I am having a sad day. I go along and feel pretty good for a couple weeks and then something hits me. And then I get scared and think I CANT do this (this being the scary Alz future in front of me). How will I possibly have enough patience? not to mention courage, compassion, kindness and understanding? Today I took DH to the pool where he swims laps, I've been taking him for about 3 wks. He used to go on his own but can't manage that anymore. He really can't swim laps anymore either. He gets halfway across the pool and then comes back on a diagonal path. And its a few strokes, then walks. And just comes back to where I am. When he gets out of the pool he has to dry every single drop of water off of himself, which takes forever and it is sooo hot here (Phoenix). He's 62 and he walks like he's 92. Then when putting his shirt on he couldn't get his arm to go in the second sleeve. I tried to discreetly help him, he gets mad and pulls away. It was just all a little too much for me this morning.
I would love to have a couple ice cold martinis and drink this all away, but I've got too much to do. So if anyone would care to send me some "patience vibes" to help me get through this day, I would really appreciate it.
Ah, patience. I'd send you some of mine, but I don't have any. I try. I really do. Some days I think I succeed, but it's a constant struggle.
I know it sounds like a worn out cliche, but with AD, I absolutely believe in "one day at a time". You will feel overwhelmed if you worry about how you will handle the later stages. We have enough right now in the stage they're in.
So I can't send you patience, but I can send you my support and understanding.
Check out the discussion on this board titled "Stress vs. Patience". It's on page 11. It may be of some help to you to know that others are right with you.
oh, hi, shoegirl -- I just want to say that I know you CAN do this, even tho today, it feels as tho you cannot. Today is your "sad day", but perhaps tomorrow will be better. It's okay to not be Mother Teresa each & every day...perhaps your DH will forgive you & you in turn will forgive yourself. We have to, for none of us are strong enough to do this 24x7 every day, perfectly!! Each day is a new beginning, a new start...and hopefully tomorrow you will have enough strength to have a good day, in spite of what is happening. My husb is 62 also and I totally think he many days walks like he's 92 as well. And as for the swimming pool thing, my husb used to LOVE LOVE LOVE to swim, float around on the float we have, etc. Yesterday it was so hard, I just had to LAUGH (after a margarita) trying to get him even INTO the pool, let alone on the float...we finally did & he floated around for 20 min or so, and LOVED it!!...it's HOT here too!! TEXAS!! He sat out under our umbrella for a while yesterday too while I cleaned windows & screens...I try to stay BUSY doing the things I like to do too, and it always helps if my husb can 'watch', even tho he may not be able to help. Again, don't be too hard on yourself...as you said, you'll go along "pretty good"...then 'something hits you'...it happens to me too...and I just have to SCREAM and PRAY...those two things don't seem to go together, but I know that GOD knows me well enough to know that I'm perhaps not as strong as I think I am sometimes & I too need a BREAK!! I hope this has encouraged you!! xoxo
One more thing...MUSIC helps!! As I 'cleaned screens' yesterday, we had 50's & 60's music playing from SIRIUS radio!! It's hard to be "down" when music gets into your head & then moves into your feet!! My 'shammy' got a musical workout as I danced all over that backyard!! My husb thought it was hilarious too :) Smiles are so encouraging to me from my husb :)
Just like everything else i have had to 'save' lately I try to set aside a reasonable amount of 'patience' dust everytime I accumulate an extra bit-just for a rainy day.:) lately its been sunny here, so heres to you my friend, a share of my stash, its quite heavenly!! can you see the twinkling dust over your head??? divvi ..wouldnt it be nice to be able to bottle it??:)
Sorry no patience to spare, however, I do pray everynight for all families who have loved ones who suffer from dementia. I pray for Strength, Guidance & Lots of Patience. Can send (((((Hugs))))though. Kadee
You are not alone and you will never be alone now that you have found this site. It is the only place in this world you can say what you want, be angry, be sad, be happy, and you can share it here and we still will love you and understand. There is nothing you can say here about your spouse that is shocking or unheard of. We have all been there or we are on our way to going there. No one can have patience every day all the time. You may not be known, but you are loved and understood. Take a happy pill, something sweet does it for me most of the time.
Just when you think it can't get any worse...it does! My DH can only get to the second step of the pool. I used to coax and drag him down the steps to show him that he can stand in the water and walk around, but now I just let him play on the step. And when he tells me that he went across the pool, I bite my tongue. I just don't want it to be this way...I can't believe that this is what I'm living and think that someday I'll wake up from this nightmare. I know when I don't have patience and yell and ask him to do things he can't do, it's because I haven't come to terms with this and accepted it. And when I do placate him and let him believe whatever he wants, I feel like it's all phony and we're just playing a game.
I had a great afternoon walking around a craft fair today. I realized that the days of doing any kind of walking around with my DH are gone..he, too, shuffles like a 90 year old...sometimes I can't believe how slowly it is possible to walk, but I think he just forgets to keep putting one foot in front of the other.
It is true that although I can't help sneaking a peek at what might be coming next, it is very important to focus on today and wait until tomorrow to worry about it!
I haven't been to the pool all summer. When my daughter takes her son to our pool, one of us has to go with them. Those are the rules. The two times they went, my husband went too, but did not put on his swimming trunks. So guess what? I bet he has the pool "thing" too.
We went to the Kutztown Folk Festival yesterday, and my daughter complained that he walks so slow. She got him to move a bit faster by putting our grandson between them, holding both hands. As a result he did move a bit more quickly.
And this is a man who goes out and takes 2 hour walks, and who I know goes pretty long distances doing it. ...[sigh]...
we have a pool too, and for yrs i havent been able to get DH past the steps:) he just sits there and is so afraid of the water now. refuses to budge in or out at times- its like pulling teeth and he could easily walk around. i would have to lead him back out i think he couldnt see the watr or steps well..ok, another sign, no bathing suit or pools either! he sits in the shade and watches then gets irritated with the heat and wants to go in 5min after sitting down. sound familiar?divvi
Thank you all for your support--it means the world to me! After I posted that I went to the grocery store and sat in the parking lot with the AC on and cried for about 5 minutes. Havent been able to do that for a while and it helped. And I took my niece to a movie...good escape. Thanks natsmom, I can see how screaming and praying go together quite nicely. Divvi, I feel the twinkling dust and not just because I drank two glasses of wine. And its good to know I am not alone in this pool thing...tomorrow's another day! Love you all.
My main need for patience is at night. DW does reasonably well during the day. Last night, as usual, I got her up to "pee" each time I did. We have a comode in the bedroom. I had to tell her to raise the lid. One time she couldn't figure out what I meant so I had to get up and do it for her. I also have to get up and pull her Depends down. Otherwise she would just sit on the comode and pee in her Depends. I must admit I got a bit angry with her last night. Maybe tonight will be better.
Oh Marsh, I can totally relate! It seems when "we" are tired, our LO seems to be even more confused than they normally are. And if we are "half asleep", it takes a while to 'get into gear', which includes the ability to even think about patience, let alone act on it. Of course, once we are "fully awake", & get everything handled, then it may be hard to get back into bed ourselves...I ran into this problem last week & just decided to "stay up" (4:30a.m.) & I found I got alot done! However, VERY tired later in the day...one thing leads to another :(
Patience?? let me tell you i just went thru a serious challenge with regards to patience issues. While i was merrily typing away earlier, DH quietly messed the entire company bathroom with white carpets, then stepped in it and keenly distributed it around every carpet in the house. Patience?, ah yes, the name of the game --now, as i see it-its the disease against me personally now, and it will win in the end but i am giving it a run for the money in the meantime. I SMILED at my DH and hugged him and very quietly guided him to the shower and cleaned him up noting that with smiles and laughing jokes about it, he was quite willing to get in and get cleaned up. i told him in a very nonchalant way that he was making me 'work for my upkeep 'today-(which he said yes i am) and that today was a very special day- as it was my Graduation Day- that today i received my PHD degree in POO-OLOGY...! it has taken those Countless times of ranting and screaming at the top of my lungs about having to deal with the incontinence issues, and today i can honestly say i WON this round against AD. it feels good -this is for those of you who think you can never get past the incontinence part if/when you have to deal with it. and boy does it take time to acquire but it is possible. divvi
divvi, after reading this post, I calmly got up and poured myself a glass of wine. It just knocked the wind out of me. I just had to sit down & take a breath, and it wasn't even me dealing with it. Maybe we will all be actors/actresses in our next lives. Sure are getting the practice.
Never, Never, Never...I couldn't deal with it and I will not deal with it...there is a limit and that is where I draw the line. I am too old and there are too many places that he can live that are trained in this kind of thing...I am not and I don't want to learn. I am bitter today...can you tell. He certainly can't get any pleasure out of making a mess like that and look at the work you have to do unless you have live in help.
Divvi, You are also my hero. I know I am not going to be able to handle that part of caregiving when the time comes. I just hope you were not answering my earlier post, while all this was taking place.
divvi - After reading your post I didn't feel so sorry for myself - all I had was dog poop on one shoe! I noticed it and they were taken off before coming in the rig. So, I got the toothbrush and went outside and cleaned it all off - and so thankful to know someone with white carpet did so much more!
I'm with Judith on this one. I could never do it. I will never do it. It would be time for a "placement" in a care facility for me when it got to this point. Still recovering from just reading about it.
I don't know if I could or would do it. I do know there is a LOT to learn/put up with when you become a caregiver of someone with Alz. Divvi, if there are any medals to be given out I nominate you and Joan. Maybe we could start a medal of honor page. I'll probably never make it. When God was handing out patience he ran out when he got to me.
God must have seen me next because he had no patience left for me either. i certainly understand for those that cannot afford help, placement, etc. that they are between a rock and a hard place. But, I know that I just couldn't do that and I will be a able to afford care when the time comes and I think I will know it when I see it and hopefully it isn't brown.
I can appreciate everyones outlook -some can, some cant, some wont. You are probably right in that when it get s to this point, many would choose placement as an option. In my case, I still have the need to have him at home, as impossible as it seems sometimes. I most certainly dont want to sound like some sort of martyr for getting to this point in my caregiving efforts- but its just that tackling, battling, and finally overcoming a specific issue which is so profoundly repugnant to everyone has given me courage to think i can get thru this to the 'end' when before i wasnt so sure-. Looking at it from a pyschoanalytical point of view,i guess you can say i need these obnoxious tests to help me toughen up emotionally even further, for whats ahead, so i dont lose my mind when I do have to surrender in the end. divvi
divvi, I salute you! Your sense of humor will save you! I'm back from our vacation, and just beginning to read and catch up! WOW! After being gone a week, I've got a lot to read! I'm one who checks Joan's place several times each day, so I had no idea how far behind I'd be! :)
I have to comment on divvi's situation, because when I try to picture it at first, I think "no," but then I remembered that my children, when being potty trained, would occasionally have accidents, and I had to clean it up, so I might have to revert to a chore I did over 36 years ago! Not pleasant, but bearable. And hopefully, not often! My DH has not gotten to that stage as yet though. Thank goodness!
Since this discussion is labeled "Got Patience" - I'll mention my latest episode of lost patience! I don't have patience when he ignores me and goes outside in his brand new slacks and slides along the concrete to pull weeds out of the grass and ruins the slacks! Whenever I ask him to stop doing something that could hurt him or mess up what I have already done and he ignores me and continues to do what he was doing, and will NOT be redirected, then I lose my patience! I get so angry! Then, my patience returns, I settle back down until the next episode.
divvi, you are my hero. Will I be able to do it? Don't have a clue. But in February I was so sick I threw up and messed myself and my bed at the same time. And HE cleaned it up. So maybe I will be able to do it too.
divvi, I also am faced with the poo problem and have found it to be the least of the caregiving worry that I have. The only thing that I have a problem with in that department is the fact that my DH becomes combative when I try to clean him up. I have been in that battle for well over two years now. Am still trudging on. I truly think the bowel incontinence, the urine incontinence, and all other combined does not bother me half as much as not being able to get my husband to understand what I am doing when I do clean him up. No understanding whatsoever. That is the hardest part for me.
Jane, does he physically try to prevent you from cleaning him, or is it verbal? My DH had a couple of accidents in the bathroom on our trip, but he cleaned himself up. I know this is coming, and have no idea how to handle it.
It's amazing how cleaning up poo comes back to you. It really isn't a lot different from cleaning a four-year-old.
But this is why I give my DH an immodium every morning. It doesn't come on him unexpectedly as it was doing. And he wears "whities' so if he doesn't quite make it, it's easy enough to dispose of it.
I'm not looking forward to the "poop" stage. When our kids were young it was my wife who cleaned their diapers most of the time. The excuse was that I was the one working and she was home. I also remember a time when I had severe gastroenteritis. I tried to get to the bathroom, but lost it from both ends at the same time by our bedroom door. If she could clean that up, I guess I can take care of her now.
I hate to be the bearer of bad news, but i think there comes a time when they dont remember or chose not to remember? -like mine, where or why they need to use the bathroom. -Jane, my DH was also super combative when trying to clean him up for YEARS. just recently since taking him off namenda has he become so very different and completely docile and is quite complacent. not saying that in every case namenda could be causing aggitation but it may be worth looking into -divvi
Jean..that was meant as a joke...I've got a strange sense of humor too. It is really amazing the things you/I and everyone else says they can't do and yet we probably can and will. God bless all of us care givers.
I am so in awe of you that can deal with the pooh issue..I think that will be a breaking point for me..that said, I am dealing with potty training a puppy that I clean up after (at least on the outside deck) on a daily basis...maybe the difference is location? I don't know ..this totaly blows me away to contemplate...the difference is between a 35 pound pup and a 6'6" /200 pound man. I think I want to stay in denial for a while longer. Damn, but how did we manage before Joan started this web site? My stomach is already better from just having this to go to several times daily.
I agree with Divvi that perhaps they "forget" that they need to "go somewhere" to go to the restroom. We are dealing with just the urine incontinence, but I know the other is coming...right now we are dealing with being sure there is indeed a bowel mvmt each & every day...today there was not. Even with several doses of metamucil...been doing the metamucil DAILY, but some days, there just isn't anything moving ~ tomorrow, it will be OVERLOAD & plunger time for the 'movement'.
Jane, not sure, but what I have found that "works" is TALKING each & every step of the way through the 'clean up' process with my DH. "This will be cold" or "This will be warm" or "I'm going to wipe a little in there & I'll be gentle but it might be a little cold like this"...then rub the wipe onto his hiney b4 actually going into the area to be cleaned...this has helped TREMENDOUSLY! My DH even said "Y'all are doing so good"!! Like there's a "team" of us clean-up girls!! HA! I used to get really PO'd when he'd say stuff like that because I'M DOING IT ALL! BUT, now I just grin to myself & hug him tightly when we are through...He hugs back :) For now, it works.
Natsmom, I started doing that, too. I mostly started doing it to keep myself sane and hear a friendly voice, but I noticed it helped her calm down, too. I talked myself through each bathtub step just about verbatim of your post! And she was much more accepting and agreeable, and even talked back a little, like "OK" or "That feels nice". It felt good to get that kind of affirmation. I had forgotten that.
Yes, any bit of "affirmation" is so so good!! I find that I am 'able' to handle things more, even if they are not pleasant, if I feel loved & affirmed...hummmm, what a concept! Almost human! LOL!
haha. ya'll are quite funny- yep people we have to keep our sense of humour or we will go totally bonkers right alongside of our dear spouses. Natsmom, i know the overload feeling-you know its coming.hahaha! well guys, the other bottom line is sometimes they just have upset stomach no matter WHAT you do, and all is medicine we stuff into them daily for all sorts of issues, is complicating their poor systems. God help us we ourselves never are in this dependent position..i have been overly 'chatty' lately in wayy too many posts for some reason, and felt regret posting alot of such personal issues and laying it all out there. i am going to try to lay low for a while and just read what others are dealing with for a change. divvi
No divvi don't lay low unless it will help YOU...I love your posts and this latest poop thing was a shock and eye opener for many of us. My first reaction was NO WAY could I handle this and then after the discussion went on I seemed to think it through from a different angle and you know what??? I can clean up after him if and when the time comes and I will do whatever it takes....at least I will give it a try.
divvi - don't stop. You help the rest of us! Well, looks as if we graduated in to the incontinence group last night. From now on I am going to insist of DH wearing protection - gave in last night and am now washing the mattress pad and all else. Darn, not as much a mess as 'poop', but depressing none the less.
Trying to be a 'lurker' for a bit, so far not working:) thanks for the validation, incontinence issues are never the appealing kind of topics to discuss, but in this disease its going to surface anytime/anywhere as you can see more and more of us are having confrontations headon. divvi
ok, i am no good as a lurker. just hoping i can contribute without freaking everyone out now.:) today we have issues with gout! ouch. its beenover a yr without any issues then today hes in alot of pain but wont stay off it. time to 'pace' theres no keeping them down even with pain it seems. he cusses at every step, whish i could do more gave half pill for inflammation it better work..anothr thing to worry about now.
GLAD YOU'RE NOT GOING TO BE A LURKER! Oh shoot, after my glass of wine, I was totally o.k. I just felt for you, that's all. Don't hold back just because I'm a sissy.
divvi, Interesting how you can make gout seem like a hassle after dealing with bowel incontinence. (Personally, I am still dismayed at the prospect of managing the hemorrhoids down the road.) Please hang around. We need the benefit of your experience. Just cause we don't like the prospect, doesn't mean we don't want to have you vent/educate/explain your "challenges."
(Val, you'd better save that wine. You'll need it once school starts!)
divvi, you are an inspiration and have given me hope that I can improve in patience. I have a long, long way to go. How you are able to take all this in stride and still keep your sense of humor is awesome. I don't think I could handle it.
Sandy, you will find you also have a unique resilience that fortifies along with caregiving. you will learn to improvise, tell white lies suiting the situation:), ignore what irritates you, and make the best of what you are dealt and handle is with grace and a practical attitude the best you can-the new motto is, 'I CAN DO THIS". divvi