who are ahead of me in this "game," and believe me, I'm not trying to catch up.
I have decided my new life motto is "It is What It is". The last time my husband's best friend called me he said that he didn't know how I did it all and he didn't think he would be able to do it for his wife if she needed it. I told him you don't really think about it--you just do it because it needs to be done and I know my husband would have done it for me.
My husband has no insight into his disease, but I KNOW that this is his worst nightmare coming true. He was always afraid he would have any type of illness that would steal his mind and make him dependant. It just breaks my heart.
I hope for a life after because I know it is possible. My younger sister lost her husband to brain cancer 5 years ago, and she had two younger children. She took care of her husband for a little over two years while his personality completely changed to rages and self pity. At least my kids are adults.
joan it is the little things that wear you out, but you'll find it's also the little things that will pick you up, make your day, bring a smile. Notes for my DH were never very much: GO D & W Back 2 told him I'd gone to the store and I'd be back by 2. Learning disabled he could never read. He can barely follow one step directions now, sometimes, but Tues. he adjusted the mower, mowed the areas where we had the corn and gourds, then readjusted it and mulched the areas, all on his own. Then came in complaining that he was all tired out. (He hasn't mowed anything in more than 2 years.) He'll ask the same thing over and over, but always reminds me to set up the GoBus for our store trip---and to remember the checkbook, ever since I forgot it once.<lol> As a part of taking care of me, I refuse to dwell on all the daily little things he can't do or does wrong. I see them but I don't allow them to run me--into the ground. Big stuff is easier for me to deal with. Face it; deal with it; get it done with. The little stuff nags at you, and that's what you have to filter out. Deal and move on; answer and move on. Don't sweat the negative small stuff. Treat it like the sweepings you pick up in the dust pan and dump in the trash. Focus on the good things--small and large happening with your DH everyday. He still eats on his own; he dresses himself; he's good about using his cane. Don't focus on having to lay out his clothes; make his meals; or reminding him where the cane is. Your survival of each stage and the pressures it puts on you depends on you. Each and every time there is a change in your LO's condition you have to look at it, face it down, and set your plan for dealing with it. You decide to let it run you and wear you down, or do what you must to deal with the change and keep moving forward with your goal for your LO. My goal is to get my DH through his Vascular Demetia progression as well as possible, with as good a life as I can manage for him as long as I can at home, but in placement if needed, and to survive the process myself. I'm planning for now and for an AFTER for myself. There's lots I still have on my list of things to do.
The thought I dread is that this will linger on for years. I can't imagine going on this journey for 10, 20, not even 5 years. I know 'it is what it is', but that does not change my feelings on having to go through years of this. The repeating is driving me crazy. We have been back at my sister's just since Sunday night and I can see her getting tired of him repeating what he just said. I guess I should be grateful I only deal with short term memory loss right now.
Carosi, I like your approach and agree entirely. Don't sweat the small stuff, and tackle the big stuff head on. Having said that I'm very tense this morning with a visit to a possible day care facility coming up in one hour. How do I get him to accept this? Whether it works or not will make a huge difference to my life for the next year or so. So how can I help sweating it?
Joan - you described my DH perfectly. I know exactly how you feel. The little things can wear you out. I'm also surprised Sid can still do the glucose meter. Rocky stopped it a long time ago, and I don't push for it. I just give him his glucophage and hope it will balance out.
Deb - I, too, have learned to do e-v-e-r-y-t-h-i-n-g. Changing a flat tire ... now I'm impressed. I don't think I could have done that, but considering everything else I've learned to do ... I guess I could.
The other day I was outside washing the car, inside and out, only to come in and find my DH sitting on the couch eating ice cream. Now what's wrong with this picture. And I know it would be the same if I had been doing something bigger like standing on a ladder painting the house. He seems to live in the moment and has no conception of what's going on around him.
I fear what the future has in store as this thing progresses. Thank God for this site and all the support we receive here. We're a special group of special people.