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 A Boost needed from my lbd sisters 
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Joined: Tue Jun 09, 2009 11:11 pm
Posts: 117
Location: Tucson AZ
Post A Boost needed from my lbd sisters
Hi Everyone - today I feel like I can't go one more day with my sweetie. I, like the rest of you, HATE this disease but why do I tend to blame him? Is it because I think he can help it? Today was awful. Took him to meet with a friend at the mall (he likes to get out) and said he needed to go to the bathroom which I know by now means "I'm going to the bathroom as we speak". I rushed him into the mall and family bathroom but could smell it before taking down his pants. Anyway it's a long story but I ended up throwing up at the same time he was doing his stuff as I was trying to clean up crap and it was a huge mess. How do I get him out of there after a little clean up, have him walk half naked to the car??? Okay, now this is sounding funny as I'm typing it picturing my honey walking to the car with only his shirt on and his skinny little legs sticking out. Ha! I'm making myself laugh, that's good huh? Anyways I was not very nice to him and berating and condesending and everything else in the book. I came home and yelled and screamed and hit my fists in pillows and he's just laying on the bed. Of course all of this is exhausting because you have to get them undressed and dressed again and wash clothes for the 2nd time before 10a.m.

I don't like the anger coming out in me, I HATE HATE HATE what this has done to me and my hubby, I hate my reactions and threatened to send him to go live in another city because I'm tired of this!! He DOESN'T deserve this treatment, he doesn't deserve the loudness or the screaming or the drama. I apologized and asked for forgiveness and he is always so gracious even in one word sentences to say I forgive. Do you place him elsewhere because I can't handle body fluids, because I'm embarrased, because I have to work like a janitor all day? Is that beneath me? Will I have the strength to go on?

I think of that song "One day at a time, sweet jesus, that's all I"m asking from you, Lord give me the strength to do everyday what I have to do. Yesterday's gone, sweet Jesus, and tomorrow may never be mine, Lord help me today, SHOW ME THE WAY, one day at a time.

I guess I survived today, God give me the strength for tomorrow and a better gag reflex!

PS, I joined a gym and had a chance to go and work out, it's great for frustrations....temporarily.


Thu Aug 20, 2009 1:04 am
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Joined: Sat Jan 27, 2007 8:38 pm
Posts: 712
Location: CA
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Dear Lori --
Bless you for being so honest! I hear your pain and your anger at yourself -- in fact, your anger at yourself sounds far deeper than your anger at yourself.

You need some respite, girlfriend! Have you check with the area office on aging for your region/county to find out about caregiver respite or other supportive services? Was your husband in the mililtary and have you checked into any VA benefits? Called your local Alz Assoc chapter for help or referrals? Let them know you are at the end of your rope and need some support.

Are you a member of a faith organization -- if so, schedule and appt. with your pastor, rabbi, imam, guru to find some inner peace with your situation.

Others here will have practical suggestions on the gag reflex. Everyone says breathe through your mouth. Only way I'm able to do that is if I literally hold my nose so I have to breath through my mouth. Little sips of water help, as well as teeny sips of pepto.

We hear you and we're here for you!

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Renata (and Jerome-in-Heaven)


Thu Aug 20, 2009 8:54 am
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Joined: Tue Oct 16, 2007 11:27 pm
Posts: 84
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Hi Lori,

I know how your feel, along with every other caregiver in this forum. Some times it just becomes over whelming. I also hate the person it is turning me into and some times its so hard not to take it out of them. Last week was a terrible week and this week started off the same way. I finally had to admit to myself that I cannot care for John the way he should be cared for and on Monday when he woke up and was totally out of it, I then knew that was my sign to get him back to the hospital and see if something physical was going on. After having him checked out with blood work and urine test, I convinced them to have the Psyc doctors check him out and after really fast talking I got the VA to admit him to the hospital to see if anything can be done with his meds. The VA is working with my case worker in our County to see if we can get him placecd in a facility near home because they said he needs 24/7 care and I cannot supply that to him. He has been declining Lewy wise over the last 4 months and physically and mentally I cannot care for him the proper way and sometimes I loose it big time and I do not want to be yelling at him and resenting the fact that I have become a janitor and all the other things that go along with this horrible disease. Don't beat yourself up to much, because we are human too and are doing a task of caregiving that we never thought we would have to handle in this magnatude. Take care.

B


Thu Aug 20, 2009 8:54 am
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
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One thing I learned is that it was *always* better when I had someone there to help me. Sometimes I would get family and sometimes I would pay for a caregiver's help. (Had to be sure it was someone who could deal with poop. Not everyone can.) When such incidents happened, it's so much easier with two people dealing with it.

We had a similar fecal event at WalMart one time. Fortunately I was with someone. And this turned out to be a rather good location for such an event. We took Dad to the bathroom. I went back to the store and bought dishwashing gloves, some garbage bags (to take the soiled stuff home in), a pair of pants, a package of underwear, and new shoes. Thereafter, I always traveled with those items and had many chances to use them.


Thu Aug 20, 2009 9:39 am
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Joined: Wed Oct 08, 2008 10:30 pm
Posts: 976
Location: Henderson, Nv.
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Lori,

Don't beat yourself up...we have all been there, done that. Its not an easy task being a caretaker. We are humans, not trained for this huge undertaking. Its just overwhelming at times. Isn't it amazing though...how we have all dug deep into our inner strengths and come up with the moxy to handle these situations? Who would have ever "thunk it?" :lol:
Yesterday hospice gave my LO a suppository. He did 2 little things and she left. Last evening he had a huge mess..and I do mean huge...had not gone for a week. I tried to clean it amongst gags, etc. He is dead weight and I could not roll him to change him, he was getting his hands in it and getting very angry, punching and kicking...finally I called 2 neighbor ladies who had offered to help me ...it took all 3 of us to clean him up. It is those times that yes...I too think about placing him in a facility...I hear it is the number one reason why people are placed...they can no longer be cared for at home...and usually it is the toileting issues.
Will be thinking of you and praying for you.

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Dianne C.


Thu Aug 20, 2009 11:51 am
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Joined: Sat Jan 31, 2009 7:21 pm
Posts: 172
Location: Ohio
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You guys are all soooo much better at this than I. First of all, my DH isn't so bad with the accidents, but when they occur I just chuck the underwear. I refuse to go further than that. The hygiene, or lack thereof, I'm ignoring & just quietly urging when need be. But today he lashed out at me & really yelled. I think it's too much Zoloft, the dose was increased & I've got to find away to get it back to 150mgms without making him too suspicious. So of course I yelled back & reminded him about how he's never "had it so good" with all the attention I provide & he gives NOTHING! Oh, sorry, he does put out the trash barrel! :roll: Anyway, I'm feeling put out so I come on board to read about what you folks are facing & I can tell you honestly, it will be a nice "facility" when the time comes for us. Between my 94 yr. old mom, my fragile DD on the East coast that I worry about all the time, I am quietly seething........consequently, my sleep is terrible. Sorry to whine, but someone pointed out that it doesn't matter how much you do, (less in my case except for the mental piece) caregiving is so awful. I know he's having psychic suffering, but otherwise I do the rest & I'm getting real worn out. Thanks for listening. I've begun to remember all care givers in my prayers. Dee


Thu Aug 20, 2009 4:48 pm
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Joined: Sat Jan 31, 2009 7:21 pm
Posts: 172
Location: Ohio
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I just read my post & decided I sound like a terribly ungrateful person because there were many years we had that were quite wonderful. I just find it difficult to have so much responsibility for both of us & sometimes I get frightened. Again, thanks for listening & blessings to you all. Dee


Thu Aug 20, 2009 4:53 pm
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Joined: Sat Mar 28, 2009 6:01 pm
Posts: 101
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Dear Dee,
You are having a terrible time, and of course you are worried about what is yet to come. We are all that way, dealing with the cleanups and at the same time anxious about how much more we will have to do, with no help from the person who used to share our worries and be a support. We have lost that support and instead have an ill person we sometimes hardly recognize to take care of in ways we never imagined possible.

Robin is right that you will feel better if you have some help. Do check into the resources available to you, including friends. I have someone part time to help me and believe me, it makes a huge difference. I'm a nicer person than when I have to do everything myself.

Meanwhile, hang in there and do something special for yourself tomorrow.
Doris


Fri Aug 21, 2009 12:51 am
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Joined: Wed Oct 08, 2008 10:30 pm
Posts: 976
Location: Henderson, Nv.
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Hi Dee,

Hey! Being a caregiver isn't for sissies! :lol: I think we have all found out that we are much stronger than we thought we were. You are only human...it isn't a thrill changing adult diapers, messes, etc. None of us like it! Don't be so hard on yourself though. Venting is good for you. Sounds like you need a little time off or some extra help in the house. Go get a pedicure tomorrow or a massage...then look in the mirror and tell yourself what a great job you are doing.
Will keep you in my thoughts and prayers.

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Dianne C.


Fri Aug 21, 2009 3:07 am
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Joined: Fri May 29, 2009 10:06 am
Posts: 42
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Hello to all ladies,

I am in such shock here to think that you all do this for your LO's. I feel so useless and selfish reading all your posts. I have posted before, my Mum is in a nursing home about 5 miles away from where I live in Kilkenny in Ireland. I visit her twice daily and if there is a day that I can't make it I make sure that some relation will visit her that day and spend some time with her. Even though this is all I do, it completely wears me out and like you I HATE what this disease has done to my life, it has robbed me of my wonderful Mum, we have always been so close as I am an only child, and it has robbed my three small children of thier Gran. But just reading your posts now I feel so useless, when my Mum has an accident, two caregivers at the home arrive immediately that I ring the bell and they wash and change her, I honestly know that I would not be able to do this and I dont think Mum would want me doing it either. Mom is definelty deteriorating, almost in bed the whole time now, except up for meals. I wont say incontinent all the time, but definetly a lot of it.
You ladies have my utmost respect, what wonderful women you are - the fairer sex - definetly the strongest sex!!!
You will all be in my prayers.
Annie 41.


Fri Aug 21, 2009 5:24 am
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Joined: Wed Oct 08, 2008 10:30 pm
Posts: 976
Location: Henderson, Nv.
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annie41,

Though you are spared doing the physical work of changing, feeding, bathing, etc. you are still enduring the emotional part of this disease and I believe that is just as difficult to manage. The mental wear is sometimes overwhelming. You are fortunate your "mum" is in a good home. We all are doing our best because we are so deeply in love with our LOs.

Thoughts and prayers to you and your Mum.

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Dianne C.


Fri Aug 21, 2009 10:27 am
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Joined: Fri May 29, 2009 10:06 am
Posts: 42
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Dianne,

Thank you so much for your very kind words, but I don't know if I could do this for my husband if the need ever arose. I adore my husband, who has been my rock through all of this and who treats my Mum with such love that its overwhelming, but when it would come to doing all that you do, I dont know, I would be severely tested. I pray to God that day never comes. I have already told my husband that I dont ever want him or any of my children having to care for me like that. Please please God dont let that day come to us. I know I must sound so weak to you all, especially with all the fantastic work you are doing, but I just dont think I would be able. God Bless You.
Annie 41.


Fri Aug 21, 2009 11:40 am
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Joined: Sat Jan 27, 2007 8:38 pm
Posts: 712
Location: CA
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Annie --
You might surprise yourself at what you could/would do. Remember, all of these issues do not avalanche or cascade at once ... it's a drip, drip, drip (pun intended) of an increasing need for assistance with various needs that build over time. Like the proverbial frog placed in pot of cold water on a flame, you adjust and accept until you reach a breaking point. Some never reach it, and some never have to deal with extreme symptoms (knock on wood). You'd be amazed at how far your love for your dear husband would carry you before you would say "Enough!" Now stop beating yourself up and give your mum a hug from all of us next time you visit!

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Renata (and Jerome-in-Heaven)


Fri Aug 21, 2009 11:57 am
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Joined: Thu Aug 30, 2007 6:15 pm
Posts: 231
Location: Charlotte, NC
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Do not think for ONE MOMENT that when you place your loved one in a facility your caregiving is over. My Tony has been placed for 22 months now and I go every day, 3-9, help him eat, bathe him, put to sleep. It is still VERY HARD both physically and emotionally but I will have it no other way. I placed him because I could not handle the fluctuations and NO SLEEP. The fluctuations are still there and he is currently having swallowing issues, but I do get my sleep and am able to handle the rest. The caregiving is still there, it is just different. I do have Hospice help as well and I cannot say enough about them.


Fri Aug 21, 2009 5:58 pm
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Joined: Wed Oct 08, 2008 10:30 pm
Posts: 976
Location: Henderson, Nv.
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nsalvadore,

I agree with you wholeheartedly. When you are running back and forth to the facility, helping with his care, etc. you are just as involved and the stress is no less...but like you say, you are getting much needed sleep which allows you to care for your LO in a rested state...which in some ways is better.Each way has its own pros and cons. If this gets to be too much for me I too will have to place him in a facility. Actually, hospice yesterday told me sometimes it is good to put them in the hospice facility the final days so you have someone to help you with final care and end of life. They have living rooms attached to the bedroom so family can stay with the LO to the end....that is...if you know the end is about to happen.
You are in my thoughts and prayers.

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Dianne C.


Fri Aug 21, 2009 10:14 pm
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