Today's (10/18/07) Blog is really about the feelings of sadness and frustration that are sometimes so overwhelming that the only solution seems to be to cry. Yes, it was the "driving issue" that prompted the Blog, but I didn't put this under the driving topic, because it could have been any issue. It is the pain and realization that slaps me in the face sometimes out of the blue - this is AD - just because things go well for awhile doesn't mean you can let your guard down. It's going to come back and knock you down.
Hi Joan, I am sorry that you are feeling so low. I think that sometimes people just have to listen to our pain without telling us over and over that we know how this has to be handled. Just listen to me and feel the anguish, the pain and the fear in my words. Don't tell me the things I already know intellectually.
This disease does slap you in the face when you least expect it. You wonder what is behind the door today. Somedays you can be strong and then all of a sudden you have a sinking feeling and it is hard to get through the day. Tears on the brink of falling and you don't allways know why. Depression is constantly with me no matter how much I fight the feelings.
Different stages bring new problems. Now I have to go look for a home for him. We have a good day and I say "I can do this". Then some days you say "I can't do this any more". The guilt is there looming with this decision I am facing. Tomorrow, my daughter and I will look at several homes for Ralph. I have put this off, but cannot do that any more. I pray I will know when the time is right to place him.
My husband has early onset and is in approx stage five. I feel like I've spent the last three years always on the verge of tears. I would choke back tears every time he did something that was ad related. I would hide my crying from my spouse. One of the hardest things for him has been what this disease does to my life. I try to minimize to him how difficult it is. I recently started taking Zoloft and now I hardly cry at all. It is the strangest thing. The things that used to make me cry don't have that affect anymore. In some ways this seems like a good thing but also makes me feel numb. Sometimes I'm not sure which is better. We certainly do have things to cry about. What is better, the pity party or the numbness? I'm not sure if I will continue with the medication or not.
I was thinking about the medication - I have a friend who lets everything roll off of her back - she also takes Zoloft. Your wondering about which is better - the pain and crying or the medication numbness - is something I have thought a lot about. At this time, I think feeling the pain, crying, and working through it is probably best for me. However, the doctor prescribed Xanax for me, which is in such a low dose, it's practically useless, but I do use it to wind down at night so I can sleep.
I did so much crying for 3 years, that I thought I was done. Guess I was wrong.
I get sad unexpectedly, like when a particular song is on the car cd or something. At the moment, I'm sublimating my feelings by having a wild fling with Errol Flynn. It's quite safe, since he's been dead for 50 years. Though sometimes I think it would be best to put all energies into my book project, as even thinking about romance gives me a big hollow achy ouchy feeling. Even with Errol involved.
It's really weird timing that you've put this topic out here today. I thought I was getting along alright lately that I had pushed my emotions back far enough that I couldn't feel them anymore. But I guess not far enough. I was at work yesterday afternoon and had the radio on. A song came on from about 16 years ago (Everything I do, I do it for you). When this song was popular I was doing an internship in Knoxville and it was the summer before Robert and I got engaged. So we spent the summer apart and this song was kind of "our song" that summer.
So, I'm sitting working at my desk and the song comes on and I just start boo-hooing. I don't know where it came from. It was really embarrassing. Fortunately, there weren't many people around at the time.
You just never know when it's gonna sneak up on you.
From the time my husband was diagnosed with MCI at age 58 and then with Alz. a few years later, I could not talk about it without crying. I hated it. I hated being at work and someone would ask how Chuck was doing and I'd break down. At church it was the same thing. With friends and family, the same thing. I was always crying. When I went for my yearly checkup at the doctor's, I started telling her my husband had been diagnosed with Alz. and I started crying. She said, "You need Zoloft!" I didn't really want to take anything for the depression and it took a while for me to finally get the prescription filled...but within three days after starting the med (25 mg/day), I could talk without crying! It was a miracle! It was also very strange to not cry anymore. After a few months, I cut back to one pill every other day and am now down to 1/2 pill every other day. But if I stop taking the pills altogether, I'm back to my crying again. I know exactly what you mean, Hildann, about it being so strange to not cry. Taking a smaller amount of the Zoloft does keep my emotions intact but allows me to cry sometimes. I know that probably sounds weird but I don't really know how to explain it.
Being of the male species, I am not 'allowed' to cry, at least in public. After all, we are supposed to be the strong and manly ones who are looked upon as protectors. But when things happen like yesterday, when we stopped at a 7-11, Kathy stepped out of the car, and for no apparent reason, started bawling her eyes out on the sidewalk. Of course, I comforted her, but I so wanted to cry because she was in such emotional pain and it hurt me so much to see her in this state. I do miss my wife on those occasions when we where as one, and I could cry on her strong shoulder for comfort. We could share our pain and sadness and be there for each other without a second thought. But now, I need to be the strong one who comforts and supports her in this dreaded disease and she does not need to see my weakness. So when I need to release my pain and sadness, I cry when she is sleeping and no one is around. So for those who may be in that pain cycle, go ahead and cry and release it. I can't promise it, but you will probably feel much better...at least for a little while.
I agree. As the head of the household my wife is dependent on me to be the one to support her emotional rollercoaster that AD causes. With kids at home I have to be the one to hold back when they express there emotions and fears about there mom as she slips away from us. Like you Dave I do my crying when all are asleep or no one is around.
crstrob, your experience is so similar to mine. Not crying at all feels so weird. Imagine taking a shower without crying! I think I will keep with the zoloft and reduce the dosage. There are some side affects that are uncomfortable, ie teeth clenching and sweating.
Dave and Tony, as males I'm sure the pressure to be strong is difficult. I have had to become the head of the household in all ways since ad hit. My kids are grown so they do offer me support in whatever ways they can is spite of living long distances away.
Well I was feeling very over whelmed tonight crying and wondering when I would feel NORMAL again and then I came here !!! Thank you all for helping me to feel like I am not alone and that it is ok to feel or not too what ever my decision so to speak....Everyone take care...Larry is 54 today and we are going to lunch...Olive Garden well this is the plan anyhow lolol I have learned that it is perfectly fine to change our minds lololol Renee
I find myself in tears after reading the posts. Somehow just knowing that you are all in the same pain and totally understand the loss. The ongoing grief. The sadness. The frustration. The feeling of resignation. The loneliness.
Expressing all of this doesn't feel productive or positive. It doesn't even feel like a release. It scares me to let my guard down. If I open that door, where will it lead? How will I make it through the day? How will I turn it around to function and not wallow in self pity?
I turn here to this blog often and knowing that you courageous, caring people are here is a solace. Thank you.
It will be 18 YEARS if he lives that long. The driving issue will NEVER end. NEVER. The only thing that is keeping it somewhat under control is medication - for BOTH of us. He's on Risperdal TWICE a day, as well as an antidepressant. I'm on an antidepressant and Xanaax as needed.
I have a friend whose husband couldn't find his way to the bathroom in my house (straight line - 30 feet down the hall on the right), but was STILL complaining about her taking away his driving privileges. (It had been about 2 years).
Yup. Sometimes all you can do is cry. And take medication.
I am finding I really like Captain Morgan with the medication *wink. Joan, one day Sid will forget about driving. Sadly when the disease progressive, he wont remember. *sigh
Wow aren't I just chipper tonight! accck.. sorry! Maybe I need to try to go back to sleep. I think, what is on my mind so much tonight, is just to remember to be thankful for what we have today.
I have a huge fear of when Lynn will be like some of his fellow nursing home residents. The blank stare, the open mouth, lost, completly gone. ACCCCCCCK!!!
I have to take deep breaths and remember.... each and every stage was HARD in its own right.
But without fail, once he reached another stage..I always longed to get back to the last stage!!
The driving issue was huge for Lynn... but Lord what I would give to go back to that time! *sigh
The things he use to do to annoy the hell out of me, example, the lurking and shadowing....... OMG!! How much I miss that now. *sigh
My hard lesson learned : LIVE IN TODAY. Be damn grateful for what I still have.
I guess if there was one thing I could pass on, that would be it.
I wait until night time to cry too. I don't let anyone see or know how very down I feel about all of this. Some days, I have really low ... What I call, 'black hole' days. On those days I can't seem to lift myself or see anything positive. I have a crisis team (part of DH's psychiatric unit) who I can call to chat to. They help a little.
DH think's he's going to get better. That's so awful, because I can't tell him that he's not. I just agree with him and smile...
As we go along here, and read back, it often seems like wow, we've come a long way. I think I've lost my tears but there are the black hole days here too. I appreciate that DH is relatively healthy and can roam around here on the farm. Those are good things and in spite of it all, there are times when I feel like I've lost myself.
I don't know if an antidepressant would help or not but am considering it.
I get to have a few days OFF next week. Its been over 6 months since I've been away longer than 2 or 3 hours. Right now, I have absolutely no idea what to do or where to go but my daughters will be alternating time here for a few entire days.
Funny how all the little interesting places and fun things to do, seem too exhausting right now to actually DO them but it will just be a huge relief to have those days no matter what.
Nikki, I miss the shadowing and the lurking to, shuffling of the feet, playing with something in his hands, I`m hoping he adjusts well in the nh, he loves to talk and they let him wonder and talk all he wants, there was no one but me to talk to here and I used to get mad and say be quiet for awhile, how i wish I never said that, or to tell him to go away, joang i feel for you with the driving thing, hopefully soon he will forget that part, i can`t give any advice just feel for you ((((((((((((((((hug)))))))))))))))))))
Joan the driving issues will go away at a very high cost. you will regain your sanity not having to listen to it like now, but he will have left you and deepened in the affliction of the disease. who knows when that will be- but you may not think now you could ever long for those days once the are gone, like Nikki and Marygail say, we long for everything lost at some point, and for me even the poop patrol will bring back wistful memories. its only a matter of time for us all. Divvi
Nikki said: My hard lesson learned : LIVE IN TODAY. Be damn grateful for what I still have.
I guess if there was one thing I could pass on, that would be it.
Nikki, thanks for the thought. I can't express myself the way you women do so don't make many comments, but I appreciate all you have said. When I get annoyed with my DW (too often) I try to remember what you all are going through and be thankful for what I have.
Marsh, didn't you say you and your wife lived in a retirement home? I looked into them a year or so ago, and was told that if My husband had Alzheimers he would need to live in a separate area. They implied sometimes AD patients made the other residents UNCOMFORTABLE! (watch it LADY!) I was totally floored, and when I heard this from the "second" facility, I was more prepared. Poor little Marketing Lady! IF this is not YOU, Marsh,... who was the gentleman who said he and his wife lived together in a retirement vilage?
Yes, Marsh and his wife do live in a retirement home. I am sure they are all different and have different criteria. My parents live in one in RI, and they have a separate dementia unit. I THINK the spouse with the dementia and the spouse without dementia have to live in separate units, but I'm not sure.
There is an assisted living facility where we go for our support group meetings (they let us use two of their meeting rooms). I know for a fact that spouses live together there when one has dementia.
There are also different levels of retirement homes. Here in Florida, they have it down to a science. Many of them are set up with 3 different buildings. Independent living; assisted living; and nursing home. You get "promoted" from one to the other depending upon your needs.
My husband's former wife (they were divorced in the late 70's) is moving into a nice retirement home near Miramar, Florida that is a Hyatt facility. I didn't realize that Hyatt had retirement homes. It may only be for Independent Living. (DH's son lives in Miramar..) Most of the ones here are managed by companies like Horizon, Sunrise, Hampton, etc. People who only own retirement facilities. For some reason, I believe a company that specializes in "hospitality" would be good at managing retirement facilities.
Nancy, yes, it is me and my wife. We have lived here since Sept. 2007. Everyone in the administration knew the problem before we moved in. There is no problem as long as I take care of her. We sit with other residents for dinner, and most of them know the situation. The nurse checks on us once in a while, and we have an emergency call button in our apartment to call for help from the Assisted Living Section (which we have never needed to use). One thing we do which is a help to me, and my wife seems to enjoy, is Friday afternoon "happy hour", where 8-10 of us get together for drinks (byob) and snack before dinner. There's always a good, free-flowing conversation about various topics. They all know her situation, and it doesn't seem to bother anyone. I don't know what's wrong with the retirement home you looked at. None of the residents here are at all "UNCOMFORTABLE" being around her. Everyone here has some problem, mostly physical, but there are some others with dementia of various levels. The only ones with dementia who have problems are the ones who live alone. My wife is never alone.
EXACTLY, Marsh, and I think the synergism in a place like where you are would be so good for my Sweetheart. He's not into basket weaving or putting puzzles together, - but I think he'd benefit from lively conversation and laughter in the room. We live in our large home and it's impossible to keep him energized by myself. Today he was dellusional for the first time, thinking he was involved in a multi million dollar development in downtown Houston. (He's a former top executive for a Wilmington DE chemical company and diplomat for the State Department under Reagan). His hobby was his work! He does nothing now and I think we could make a retirement home work if we both lived there. I just turned 70. When I began looking, I was 65-66 and it seemed like everyone was much older! Not anymore...:-)
You give me courage. Was your facility a buy in? I have checked into a few of them, but I wouldn't want to tie up that much of our capital in case it didn't work out. They promise to refund your investment when (and if) they resell your unit. My instinct told me that was not a good idea. Will look into a few more.
The problemis that I can't cry. Very rarely do I shed tears. I wish I could. I do take generic zoloft. But htat's not it. I've always been that way. Wish it wasn't so. I know I'd feel better. I know those tears are there for a purpose--tohelp wash out the sadness. I just have this knot in my stomack all the time.
Mawzy, I can't cry either. I have dry eyes and take restatisis and eye drops, although not as often as I should. Your problem may be from the macular degeneration. Take care.
I don't often cry when I'm sad, but there was a day last week that I couldn't quit. Unfortunately, I cry when I'm angry. It makes it difficult to deal with whatever I'm angry about. Anybody else?
((Marsh)) "Nikki said: My hard lesson learned : LIVE IN TODAY. Be damn grateful for what I still have.
I guess if there was one thing I could pass on, that would be it.
Nikki, thanks for the thought. I can't express myself the way you women do so don't make many comments, but I appreciate all you have said. When I get annoyed with my DW (too often) I try to remember what you all are going through and be thankful for what I have. " ........................................
Marsh, I think you do a fantastic job of expressing yourself and offering support to all of us here. We love hearing from you :). It is nice to read about how nice people are treating you and your DW. A comfort to know there are many out there who can look past AD and include them in conversation and activities.
I am thinking back to a few months before I had to place Lynn. We saw a fellow in his army uniform. Lynn stopped him and thanked him for his service. This young man knew within a matter of seconds that Lynn had dementia. He tossed me a look, you know the kind right? The one where they glance at you as if to question, "is he alright". I just nod now, and mouth he has Alzheimer's.
This young man didn't miss a beat. He shook Lynn's hand and asked him if he had served. I know he must have been busy, but he took time out of his life to listen to Lynn's war stories. Joined us for a cup of coffee and made Lynn feel wonderful. When he stood up to leave.... *crying* He saluted Lynn and thanked him for his service. He then!! Saluted me and thanked me for taking care of one of America's heroes. I will never forget that. Never.
I can think of many people who do understand. The ones who you can tell just by their words, their actions, that they truly sympathize and have compassion. Maybe their lives have also been affect by AD or maybe they are Angels here on Earth? All I know for certain is, the people who have a negative effect.. them I have forgotten. But the ones like that young soldier, them I will always remember.
Nikki, thanks for your support, and the story about Lynn and the soldier.
Nancy, our retirement apartment is rental. We can get out with one month notice. It was not always this way. When it started you had to buy the apartment. But if you wanted to get out, or if you died, only the owner of the complex could sell your apartment. One neighbor of ours moved into an apartment (bought). After she died, the complex owners did not do much to sell it. In the meantime, the family had to continue paying the monthly fee, including for meals. After 3 years of this, they just stopped paying the fees. By the time the owners woke up the inn was down to 40% occupancy. At this point they bought up all the apartments, and now have them for rent. Some of the residents here bought their apartment originally, but now are renting. I would be very cautious about getting into a situation where you have to buy in. Be very clear on how you get out, or what the family does in case of death.
OH yes this is how I feel today and my ad is crying and I am trying to be strong.His brother is coming to see him today but he noes he is getting bad.And we talk about it and we say this is really a FFFFDESEISE.He noes that he is going to be going in a home and I will love you always but I cant take care of you know more.We really dont have a big family and thoes willing to take time out for him and me and I am getting really tired and over whelmed.
Nikki, the solder story was amazing! What a fine young man!
Marsh, thank you so much for sharing your experience. Our home is on the market and I have no idea what I'm going to do when (or IF) it sells. I know I need to make a plan...but since we're moving to another city to be closer to family, it's harder to look around. Thanks so much for sharing. Maybe there are some similar (buy in) places in the Austin area with vacancies that can be rented. (Remind me again where you live?)
Nikki, thank you for the story about you, Lynn and the soldier. I'm thankful for servicemen/women like him--or any folk with his empathy and values. Yes, it brought copious tears.
Marsh, I looked up Blue Hill and it is absolutely LOVELY! I'm a student of Architectural History, mostly 18th Century and post Civil War. Your Town Hall and Churches are amazing. Are you at the Parker facility. IF ONLY there was a similar place here, I'd be there in a flash! The water, the area, - it is so pretty. (Just a bit colder than I'm used to...but I love a warm fire in the fireplace!) Thanks for your support. Nancy B.
Marsh, I just Googled Blue Hill - and found this...
"Blue Hill was one of the David Marsh townships granted in 1762 to the veterans of the last war against the French. The first comers to the area were Joseph Wood and John Roundy from Andover, Massachusetts, who built homes on Mill Island at the tidal falls (Blue Hills Falls). Other settlers joined them, and in this neighborhood were the first mill and schoolhouse. The area was first known as North Andover, then as New Port, and in 1789 the town charter established its name as Blue Hill."
Nancy, yes we are at Parker Ridge. At present there are 4 vacant apartments (2 - 2 bedroom, 2-1bedroom). There is a gas fireplace in the main living room. Where are you?
Mary, no, this was not an ancestor of mine. I have no ancestors in this area. Some in Massachusetts and some in Georgia.
Marsh, I'm agree with Nancy! Parker Ridge is beautiful! I can see why you like it there! I couldn't take the winters, but would love the summers! The area is marvelous. Someday (during the summer) a group of us from this site might come up!
Just curious about the different cost. Say I wanted a 2 bedroom 2 bath apartment...and there was one available to rent... what would it cost a month? I would expect the typical charge in our area would begin at $3600 - $4000. for two people which would include a continental style breakfast and (either) Lunch or Dinner .
The most expensive, available, would be $5,710 for 2 people and would include the evening meal. The other available 2 bedroom apt would be $5,080 for 2. The cheapest (least expensive) 2 br, 2 bath is $3,930 for 2. The least expensive 2 br, 1½ bath would be $3,708.
Absolutely! Thank you ... we need to keep an eye on what costs are currently...and you're in a lovely LOVELY place. How'd you like a bunch of us funny "cwazy wimmen" ( voice of Elmer Fudd) living around you...say 4-6 of us.. We'd be trouble, for sure! :-)
I love the small cottage look, which isn't so institutional. The architectural detail of the property is so typical of your area. The developer did a great job...Nancy