Hi all...

First of all, y'all are a Godsend. Thank you for all your words and prayers for all of us...

Now...can somebody tell me please why I am overwhelmed with a sudden and intense urge to "quit" this job? Maybe it's just a pity party. I don't know.

My husband, 12 yr old son and I live next door to daddy (duplexes). He will not "give up his stuff", so I just simply live in both houses. His mostly. It's my first move in the morning (get the boy off to school - go to daddy's), stay there through breakfast, dressing, shaving, hygiene care, laundry, bedmaking, vacuum, feed the dog, walk the dog, discuss bowels, day/date orientation board (I have purchased a white wipe off board that I use to keep him apprised of the date - works like a charm), meds, BP check, discuss bowels again, back to my house (throw in a load of laundry, take something out for supper, feed the cat, vacuum), back to daddy's where I stay till the boy comes home from school, back to my house (how was school, need a snack? chores are posted, get to homework) and baaaack to daddy's. Snack, BP check, visit, yes-I-do-have-to-leave, home to cook supper, do dishes, finish laundry (hurryhurryhurry), feed the boy, next door again, feed daddy, visit, discuss his bowels (for the zillionth time), love-you-so-much-I'll-be-right-back, back to my house.....you get the point.

In home health care? He throws a CONNIPTION at the very MENTION of anyone helping. I have finally convinced him that I have a friend he should meet that wants to come over and see him...maybe that will work; I don't know. I have an appointment today to talk to a company.

And here's the worst part. I feel such guilt over being so tired. Over wanting to lay on the sofa for a whole day and watch Maury Povich. Daddy needs me. I am all he has. And I am having a "I am SOOOOOO done" day.

Words of wisdom?

...deb

Take a good deep breath..... I think you are so busy you are forgetting to breath. The routine of a full time caregiver is grueling. There is never enough time and always something more to do. You definitely need some help. There is nothing around with telling you Dad that you want him to meet somebody and then just let them start coming in with you for a while and then without you. You don't have to tell him that you are in desperate need of some couch time and he needs assistance beyond what you can handle. Nonconfrontational manipulation is definitely allowed.

Throw guilt out of your vocabulary as much as possible. The task is overwhelming and you are doing the best you can. You are not super woman but just one of us meer mortals. There are days that you will float through and days that you will be annoyed and days you just want to throw up your hands while you run away. There is nothing wrong with wanting to escape to the couch or the bahama's for that fact. You need a break! So no guilt feelings for being human :-) Get busy getting yourself some help with your Dad and the first day you can leave the two of them alone... lay on the couch for an hour or more.... and don't watch the medical channel discussion of elderly bowel issues......

Love, deb

You are fed up because it is an impossible situation. There are only 24 hours in each day, and yours needs 32.

I had a similar situation with my Mom plus a full time job. It drove me nuts and made me physically sick.

I had always said - including to Mom - that I would stay with her until 'the end' and never never send her to 'one of those horrible places' (as she called every type of help, from assisted living to nursing homes.) Eventually she HAD to go into a NH because of a broken hip --- and we all found out what fools we had been. Mom was way happier there than with me, or, later (after he took pity on me) with my brother for a little while.

I have always tried to present a nursing home as a good and acceptible solution since then. Many people have no idea what a good modern NH is like, and the few bad apples in the barrel have givem them all a bad reputation, for example where 'everyone is drugged and sits around like a zombie all day.'

We did not find that to be the case at all. Mom took part in many interesting activites, enjoyed tremendously the company of other people her age, after being more or less confined to her childrens' homes for safety reasons - and she was already confused enough to call the place 'a spa' or 'a recovery home' and always insisted she was going home as soon as she felt better.

We daughters seem to expect ourselves to be Superwomen and then feel frustrated when we can't do it all.

Please give a NH some serious consideration. As to expense, they do cost a fortune, but after Mom's savings were gone Medicaid paid for it and she got the best possible treatment.

Maybe you can get some other family member to give you a break? You need some time for yourself and your husband and child. You need rest and recreation!

Love,

Martha

deb,

That is not your father, that is some toddler over there in your father's body...now treat him as such. Just as you wouldn't accept that kind of behavior from a toddler, you can't accept it from your father. You are now the adult, and unfortunately, he has regressed (hence the bowels) to the toddler stage. You're bringing someone in to help is not open to discussion. He is not in charge anymore, my dear.:nono: Develop a backbone or you won't be able to lay down on the couch. In fact, it is because you have let this go on that you can't lay down.

Your father is incapable of making decisions. So kindly plug your ears and just venture forth. If you need to get an IPOD so that you can't hear his mutterings, DO SO! I don't mean to make light, but I do mean to try and get through to you that nothing you say is going to change his mind, so you need to do what is best for YOU and him and your family. You need to consider your family in this mess also. THEY deserve to see you healthy and happy also. Your son deserves to have a mother that isn't tired and grumpy and irritated at life in general., And your hubby needs his wife back also (got that one right, didn't i?) Stop and think about your family in addition to your dad and yourself. And for heavens sake, don't forget the dogs! You are the center of this merry go round and if you break down the horses are going to go flying off with no stopping and then there will be all sorts of issues.

There I have said my piece, I shall climb down off of my soap box. May I have a hand? I have back trouble, had a broken back and have lost the use of my left quad muscle so need some support please...not that you would tell by as bossy as I am... :D

Deb, you are doing more than any one person should be expected to do, but it comes with a cost..and that cost can add up to serious complications. Taking care of yourself is not selfish, it is just wise management of your resouces. The head has to be healthy for the rest to survive. Your dad and family need you well. So, step back and take several deep cleansing breaths-thats what you do first. My son says it's the law! Then figure out who can come in to relieve you..Cost be dam*ed...well within reason that is.

I'm cheer you on and holding you up from afar! you go girl! We're not caregivers for nothing.....

Applauds loudly and gives Ibake a helping hand down. You are absolutely right and say it so eloquently. I adore the way you stand up and speak reality in such a kind and compassionate way. Your words have jolted me back to sanity more times than one. THANK YOU!!! Hope this afternoon has been better for you Deb

Love, Deb

You wonderful people rock my world.

This was exactly what I needed to hear. I think we all, being human and all, suffer from some amount of "I-really-don't-know-what-the-hell-I-am-doing" from time to time, and sometimes, when it comes to daddy, I think I am a complete failure. I am sure of it when he tells me (less than an hour ago, following his 3rd meal of the day) that I don't feed him, that he's lonely (I left for 1 hr 45 min to go to my son's field day at school), that he hates where he lives....

If only he were consistent. Some days, he can't get out of bed and is actually urinating on the floor (doesn't like the urinal or commode). Other days, he is up, dressed, eating like there's no tomorrow, complaining...and I can't keep up with the ups and downs. I rejoice in the good days, even though he's a cranky guy sometimes, and mourn the bad days.

But most of all, I miss my life. Oh my. That sounded so very very self serving. But ibake, you hit the nail on the head - I am NO kind of wife, and a pretty poor excuse for a mother. While I am whipping myself, I might as well admit that I am sometimes not a very good caregiver, either. I get resentful.

But now I see that that is all part of it. The man that is coming over to discuss signing up with In Home Health Care is a compassionate and wonderful person, and I don't give a hot damn how much it costs to get help in here. Now the problem will be daddy. He is adamant that he will never want or appreciate in home health care, other than me. I think Deb's idea of gentle deceptive manipulation just might work. I am sure gonna try it. And Martha and ibake, you are so right - it's no longer his decision. The worst that can happen is that he will tell ME to get lost (and that could very well happen), I become immediately 12 again when he's angry, I sulk off home, and then...well, heck, I'd show right back up again the next day.

It's easy to disclose secrets when it's a b l o g. So I will: I always said I would never ever ever ever "put" my dad in a care home. But after y'all's experiences, assurances and love, I can see that moving dad to an assisted living, nursing home, SOMETHING - is in the cards. And I seriously doubt that I will feel crazy-bad about it, either. I just pray that I don't have to do it - that it's indicated medically or something. But frankly, it will be a relief. It won't be this week. Prob'ly not this month. Maybe not even this year. But it's coming.

Thank you, Martha, ibake and deb...

Love to ALL of you...

...deb:)

You are definitely not a failure but you are trying to be to much to too many. You have at least three full time jobs and wonder why you meet yourself coming.

There is no consistent in dementia. There is just the ever changing (good day bad day) with the steady progression downward. Arming ourselves with knowledge helps but there is no manual. There is no right or wrong. Just fumbling through a difficult situation not knowing what will come next.

You definitely need to get your life back. Your father, no matter what the imposter (disease) says, would not want you to give up your life. That is something you need to remember. It is not your Dad saying those things to you, it is the disease. The imposter has control and not your Dad.

One other thing.... never say never and think you mean it!!! I said I would never put Mom or Dad in a "home" and today they are happy in a "home". I have my life back, they are well cared for, and life goes on. I have no regrets because I know they are where they need to be and I am better for it. When the time comes know you are doing what is best for everybody involved. Between now and then.... get some help!

Love, deb

PS..... there are still days I don't know what I am doing!!!!!!! But in my head and heart I know I am doing the best I can, at any given moment, with the knowledge that I have and that's good enough for me.

I also want to encourage everyone dealing with AD to ban the word (and thought) "GUILT" from their volcabulary. You are all doing the best you can, and more than most people would ever attempt. Feel proud of yourselves, feel loved and honored, not guilty. Having been through the whole long lasting ordeal, I am now peaceful, healthy and happy again ... and I am beginning to look back at happy times with my Mom and forget the ugly, awful times.

God bless all caregivers.

Love,

Martha

I would like to go on record publicly stating that my DH is a saint. A real saint, I tell ya.

We bought a new barbeque today. A big one. Stainless steel. All my DH every wanted. And it came disassembled. No problem for my DH; he is a genius with a screwdriver, so he began the arduous process of putting that thing together. I was with dad, and he wanted to see what my DH was up to, it was a gorgeous day, so we walked to our yard, where...*gasp* my loving father wanted to "help". Teetering on his cane, unable to articulate what it was he wanted to do to help - so he just totally got in the way of my DH, a new bbq and a 25 pg instruction manual. I would have lost my mind. Dad was fooling around with all the itty bitty pieces, losing some in the grass, just generally being difficult. I kept trying to get daddy to sit down in the shade with me, but no go. He just kept fooling around with all the tools (anybody seen my phillips head screwdriver? Oh, thanks, daddy.) and spilling all the little washers all over the grass.

DH got the bbq all put together, then gave our old one to our neighbor who has been trying to bbq on a Hibachi for his family of 5.

Therein fell the absolute total trantrum for daddy. Daddy had given us that bbq 5 years ago. We used it to death. It is done. But our neighbor/friend was ever-so-grateful to get it, shined it all up till it looked like new...but dad wanted it back. One of you lovely ladies told me that daddy is basically a toddler now. And that one little piece of information saved the day. I tried to imagine one of my children at age 3 or so finding out that I was taking some of his old toys that he never played with to the Goodwill. There would have been a complete meltdown. So applying that knowledge to this situation, I simply stated that we did not need the old bbq any longer and that our friend would love it forever. Matter of fact with no embelishment.

Daddy just threw a fit. Even tried stomping off home. Can't stomp, so he shuffled off angrily home. Refused to even speak to me. His tantrum lasted three HOURS. Then, I went to the kitchen and fixed him some fruit...and he had forgotten all about being angry. He was even glad that the old bbq found such a loving home.

Toddler. Such good information. So true.

I just kissed him goodnight and tucked him in. Another day bites the dust. Another day he could enjoy the taste of freshly cut pineapple, another day he could feel the sun on his thin skin. Another day I got to kiss him goodnight. Tantrum notwithstanding - a good day.

...deb

It's easy to disclose secrets when it's a b l o g. So I will: I always said I would never ever ever ever "put" my dad in a care home. But after y'all's experiences, assurances and love, I can see that moving dad to an assisted living, nursing home, SOMETHING - is in the cards. And I seriously doubt that I will feel crazy-bad about it, either. I just pray that I don't have to do it - that it's indicated medically or something. But frankly, it will be a relief. It won't be this week. Prob'ly not this month. Maybe not even this year. But it's coming.

We tried for two years to get my mom (early Alzheimer's at that point) and dad to move near me and my sister (2 hrs. away). Only when my dad suffered some TIAs (vascular dementia) did we move them near us---my dad first because he needed the care. I lived with my mom at their house for 6 months, and then we had to tell her that she was going to move into the assisted living. Very difficult. I felt like I was betraying her in some way.

My mom has made many new friends over the last 4 years, and she has had a much richer life than if she and Dad had stayed in our family home. It's a very difficult decision for your dad; my dad would never have voluntarily left his home either! If an elderly person can get over the hump of making the decision to move to an AL facility, it seems that they often really enjoy themselves.

My mom has now moved to the Alzheimer's section of the AL, and I had the same misgivings about my mom being in an "Alzheimer's unit" as I did about the AL. I was wrong. The noise, commotion, etc. is nothing like what it was in the AL. She is happier and better cared for now.

I have been wrong several times in this journey, and each time I was expecting Mom to still be the person I had always known. Thankfully, we have had experienced people to nudge us back to the realization that the old person is gone.

One of the things I remember reading on the forum (not exactly sure this morning who said it) was that we move our loved ones to a facility when WE are ready. It's not about them as much as it is about us and when we have had enough. Most times they will adjust and the definitely get better care from full time professionals that get to go home and sleep at night than they can from a sleep deprived single care giver no matter how much we love them or what promises we have made. The job is bigger than one person can handle and when we grasp that idea we can move forward.

Just my two cents before I run out the door.

Love, deb