Loooong day here-Paul did fine with his cat scan-should get results next week.Don't think it will show any thing that will help with understanding this sudden decline.But we have to rule out other things before just giving in to this AD devil. Had dinner out before coming home,then had to stop 4 times before we got home because he kept wanting to pee-which he did not do until we got home.Then he started wanting to go to the garage or shed to check on the tractor.Not once but over and over.He has not even mentioned the tractor for months.Had a very hard time keeping him in the house-am not sure what I will do as summer comes on.Then he wanted to go to bed-so I put him to bed about 8 times before he finally went to sleep!!! Somedays never end----Have I mentioned lately how I HATE this disease??? Yes I am sure I have---- SORRY!
I don't like not getting sleep. If I were to try to keep Jeff home at this point, it could only be by installing a fence around the entire house. I remember that on one of the programs that's been on in the past several years, documenting cases of people with AD and their caregivers, there was a woman who cared for her mother out in the country. The entire yard was enclosed. It was like a dog park. That could work. I know, it sounds absurd. This is an absurd disease.
I am constantly amazed, at the truth, that only WE understand. IT IS NOT ABOUT HAVING A HARDER ROLL THAN OTHERS< it is just THIS challenge. Tomorrow is my birthday and he will never remember it again. (as he does not now. He was the one people would call because he kept a list of EVERYONES birthdays)
SO many people do remember, and really it is not important, it is just that, HE does not know. He has really had a couple of bad days too Betty, just when I thought he was smoothed out a bit. Today he could not husk the coconuts, it was too hard for him, after 10 years of doing it. This will mean a big change in my little business.
waaa can I waaaaaaaaaaa and whinnnnnneeee with you???
Happy Birthday early Coco. Hope you make alot of money on your birthday. My dh had his birthday when we were on the cruise....guess what I got him...a watch...and, guess what else...he can't even tell time, but he loves his new watch.
Coco HAPPY BIRTHDAY from me to you with lots of love and caring!!! Sorry Dado is not doing well either guess we can just whine and complain together.Hope you have a good market day tomorrow(,well it is already Sat.here)so I guess I should say today. Anyway I will be thinking of you .
Jeff likes to wear his watch too. He can't read it even though we switched to digital 5 years ago, and usually some errant button has been pushed and it's doing its stopwatch thing, but he likes it.
My dh is not ready for day care but can't be left alone more than 2 hours. Can't really tell time, use a phone. I can see things are getting worse. Have had two days of paranoia and delusions. If it comes again tomorrow, I will try to get a mild med from dr. to see if that calms him down. How I hate the thought of starting meds. He refused to take Aricept, Excelon, and Namenda because he couldn't tolerate side effects. Didn't help anyway.
I have never felt so trapped in all my life. My independence has vanished also.
Shirely...we all know that trapped feeling and it isn't fun. But, like most things, this too shall pass. Isn't it strange how we go from one problem to the next and keep returning to back to some of the original problems only a little worse upon the return? Just when you think you are through one phase it returns. My dh has been in basically a slow decline for the past year. Except for an occasional "bad spell" he is very docile and easy to care for (easy being relative) to how much worse I know it can get. It is like waiting for the other shoe to drop. Every day brings different feelings for me. One day I want him to get worse and get this over with...the next day I say to myself I can handle this for a long time and at least I still have him with me Not sure I really remember what normal is any more.
I do not know your circumstances well enough..but here are my thoughts. We all struggle with giving up care for even a small amount of time. But you need to be aware that your health is needed to continue this journey. Be it day care or admission to a memory care unit, there is no time like the present to look, even try, options that will help both of you continue. I believe, and others do as well, we continue to love our spouse but we also carry a burden that only grows heavier with time. And we wait to long to find help. You may find a respit helps both of you.
shirley--I hate to say this, but if the paranoia and delusions continue, in addition to starting meds--maybe you need to rethink leaving your husband alone at all. A lot can happen in 2 hours when you are away. Perhaps daycare is a viable alternative--every caregiver thinks their LO isn't ready, but usually they are (sometime we're the ones who aren't ready, emotionally). I remember that trapped feeling and it was hard to bear.
shirley, marilyninMD is correct. I didn't think my husband was ready for day care, but the neurologist told me in no uncertain terms that yes he was. He turned out to be correct and I was wrong. If you have one near you and can afford it (or get funding), it can't hurt to try. I never called it day care, it's always been called "the center". I don't know how I would handle things if I had no time at all.
shirley, I will echo what the others have said, if you have a day care in your area give it a try. Unfortunately for my DH wouldn’t go. He went to 4 sessions & flat out told the staff he just wanted to go home. I can’t leave him alone anymore. He can’t use the phone, make himself anything to eat, doesn’t know which room is which. The only time I get to myself is when he can stay with our daughter for a few hours or a friend from church will come & take him to lunch. I am looking into getting someone to come into the house for a few hours, but not sure how that will work out either. I know how you feel. ((HUGS)) to you.
I am in the process of searching out day care or "centers". I know it is a losing battle as he will never go anywhere without me.
ElaineH, I have a sinking feeling that dh would do the same things as your dh.
Today he wasn't too bad at all; probably building himself up to a humungous blowup.
Yesterday being my birthday, our girls and families took us out for dinner. DH was on his best behavior . As long as he didn't say anything you wouldn't have known there was anything wrong. I told him repeatedly yesterday that it was my birthday and kids were coming. When the help in the restaurant serenaded me with "Happy Birthday", he leaned over and kissed me. I was really touched. Of course, I don't know what he was thinking.
Thanks for the hugs and advice. We are never prepared for life's detours.
Tonight on Dateline they talked about the electrical implants to Alz patients to restore memory. If a patient forgets something, they just wait a moment or two and it comes back. Battery pack is installed like a defibrillator in upper chest. Sounds too good to be true, doesn't it?
Happy Birthday Shirley! My h has refused to take aricept and namenda also. Does take exalon. Won't know if it helps unless he stops. Dr. even asked if I thought it was helping. I'm like, what should I compare it to!
Shirley and Elaine--if daycare absolutely will not work, you have no choice but to bring help into your home. You have to get some time away from your spouses, for your own well-being. Regardless of which path you choose, your spouse may resist. There have been many old posts on how LO's were told they were volunteering at daycare or that aides in the home were cleaning people. You need to launch into the "therapeutic fibbing" mode and develop a story that will be acceptable to your LO. I know it's not easy, but the results are worth it!
marilyninMD, I appreciate the suggestion, I really do, but right now bringing someone into the house isn’t an option. When he was at daycare the staff & I tried to convince him that he was a helper, but he wasn’t having any of that. I also know that if I brought anyone in the house & tried to leave he wouldn’t have any of that either. He is actually paranoid of people he doesn’t know. Whenever we go into a store he picks out the first lady we pass & he says, “She hates me!” I tell him that we don’t even know her & he gives me that look like I don’t know what I am talking about. There is no reason to bring someone into the house if he is going to be paranoid that they are going to hurt him or be obnoxious to them. Anyway, right now he stays with our daughter a few hours a week so I can at least get the shopping done & we have a friend at church who takes him to lunch & keeps him busy for a few hours a few times a month, so I do have a few hours of respite. I will definitely look into in-home care when I know he is ready for that, but not right now
Like the "therapeutic fibbling" :) Shirley and Elaine....... it's trail and error. With working full time hubby can't be alone anymore (all the reason to numerous to mention). It has been a road of ups and downs in finding someone. First for me agency's way to expensive for the long haul and long haul is what I need. After medication changes, some work and some didn't. I found this wonderful lady but Hubby's attitude was still a problem, "I don't need her or I don't want her" "why is she in my house" . Told him it wasn't a choice anymore I needed her, I couldn't be leaving work every 5 minutes and I couldn't be home all day. So I adjusted his med's feeling that Anxiety and fear was driving his resistance, his comfort was with me alone and that's all he wanted. Well that couldn't happen so I started giving him the 1/2 an ativan every morning with his meds. It removed his anxiety and now he and "wonderful lady" have bonded. I still go home for lunch every day but they are finding there path together. I did explain he had no option unless he wanted to go to Daycare and that was a BIG no way.........some days are always better than others and no two days are the same. But as I put it we are in the "Pharmacetical phase" of this disease and compliance through drugs are ugly and unfair to him..... but necessary for me.
I really envy those of you who can bring people into the home and/or daycare. I can do neither. We don't qualify for any help whatsoever, yet I cannot afford to pay for any of it. Even if I figured out a way to do it, DH won't hear of it either. Fortunately, I can stilll leave him alone for a couple of hours first thing in the mornings. I go into work two/three mornings a week during this time. That's my respite!
What's funny is I wish I could stay home ......6am to 10pm is a long day in two different worlds. If I could afford it....i'd be home. Respite .....a dream coming in May (4 days with BFF) ...........that will make a year since the last respite.
Why are the drugs ugly and unfair to him? Don't you feel that HE feels better for not being anxious, Terry? As an old friend of mine used to say, "whatever gets you through the night..."
Yes, absolutely better for him to get through his day. I think because the drugs begins a quality of his life being removed, entering into the fog and side effects. He know his life is changing all for the worse. He articulates his displeasure that his life is becoming what he never wanted it to be, losing his comprehension and wearing depends. Last night when he awoke at 1:30am, all wet and confused he yelled for me, I came running and he look at me and ask "why do I have to live this way, why do I have to live" .....well my response was all we have to do at this moment is get you into dry cloths ......and I put him back to bed. I guess because I feel so sorry for him that I have to give him pills but I can't give him back his mind.
Terry54, I know that I am very blessed because I can stay home. We have 2 Social Security checks & a pension (thank God for the Federal Government!) but we racked up some debt before we could collect SS, so we by no means have any extra money. Like Vickie, we really can’t afford daycare or in home help, I was hoping that if either worked out I could go back to work a few days a week to get caught up, but that ain’t happening. I’m actually glad that I can stay home. And like I said I do get some time to myself so I don’t go completely crazy!
Hate to throw politics around, Wouldn't you just love to have one of these cut Medicare, Medicaid, cut pensions politicians spend a week as a caregiver and see what the real world is all about.
Terry54--it would tear my heart apart to hear my husband say the words you quoted. My experience with psych drugs for my husband: it has not put him into a fog and the one side effect that occurred was quickly resolved by adding--yes--another drug. I see using meds on dementia patients as having the potential to improve their quality of life rather than diminishing it. When the Seroquel he was on stopped working last year, he was miserable most of the time. Once a new drug regimen was in place, he became content (I hope it lasts--so far, so good). The key element in all this, I believe, is having a doctor who is expert in using the available medications.
Bak: I'm sorry. Gives new meaning to a "new day". Sometimes the same here.
CoCo: Happy B.Day. My wife hasn't remembered my birthday in years. One of the biggest sadnesses for me. All holidays, speacial days are no longer. Turned 55 and 60 no big deal. Maybee that's just as well.
Nelsons: I'd just like "them" to give us a tax break for keeping our loved ones off the street and out of everyone's hair. Let's see . . . I think a few thousand dollars less in tax right would be a big deal. Oh well.
Marilyn, I hold your words and guidance in the highest regard. Your words have given me the comfort level to use these drugs. My reference to the fog is the disease progression. It is very difficult since he is so aware of his own decline .....this is what breaks my heart. When the fog happens it's all about reacting to what is happening and is there anything I can be done to reduce this situation. I know some day I will face more difficult issues (placement ?), all I want to do is the best for him I can, give him the quality and dignity I can because I know he would have done the same for me if the situation were reverse. Living in two worlds (regular at work and Alz at home) I just want to shake people and say do you know how lucky you are to have health. Thanks Marilyn
I believe it is human nature to take things like good health for granted, until we are experiencing the other side of the coin. I was lucky that my husband had limited self-awareness from the start. I was just rereading a book called Alzheimer's Early Stages by Daniel Kuhn that I had bought way back when, and the part on self-awareness explained that the level the patient has depends on which areas of the brain have been damaged. Clearly, your poor husband's brain is still functioning well in the area that controls his awareness of the disease. As time goes on, this will inevitably change and it will become easier for both of you. I wish you strength in getting through the diffcult period before that happens.
Your statement about quality and dignity is exactly what I say when people compliment me on Steve's care--he would have done the same for me.