I invite you to read today's blog - it is an updated version of an older one. Do you agree with me, and if not, which caregiving chore is the most exhausting for you?
DH gave up driving on his own 4 years ago- no problem. I'm a car junkie - love my car, love to take care of it - always did - and always did most of the driving anyway. Finances: not a problem, I always took care of that too. It's just a whole bunch of "little things" that exhaust me the most. To name a few: scheduling all the doctors' appointments; making sure he takes his medicines; taking the garbage out, after he's stuffed it so full I can't get it out of the can; checking all the doors at night to see that they are locked; checking the furnace to make sure it's on the right setting and he hasn't changed it; getting him to the barber shop for haircuts; and mostly, the thousand questions he asks throughout the day - all of which I have already answered at least 999 times.
I know lots of you have a lot more problems than I do and I feel for you,including you, Joan. Find those tours that you can go on NOW while Sid still can. I can't even do that anymore. Thank God we did lots of traveling before AD.
The caregiving chore that exhausts me the most is watching my husband die inch by inch in front of me. I would give anything to go back to driving him places.
" I would give anything to go back to driving him places."
bluedaze, for us those were the good old days, when DH could still be out and about, continent, pretty functional, and the worst thing I had to deal with was the inability to remember anything for more than 10 seconds.
I have to agree with Joan that RIGHT NOW the driving is "driving" me crazy - especially since he's also going through what someone called the "have to do it right now" stage. If he thinks of something he wants at Menard's (it's always Menard's!) we have to go right away before he forgets. I know that there will be a day when this will seem trivial. RIGHT NOW it doesn't.
What caregiving chore bothers you the most RIGHT NOW - where you are in the journey?
Washing and dressing my DH is exhausting, but I am honored to do this for the love of my life. I know he would do the same for me. I agree with Bluedaze, the absolute most exhausting thing about this hideous disease is watching the one you love, with all your heart and soul, slowly disappearing, dying, helplessly right in front of you, and there isn't anything you wouldn't give or do to change it. You'd take the disease on yourself in a heartbeat to save him. There is a sickening feeling when you wake each day and realize it wasn't/isn't a nightmare, it's all to real. Arriving at the nursing home last week and seeing him sitting with all the older residents, just staring, that's all just blank, and feeling like someone has punched you in the stomach. I despise this horrendeous, mean, cruel disease. I want my husband back. That feeling will never leave. I miss him so much, it makes me physically sick. Wow, venting is also exhausting.
The thing that is the most exhausting to me is trying to seem to have it all together so my dh will not have too many issues other than his own health. I try to handle things the best I can but sometimes it is not easy. Of course since he seems to sense all of my mood changes, I have to go the extra mile to cover them up. Sometimes they can be very ugly.......Sometimes him and everyone else see them and then i just let them go..... can't help it. Also having to check everything that my dh does to see if it is correct or not. It is so much easier for me to just do the chores myself but he wants to help so much. Even tho he has limits he tries. I have to go behind him constantly and check what he has done. He has no clue what I have to redo. I do know that someday I will miss all of this, but sometimes it is exhausting.
bluedaze and folly, I was going to complain about several things but your posts changed my mind. I'm very fortunate to still have a pretty normal relationship with my DH. I've managed to have more patience when he asks the same questions over and over and can't remember what he did 5 minutes ago. Thanks for making me realize how much I still have.
I think the one thing that will do me in is the bureaucratic paperwork that goes on and on and on... And then there are changes to make; new services to be applied for; and updating the case files. And then there are the corrections to be made because... . . And everything has to be backed up with documents. Who can't figure out that even if the Food Assistance Application is attached to his Medicaid Waiver case, it was completed by his Guardian/wife, as Head of Household, and the Card should be issued with her as Authorized User? Noooo. It's issued to DH because the Case is in his name. And now that needs fixing. Which I have to contqact the worker to get it fixed.
Dealing with his agitation, forgetting, confusion, etc. and so forth I can do--there's a reason for it. Yes I'll get tired, but I also recover. There is no excuse and no decent reason for this other garbaage. These people are supposed to be okay.
I guess the most difficult thing for me is the change in lifestyle. I am used to getting up at 6:00 am and going to work. I really do not like sitting around the house and the loss of my pay check. We are now living on a lot less and I was used to buying anything I wanted. I want to spend the time with her while she is still here, when she declines more, I will probalbly go back to work if I can find a job in my field.
Carosi, I have to agree with you that the paper work is a royal pain in the behind. I dread it, procrastinate and eventually get someone to help me do it, simply because I hate it. I'm perfectly capeable (most of the time) but it is so redundent.
Moorsb, I too left my wonderful fulltime job to care for and spend as much time as possible with DH. I never expected him to need to be placed so soon. I left 1 yr ago, boy did a lot change in a year and it went by so very fast.
Watching my husband's abilities to go a piece at a time while seeing him there in his eyes is heartbreaking and exhausting. Continuing to find the strength necessary to advocate for him takes a great deal out of me as being pushy and aggressive is not my normal mode - asking lots of questions is though. Trying to work full time, see him almost daily and do the full care of home plus still have a bit of a life to myself is exhausting.
Okay, I admit - I'm tired - is there really time to sleep?
The thing that exhausts me the most is the constant questions and having to explain every little thing happening. The next most exhausting thing is the driving. For once I would like to be the passenger - the one being driven (chauffered) to where ever I want to go. That will likely never happen , and I remember the pride I used to have being independent and need others to drive me around , but now I'd need to hire someone to do that. Oh, to be the passenger once again.
gypsy, I'm with you all the way. I just got back from visiting son and DIL and they have a new van into which dh and I also fit, along with their whole family! It was really wonderful being driven everyplace we went. this trip we did not rent a car in the US for the first time ever, but arranged for someone to drive us to and from airports on all four of our flights. It worked really well and was worth the expense.
I hate driving and will get on my bicycle in bad weather to avoid it if possible.
I have to join the crown and agree with Bluedaze that the hardest thing is watching the woman I have loved for 36 years decline before my eyes.
That said, I don't mind any of the chores as long as she can help me. She has gotten to the point where she won't sit on the toilet or when sitting, won't stand back up. The worst is when she has already messed and I just need to get her to sit on the toilet while I remove her shoes, socks pants and depends. She freezes up and with the urgency of the situation I then get excited. I don't want to move her and all this mess to another room but I can't help her as long as she is standing up. This is about the only time I lose it emotionally and feel that I can't do this anymore.
Other times, while trying to get her dressed or undressed, she will hold her foot rigidly on the floor and screan if I try to lift it up. I guess that the frustration for me is that what I want to do is so simple but so foreign to her. For a couple of years when people would complement me for taking care of her, I would reply that she really makes it easy for me. She's not making it easy anymore.
Baltobob, I, also, have the problem of watching the love of my life deteriorate. We have been married for almost 56 years, dated for 8 years before that. Our first date was when I was 14, and I never dated another woman (girl) seriously after that.
I sometimes have the same problem with clean-up. Some days she will back up to the toilet, lift her skirt (I don't use pants for her due to getting them off for clean-up), pull down her Depend and do her business. Other times she will just stand there and object when I try to get her to sit down. I agree, the hardest is when she has messed her Depend and won't sit down for me to clean it up. This biggest problem on getting her undressed for bed is getting the clothes off before she gets in. She is always trying to get in the bed fully dressed. But, most of the time she still makes things relatively easy for me.
Baltobob and Marsh, I echo your posts. Watching my husband deteriorate is killing me. We have been married 48 years and I've always been married to him. I was 18 at the time.
And the last TIA or small stroke he had a couple of weeks ago left his right side weaker, and getting him to lift that leg is difficult. Dressing and undressing him when he no longer understands the verbal directions, so it is getting more difficult. I'm having Hospice come every day to bathe him for me now. I was tired by the time I got to work each day.
Baltobob and Marsh ………… I notice you both mention the problem as regards sitting down on the toilet. I too had the same problem crop up, just all of a sudden …… my husband started refusing to sit down. It almost seemed like he was afraid of falling or something it was very hard to determine the cause of this new behavior when, just a few days before, everything was okay and he willingly would sit on the toilet.
I solved this problem by purchasing a 3” toilet riser which may also help you when dealing with this toileting issue …….. you can see it at ……….
I’m not in any way associated with this company but definitely endorse their product as it has worked so well for me. I posted this information under a different discussion entitled “When the system fails you”.
I’m also encountering *the foot frozen to the floor* baltobob and agree it's a most frustrating state of affairs and most difficult to deal with. I can’t figure out why or what is causing this behaviour but think its most likely part of the *disconnect* between the part of the brain that tells us how to move our limbs and his foot/leg. With my husband it seems to be more one leg/foot than the other.
You know Mary I think you've maybe hit the nail on the head with your theory about a TIA and the leaving of one side weaker than the other, thus the foot frozen to the floor. In March of 2008 my husband suffered his first TIA, at least the first one I noticed. He had another in October '09 which precipitated his trip to the hospital as he also had a touch of pneumonia and since that time has had several more. As strokes, whether minor or major, always do leave some part of the body with a deficit most likely this is what we are witnessing. With my husband, his right side is much weaker and unable to co-operate than his left side i.e. putting a sweater or sweat shirt on ..... the left arm/hand easily slips into the sleeve whereas putting the right arm/hand into the sleeve is like catching and wrestling with a raging bull ..... its flailing about all over the place and I have to catch it to get the garment on. Its also his right foot/leg that is the most unco-operative.
Tonight mine managed to sit down on the bed so I could remove his socks and compression stocking, and pull the depends and his pj pants onto his legs which were stiff as boards. But I could NOT get him to stand up to pull them over his bum! FInally had to get my daughter to come and use the gait belt to pull him up enough to get the Depends on; I gave up on the pj pants. AARGH!
briegull, I had trouble getting DH to stand but if I told him to straighten your legs, he seemed to understand. Maybe it's time to switch from depends to the diapers. It would make it a lot easier for you. DH didn't even notice when I made the switch. Also they have special pants that I purchased called wheelchair pants. You can put them on without them having to stand up. I didn't get them until he was in the wheelchair full time, but if I had it to do over, I would start using them sooner. I also found that by switching to hospital gowns, it made bedtime easier. Before switching, it seemed that I was rolling him around so much to get him ready for bed that I wore myself out.
I have been using the diapers for weeks. They are harder to put on but he didn't object. I use a tena pad and pull over another pullup depends with the vinyl pants on top of that. I also use the knit cotton exercise shorts as pj bottons. He walks all the time with a shuffle but with all that on he waddles. Even with all the above sometimes he wets the bed but not to often. He did get up the other night and pulled everything off and went back to bed with a bare bottom.
Went through that too, Bama. I washed sheets every morning because he would soak through everything I tried. I felt like I'd won the lotto when I got him up and the bottom sheet wasn't wet. It gets really bad when they strip at night and then have a BM. You think the diapers are harder to put on? I found them easier when he wasn't able to stand. I did have to learn how to roll him to get the diaper under him but rolling was easier than trying to get his bottom up to pull the depends up.
When I first started using diapers he was able to stand by holding on to the dresser next to his bed but he wasn't able to pick up his foot to put the depends on. One morning I was changing him and while putting the diaper on him, it came loose and fell to the floor. I was standing in front of him and knelt down to get it while at the same time trying to keep him balanced. All of a sudden I realized Here he is standing with nothing on and me kneeling down right in front of him. That could have ended in a disaster.
I do have a toilet seat riser and that helps some. I think that my wife's problem with sitting is due to her loss of depth perception. I can be sitting on the couch and she will squat until she is no more than 3 inches above the cushion and then stand back up.
I've already told everone about my experience trying to wash the mattress cover on a sleep number bed. That is a $1,000 mistake! I've also learned to give up mattress pads -- even the ones that are plastic lined. They are a real pain to wash and dry almost every day. I have a plastic cover zipped up over the mattress and just have to strip the bottom sheet most mornings.
I just got off the phone with a friemd whose husband had a massive stroke. He is paralyzed on one side but at least he knows what going to the toilet is all about and can help her in his own care. Like I said, I don't mind the incontenence nearly as much as I mind her resisting my efforts to take care of it.
Baltobob, I stand him in front of the toilet facing me and pull his pants down, then place my arms under his and hug him and whisper in his ear "I've got you - I won't let you fall" "just relax" and he will and sits. I don't know how long that will last, but we've been doing that for about a month now.
Mary, I'll try that tomorrow morning. I have been cheering and giving her a kiss whenever she does sit. Now, how many wives get a kiss just for sitting on the toilet?
The constant battle to get him to take his clothes off for a shower. Then the constant battle to help him put on his clothes. Baltobob, I also clap, hug, & cheer when my husband will use toilet paper. Seems like my only words now are "Good Job"
Right now it's impossible to get dh to shave. And of course he won't let me help. Haven't figured out a solution to this one yet. He's starting to look really shaggy. In an earlier stage he was obsessive about shaving. He would get up in the middle of the night, shave and then come back to bed.
Jeanette, do you have a friend who has one you could borrow to see if he would use it? He could be afraid of cutting himself. My husband lets us shave him with an electric razor. As each stage progresses, what they will and won't do change too....just like their desire for chocolate and nuts and ice cream; and hiding food; and hiding small things!
The old adage that "you can take a horse to water, but you can't make him drink" has taken in a whole list of new meanings:
You can give them a hairbrush, but they won't style their hair. You can give them a toothbrush with paste on it, but you can't make them brush their teeth. You can give them a glass of water, but you can't make them swallow. You can take them to the toilet, but getting them to sit is a chore. You can give them their medicine, but you can't keep them from chewing the pills.