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I can't think straight
Internal Administrator
Posted: Tuesday, January 17, 2012 3:10 PM
Joined: 1/14/2015
Posts: 40463


Originally posted by: arteche

Confused ConfusedI think I'm having anxiety attack, does anyone ever feel like that. I've been doing my breathing but it doesn't help. I can't think straight, I'm getting lazy, everything is hurting, I don't feel like going anywhere. Besides all that I'm still in the guest room, 3 days, I tell him why when he comes looking for me but still doesn't take his bath. I've sent a message to the Alz Ass., but haven't heard yet. I'm just getting so tired of this and yet I see so many of you that have it so much worse but right now I feel like I'm the one who needs help. He did clean up the kitchen when I asked him to,after I cooked up his dinner. bold Anyone of you have these awful feelings, please, tell me I'm not the only one...Deanna from Az.
Anonymous
Posted: Tuesday, January 17, 2012 3:10 PM
Originally posted by: Mimi S.

Hi EAsville,
Welcome to our Forum. We're so glad you finally came alive. Thanks for your input.

All Care Givers need to read as much as they can about the disease.

All Care Givers need respite.

Do tell us more about your situation.
Anonymous
Posted: Tuesday, January 17, 2012 3:10 PM
Originally posted by: ESaville

Hi Mimi
And thanks for welcoming me. My situation is a little complicated. My DH of 27 yrs. had a 5 way bypass some 10 yrs. ago. He was national security paramilitary for 25 yrs, and was a POW, as well as accumulating a number of significant bumps on the head. He's been on Aricept for 7 yrs. now, and while he is still apparently functional to most people and our friends, symptoms are increasing. He is professionally a master of misinformation, confabulation and sneakiness. There is no differential diagnosis of AD vs. FTD vs. PTSD vs. oxygen deprivation (oh yeah, he's supposed to be on O2 24/7 and refuses!) I've decided it doesn't matter what we call it. Currently, he follows me around like a puppy or watches TV all day. His manners have deteriorated to the point where I'm embarrassed often, his personal hygiene is atrocious, he's beginning to lose his balance occasionally, forgets words and becomes absolutely furious (he used to speak 6 languages fluently) and he has become the most oblivious/obtuse and inconsiderate person I ever met. But I still love him, and I'm in for the duration. I have a lot to be thankful for, a good support system, a nice place to live, and a commitment to a very special partner who has more than paid his dues.
Because he was tortured, just cutting his toenails is a real battle, and requires tranquilizers. I have to remember that who he is now has nothing to do with me, is not a personal or professional vendetta. The hurtful things he does are totally unconscious. I just hope and pray that the bad memories of all his horrible experiences stay gone during this illness!
Thank you all so much for being here. I've learned so much already, and you all are a real God-send some nights at about 1 am when the house is quiet and I finally get to remember what MY name is.....bright blessings to every one. Emily
Anonymous
Posted: Tuesday, January 17, 2012 3:10 PM
Originally posted by: ESaville

Hi, I'm new to posting--have been a lurker for awhile. I know about the anxiety attack feelings. It's "how much more can I take and still keep MY sanity?" that jumps at me very often. My husband won't take a shower without a big campaign on my part, and hasn't brushed his teeth for quite a while. At first I took it personally---even though I'm a retired RN and should know better--but this is anosognosia and really has nothing to do with me. I wasted quite a bit of time with a psychological counselor who wanted me to do behavior mod. with my husband. This is dementia of some sort, not passive-agressive, infantile narcissism. I know that for me these last few months, that learning to practice detachment--not taking this junk seriously or personally is really helping. When I am tempted to lock myself in the guest room, I go for a walk instead, or pull weeds, or even chop wood (great for anger release!) I can't change the disease or course of it, I can only change my response to it. It is very very difficult, I agree. But I have to take care of myself firstly, or the whole thing, including HIS care falls apart. I don't have a choice, and I can't afford to get depressed at this point. Figure out how you can get some private, quiet time and a regular nap. You are definitely not alone Deanna, and feeling the way you do is entirely appropriate to the situation. We just can't give into the temptation to shut down and run away forever--somebody has to be the caregiver here. He wouldn't chose to put you through this, believe it. Sending hugs and prayers, Emily
Anonymous
Posted: Tuesday, January 17, 2012 3:10 PM
Originally posted by: Snorky

Esaville,
My heart also goes out to you. Your DH must have suffered so much for all of us when he went thru all the torture etc. I feel so touched by what he did for me. Makes me teary that he has gone thru so much. Not fair but then we don't always get to choose what happens to us do we? I understand what you're going through as my DH who was also very smart has changed so much and it's so hard to accept what he has become. Most of the time he is good and very helpful(too much)but the last couple weeks has been really stinky about no driving. He's been fairly good for the last 2 yrs. that he hasn't driven but is very vocal and angry lately. He says if his Dr.(who he sees Mon.)can't fix it he is going to Dr. OZ. He's going to quit mowing as that is like driving he says and I can mow. He's very inconsiderate the last week or so and very self centered. Everything is about him. He also is getting bad about showering and using soap. Yesterday was very bad with an argument about driving with me in tears to end it. But I don't need to go there, it's better today. Didn't mean to get on myself.
Anonymous
Posted: Tuesday, January 17, 2012 3:10 PM
Originally posted by: jfkoc

Aha, you did move into the guest bedroom. Put a TV in...he may never take a bath. Hope our back is OK.
Anonymous
Posted: Tuesday, January 17, 2012 3:10 PM
Originally posted by: Mimi S.

HI ESaville,
My heart goes out to you.
Get a copy of 'Creating Moments of Joy" by Jolene
Brackey. I think it will help with the behaviors he's exhibiting.

Good luck.
Anonymous
Posted: Tuesday, January 17, 2012 3:10 PM
Originally posted by: SnowyLynne

I have days when I can't think too straight.....I have a good excuse I have dementia,but it's really not that big a deal I just laugh & go on......No other way to do it for me......
Anonymous
Posted: Tuesday, January 17, 2012 3:10 PM
Originally posted by: ESaville

Thank you Mimi and Snorky and everybody. It's so nice to know you are there and can validate some of these experiences! Can you believe the rascal called up the neuropsych and cancelled his appt. for next month? It takes six months to get in!!! On the last visit, he was angry with me and made me wait outside, so I have no idea of what really went down, but DH insists the doc said his memory was just fine, no changes, and that he had a remarkable vocabulary. Now he says there's no reason to see the Doctor since there is nothing wrong. I'm sending his internist a fax tomorrow so she can tell him to see the neuro-psych at his appt. with her next week. It would be a hilarious play sometimes, if I could hide in the audience.....Thanks for listening!
Anonymous
Posted: Tuesday, January 17, 2012 3:10 PM
Originally posted by: jfkoc

What a nightmare. Can you possibly figure out why he will not shower? Do you go to bed at the same time so that you might tell him it is time for a shower if you are going to get into the bed with him? Can you get him to get into the shower to help you?

At one time didn't he offer to sleep in his office? Maybe that is the only solution.
Anonymous
Posted: Tuesday, January 17, 2012 3:10 PM
Originally posted by: JAB

quote:
I see so many of you that have it so much worse but right now I feel like I'm the one who needs help.

Deanna, dear, you need to remember that most of the rest of us are pretty healthy ourselves. That makes a huge difference in what is "worse" or "better".

When you're having a panic attack, have you tried calling the Alz Assoc 24/7 help line? The number is in the upper right-hand corner of every page on this web site. They are very good at helping you calm down, and figure out how to deal with the issues that are sparking your anxiety.

Many, many, many caregivers feel the way you do. That's why the help line is there.
Anonymous
Posted: Tuesday, January 17, 2012 3:10 PM
Originally posted by: Iris L.

quote:
Originally posted by Mimi S.:
And the brighter the person once was, the harder to diagnose and the more devious they can be.


I don't think bright people are harder to diagnose. The diagnosis is made by a change in the patient's prior behavior and cognition. The doctors are just lazy and don't want to work. I don't know why. They get paid just the same.

Iris L.
Anonymous
Posted: Tuesday, January 17, 2012 3:10 PM
Originally posted by: Mimi S.

ESaville,
Everything he'd done has been done before. And the brighter the person once was, the harder to diagnose and the more devious they can be.
Anonymous
Posted: Tuesday, January 17, 2012 3:10 PM
Originally posted by: arteche

Last few days haven't been bad, is it the calm before the storm. This is day 4 he still comes looking for me but I make out I'm sleeping. Looks like he doesn't understand why I'm sleeping in the guestroom,although I've told him this 2 nights. I have no room for a t.v. in this room and not sure I have cable in this room. What am I going to do I can't sleep here forever, I miss my room ,bed and stuff. This descease really s---s, who else has this feeling of panic attack ????????? Deanna from Az.
Anonymous
Posted: Tuesday, January 17, 2012 3:10 PM
Originally posted by: Cathy J. M.

Deana, are you considering the possibility of placing your husband in a facility? You could still visit him daily -- or however often you wished -- and the staff would find a way to bathe him, dress him, get him to eat, put him to bed etc.

Sometimes this really does work out best.
Anonymous
Posted: Tuesday, January 17, 2012 3:10 PM
Originally posted by: lurk

quote:
Originally posted by arteche:
Last few days haven't been bad, is it the calm before the storm. This is day 4 he still comes looking for me but I make out I'm sleeping. Looks like he doesn't understand why I'm sleeping in the guestroom,although I've told him this 2 nights. I have no room for a t.v. in this room and not sure I have cable in this room. What am I going to do I can't sleep here forever, I miss my room ,bed and stuff. This descease really s---s, who else has this feeling of panic attack ????????? Deanna from Az.


Of all the people on the board for whom I feel compassion, you are the one for whom I feel the most compassion. And I have a question for the experienced minds here, isn't there a line beyond which one needs not go??? This would be the line for me. I would refuse to live with a person who would not bathe.

I have a question. What was he like in the "olden days"--before AD? Was he always a slob (sorry) so that you just got used to it?

I don't have an answer for you, but I have one for me if the time ever came. We would just shower together. My DH would never object to that. He would be in there in a flash. Sure hope it never comes to that.

Don't mean to be trite; I feel deeply for you especially as I also have arthritis and hurt all the time. If you don't find an answer, for heaven's sake come up behind him and hose him down. I'm serious (almost).
Anonymous
Posted: Tuesday, January 17, 2012 3:10 PM
Originally posted by: cloudvacation

please forgive me if you've already seen this, but did you see the help on the Alz Asso home page? Go to Living with Alz, then Caring for Alz, then Daily Care, then Bathing, and it gives some tips.

I was diagnosed with panic attacks after hubby's Alz diagnosis. I got a strong pill for occasional use. Sometimes I just cry and cry and think I can't go on. But then I break it down into little pieces and just do one little bit.

Can you get him to sleep in the guest room and you in your room?
Anonymous
Posted: Tuesday, January 17, 2012 3:10 PM
Originally posted by: Mimi S.

Iris, By being harder to diagnose, I probably should have said they are much better at covering up. I can remember years ago in the middle of conversing, I would realize I couldn't come up with a word I needed and quicker than an eyeblink I said something different. I knew, no one else did.

That's why my diagnosis was such a shock. I was very good at covering up.
Anonymous
Posted: Tuesday, January 17, 2012 3:10 PM
Originally posted by: jfkoc

lurk...agreed, no one wants to make light but sometimes we really ned to think out of the box. I think I went so far as to suggest a run through the sprinkler. You just do not know what might work.
Anonymous
Posted: Tuesday, January 17, 2012 3:10 PM
Originally posted by: jfkoc

My frequent mantra...let it get better or worse cuz this is really exhausting physically, mentally and emotionally. When I can't breathe I take 1/2 a Xanaxx. Only need about 1/2 once a week. Just knowing that med is on the shelf is a big help.

Guess he would not clean up the bathroom himself. UGH!!!
Anonymous
Posted: Tuesday, January 17, 2012 3:10 PM
Originally posted by: JAB

quote:
I don't think bright people are harder to diagnose. The diagnosis is made by a change in the patient's prior behavior and cognition.

Ah, but the doctor doesn't know what the patient's prior "baseline" was. Take, for example, the MMSE. Doctors tend to think there are set cut-off points for what constitutes cognitive impairment ... if the patient gets a "24", the patient is fine.

Actually, patients with higher IQs and/or more education will score higher than patients who have the same level of dementia but have lower IQs and/or less education. The cut-off point needs to be adjusted ... but rarely is. A "27" in a person such as my husband would be very clear indication of a serious problem. Yet for a person with less than 8 years of education, even an "18" might be normal.

Very few doctors realize this.
Anonymous
Posted: Tuesday, January 17, 2012 3:10 PM
Originally posted by: arteche

I don't think I could get him to goto a facility, he is some what alert enough to say "I'm not going", I so much would like to do it because as most of you already know, I'm handicapped myself. It's really getting to me, I'm starting to wish that he would get worse so I can get some peace. I do love him but I don't know how much longer I could do this. I'm lucky I can still get out for short getaways but I'm finding this is not enough. I'm already taking anti-depressions so I don't know what else I could do for myself. Cathyjm how could ever get him to go, he does get up and gets dressed, goes to the bathroom, he has had one bad accident(all over the bathroom and I mean all over), it was so hard for me to clean up, it was even on the walls. He sits and converses with my kids and Grandkids and even sits and plays cards some times he surprises us. Cloudvacation:::::Allthoughm I think I wentthrough those channels, I wrote it all down and give it a try, I can't have him in my guestroom this is where my computor is, he could sleep in what he calls his office (DISASTER ROOM) is what I call it, I am going to try talking him into it. He went to bed last night, I stayed up, he came out to ask me if I was sleeping in my computor room and I said I can't sleep with him until he bathes but I don't think he'll remember. I wish this could come to an end. Thank you all of you for listening..... Frowner Frowner Frowner Deanna from AZ
Anonymous
Posted: Tuesday, January 17, 2012 3:10 PM
Originally posted by: Mimi S.

Hi Deanna,

"Deanna, you're the caregiver and his wife, so it's not up to him to decide whether or not he wants to go to a facility. It's up to you."

So start looking. He needs Assisted Living, but do look for a facility that has a dementia unit.
Here is a link to begin;
http://alzheimers.infopop.cc/e...orum_scope=352104903

Once you find one you like, pop in announced a few times.
If you think having hubby visit before hand, an invitation to lunch or dinner is usually possible. He could also join an activity he likes.

It's your decision. Your health, if you are to continue caring for him, is paramount. And you sound as though you've done all you can!
Anonymous
Posted: Tuesday, January 17, 2012 3:10 PM
Originally posted by: Cathy J. M.

quote:
Originally posted by arteche:
I don't think I could get him to goto a facility, he is some what alert enough to say "I'm not going", I so much would like to do it because as most of you already know, I'm handicapped myself. It's really getting to me, I'm starting to wish that he would get worse so I can get some peace. I do love him but I don't know how much longer I could do this.


Deanna, you're the caregiver and his wife, so it's not up to him to decide whether or not he wants to go to a facility. It's up to you.

When it comes time to take him there, of course you'll need help. Here's what I copied from the Arizona agency for aging website:

"The Area Agency on Aging, Region One is a non-profit organization that advocates, develops and delivers essential services to enhance the quality of life for older adults, persons with disabilities, people with HIV/AIDS, and caregivers.

"Long-term care decisions can be complicated. The Area Agency on Aging can assist you in navigating the long-term care service network to obtain assistance with daily living activities, such as eating, bathing, dressing, and homemaking tasks or assist is advocating on your behalf at a long-term care facility through our Ombudsman Program.

"The Area Agency partners with other organizations in Arizona to form the ADRC: Aging & Disability Resource Center which is designed to assist you with all your long-term care planning needs.

"Information regarding Long-Term care options is available through our 24-hour Senior HELP LINE (602) 264-HELP (4357)."

Deanna, be sure to call that number to start getting help finding a good placement for your husband. It's 602-264-4357. (I'm sorry if I sound bossy -- it's just that it takes time to get all the help you need, and waiting doesn't help.)
Anonymous
Posted: Tuesday, January 17, 2012 3:10 PM
Originally posted by: Mimi S.

Jab, your point on baseline is extremely important. Anyone attempting to diagnose a dementia must take the time to find out something about a person's former life, education, career, etc.

Even something as inaccurate as school Achievement Tests, for those who have kept those old records, would be helpful.
Anonymous
Posted: Tuesday, January 17, 2012 3:10 PM
Originally posted by: DLMifm

quote:
Originally posted by ESaville:
Deanna, call Adult Protective Services or someone from visiting nurses to come in and do an assessment.


Before calling in the APS be sure you have prepared your estate planning and reviewed elder care issues by consulting a elder care attorney. I'd start with a long talk with the Alzheimer org help line.
Anonymous
Posted: Tuesday, January 17, 2012 3:10 PM
Originally posted by: DLMifm

quote:
Originally posted by ESaville:
Hello good people. First, I know I have to remind myself over and over again that my husband is ill and doesn't see any reason to bathe or brush his teeth.


Think of his brain having a bunch of loose connections. When some connect then reasoning may return. When the connection is broken he loses reasoning. It is tough for me and other caregivers to understand it is not a matter of seeing or not seeing when the connection to parts of the mind for reasoning is broken, then there is no possibility of reasoning.

quote:
Originally posted by ESaville:
It took me a very long time to figure this one out, but he doesn't have the reasoning ability anymore.

It is so stressful having to reason for the LO. Your brain takes on double duty. All your expectations, which you developed over time, have vanished. Your mind's system of checks and balances are gonzo and you now have to examine his responses to see if he's back.

quote:
Originally posted by ESaville:
I think his middle name is confabulate. It's really difficult to catch him sometimes. It still blows me away, the depth and sophistication of his political analysis, but his inability to start anything or read a book, or take a telephone message correctly is hard. It's really tricky to remember that he's not normal sometimes, and realize his limits.

Confabulate must the word of them month <grin>.

You have take on the role of mother hen and need to assume his limits don't exist. Your doing the mental work he can't do anymore.


quote:
Originally posted by ESaville:
Deanna, call Adult Protective Services or someone from visiting nurses to come in and do an assessment. They can better see what needs to happen in your home and hopefully facilitate changes.




quote:
Originally posted by ESaville:
Sticks or punishment, not so good, because DH can't learn

A broken brain can't learn. Understanding, patience, and love replace any form of education now.

My son told me I ave a lot of time on my hands. Non-caregivers don't comprehend our 24/7 effort of thinking for the LO who can no longer reason or process thinking.
Anonymous
Posted: Tuesday, January 17, 2012 3:10 PM
Originally posted by: ESaville

Hello good people. First, I know I have to remind myself over and over again that my husband is ill and doesn't see any reason to bathe or brush his teeth. He used to be impeccable,beautiful table manners, a real gentleman. If he had any insight at all, he wouldn't be doing this. It took me a very long time to figure this one out, but he doesn't have the reasoning ability anymore. It's not that he's choosing to be dirty or lazy or passive-aggressive---he just doesn't see the need. In the case of my DH, it's worse, because of the PTSD, he sometimes really over-reacts to having his face washed, etc. because of his POW experiences. I have to work really hard to remind myself that he doesn't do this intentionally.
On the second point, because my husband was trained to be sneaky, I always used to say that he lies like a Persian rug--very eloquent, natural and just as devious as he can be---it took me a long time to figure out how deep the deficits in his reasoning were/are. I think his middle name is confabulate. It's really difficult to catch him sometimes. It still blows me away, the depth and sophistication of his political analysis, but his inability to start anything or read a book, or take a telephone message correctly is hard. It's really tricky to remember that he's not normal sometimes, and realize his limits.
Deanna, call Adult Protective Services or someone from visiting nurses to come in and do an assessment. They can better see what needs to happen in your home and hopefully facilitate changes. But the "carrot" of joining him in the shower works for me. Sticks or punishment, not so good, because DH can't learn new things very well, doesn't read notes, can't take the hint, and in my case, poor guy can't even smell himself! He tries to compensate by spraying whole cans of Oust! in the bathroom after an accident, but he doesn't clean it up!!!
Anonymous
Posted: Tuesday, January 17, 2012 3:10 PM
Originally posted by: arteche

carol and mimi I don't think your sounding off on me I know you're all trying to help....I can't believe I'm afraid to do this, His kids will never talk to me again. As far as they're concerned if only repeats himself and repeats himself. His daughter took care of him while I went to N.Y. for 6 days and this is what she say s and tells her siblings. I know I should start the ball rolling and I have gone and seen "Adult Care Homes and I have picked which I think he would like and it's only $2,000 a month , the place is beautiful have doctors come in a Cna 24hrs a day and so clean. I just don't know how I can do this, he wacthes tv all day gets up gets his snacks he sorta functions except for his hygiene, I'm really so scared,I don't want to break his heart. Can you understand where I'm coming from?, even my own daughter doesn't think he's ready and she is my DR. nurse, I can't even get him to get to the Dr.OMG, I'm so scared....Deanna
Anonymous
Posted: Tuesday, January 17, 2012 3:10 PM
Originally posted by: Mimi S.

Thanks for sharing Kman. I'm the one with the AD and my wishes are to go to an ALF when I can no longer live on my own. My kids don't need to be any more of a 'sandwich' generation than they are. And in an ALF I will get the companionship and, if I've chosen wisely, the expertise, to meet my needs.

If my children lived close to me, were willing and had the time to not only spend with me, but to get trained in the latest trends, than I might have made a different decision.
Anonymous
Posted: Tuesday, January 17, 2012 3:10 PM
Originally posted by: jfkoc

Two questions. When your husband stayed with his daughter did he take a bath? If he bathed would you want him to stay at home for the time being or are there other sompeling issues that meke placement the best choice?
Anonymous
Posted: Tuesday, January 17, 2012 3:10 PM
Originally posted by: k mason

I recently placed my wife in a ALF, the medical professionals at NYU insisted that I was unable to care for my wife alone. She had'nt bathed in over a year, would'nt eat anything other than sandwiches & cookies & soda, like every other caregiver on this board I could list a lot more of my wife's behaviour since this affliction took her over. Within hours of being placed in a ALF, the staff had given her a shower[ it took 3 nurses aides ] got her into an adult diaper & clean clothing, none of which I was able to do alone towards the end. She now eats regular meals 3 times a day, I take her cut up fruit daily, which she eats with some prompting from myself, her complexion has improved. The staff at the ALF take good care of her, I'm posting this to let the people on this board who are at their wits end know there is help out there. I realise caregivers have issues with family members who don't want there loved one institutionalised, ok, tell them to step up & share the load. I don't want my wife in a ALF, nobody wants this for their loved ones, sometimes events conspire against us. To all the caregivers, hang in there & god bless.
Anonymous
Posted: Tuesday, January 17, 2012 3:10 PM
Originally posted by: Mimi S.

Hi Artitech,
That price is incredible. And you have to do what you have to do. You will still be his advocate and care giver.
Anonymous
Posted: Tuesday, January 17, 2012 3:10 PM
Originally posted by: Iris L.

quote:
Originally posted by arteche:
I just don't know how I can do this, he wacthes tv all day gets up gets his snacks he sorta functions except for his hygiene, I'm really so scared ,I don't want to break his heart. Can you understand where I'm coming from?, even my own daughter doesn't think he's ready and she is my DR. nurse, I can't even get him to get to the Dr.OMG, I'm so scared ....Deanna


Deanna, can your DH have any sort of conversation at all? If he can, try to bring up the idea that YOU are sickly, and can't do too much. For him to live in another apartment (aka assisted living) would be a help for YOU. Don't say you're considering placement because he has dementia or because he doesn't bathe. Let him think YOU have the problem. Then if he has any understanding at all, go with that. Tell him you two have discussed this, and have agreed to live separately for a while. (Think of some diplomatic words.) Keep your tone upbeat and encouraging.

Do you let you daughter know how scary this is for you? One of the caregivers said when the patients get to where they can't or won't bathe, it's time to consider placement. Can your daughter consult some of her colleagues? I'm sure they will tell her the same thing.

Iris L.
Anonymous
Posted: Tuesday, January 17, 2012 3:10 PM
Originally posted by: lurk

I understand where you are coming from as far as your hesitations. I agree that you should call someone else to come in and do an assessment, and then you will have substantiation for whatever decision you make.

Like you, no one in my circle understands how hard it is when I am not well myrself. But a professional opinion should go far helping you decide,giving you peace when you do and answering the "know-it-alls".
 
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