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Joined: 1/14/2015
Posts: 40463
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Originally posted by: lurk
Gentlemen (and Ladies) who are farther along the path, are you still around? I know that you probably feel like a group of mature adults at a party listening to young marrieds chattering about having babies, chasing toddlers, getting kids off to school. Are you just watching us fondly--or impatiently? Are you having more severe challenges that require your attention?
I, for one, miss you when you don't post. I guess your issues aren't constantly changing, but we still need to know what is happening with you so that we know what is to come and so that we have mentors for handling it.
Are you hanging in there? If you are just sad and want to tell us so without having us comment, we could probably do that if you really put it to us bluntly.  Or if you can weigh in on our challenges that are so far removed from yours, I know that we all appreciate your wisdom. Well, anyway, I hang on to your every word.
But most of all, where are you?
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Originally posted by: Mimi S.
Starling, I agree.
Have you read Jan's Story by Barry Petersen? He writes at length about his need to socialize while his wife was still living but non communicative.
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Originally posted by: Sunshine36
Good morning lurk - I just started to post again after 3 years of not reading any messages or posting. I really don't know where you are in this situation. There are so many ups and downs daily that its hard to post and not sound like your complaining. My DH was diagnosed 12 years ago, in the beginning it was just that he lost his sense of direction, he couldn't find places where he was not familiar. He kept his job and was fine driving to and from work, I drove all other places. Little by little things changed sometimes so suttle that you didn't realize it for a few weeks. Habits change, personality changes, you may see anger where you never saw it befor, they can't remember anything from the past few hours, least of all what you are taling about at the time. I find the best thing to do is just let it be and in a few minutes change the subject to something you know he remembers. Every one is different and they react differently to each situation.
Don't be affraid to ask for help or accept a frind or neighbors offers to help. It's hard to admit you cannot do this alone, but you can't. I've had a neighbor that has been willing to stay with my DH when I need to go out for awhile, the problem has been I don't take advantage of her willingness to stay with him often enough, now I find myself sick and totally exhausted.
Take care and pray for the wisdom and courage you need to get through each day.
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Originally posted by: Starling
My husband is really far along. He is in a nursing home and under the care of hospice. I'm at the stage where I'm beginning to put my life back together.
That is a totally different set of problems. I keep noticing things I let slide, or things I didn't do and how long it has been. A friend suggested that we go to a movie next week. I haven't seen a movie in a theater for FOUR YEARS.
The last vacation was before the diagnosis. I missed the travel window early on, and then it closed.
I live in a new construction area and do not know three quarters of my neighbors.
I've got a lot of the issues widows have: living alone for the first time in my life, needing to reorganize my social life, not just from couples to singles but totally because there has been no social life for years and years.
And yes, talking to people who have these same issues would be useful.
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Originally posted by: LarryD
Dear Lurk,
I enjoy how you get us to come out of our comfort zone and put something forth for the forum to consider. Well, here is one that I have not seen come up but if it is happening to me. it must be happening to at least one other out there. I am losing, or have lost most of, my understanding of spoken communication. I lost some of the higher frequencies of my hearing from my work experience but this is different. It is not unusual for hard of hearing folks to lose the ability to understand certain like sounding consonants, but I have been alone without understandable language around me that my ability to concentrate and truly listen is eroding. I got in the bad habit of using the subtitles for movies or TV programs to bring out the speech from the loud music and sound effects. More and more I got used to it plus I started reading mysteries and westerns in the evenings because I enjoyed the quiet after putting Deane to bed. So now, I have become so used to understanding by reading that my brain has become lazy and even though I hear my daughter when she comes over and starts to talk with me, I have to often tell her to "say that again" and really focus and concentrate on what she is saying. Plus there is always so much going on in my mind that I am just not used to listening so I think I am losing the ability to capture verbal communication as easily as I used to. My wife talks to me during the day; mostly she talks at me, but most of it doesn't make sense so I just say yeah, or uh huh, or something to let her know I at least know she is there. She tries hard to tell me things but mostly I can't understand her.
So, there you have it; another thing to watch out for for the caregivers. Oh, I also communicate with past friends by E-mail; another written versus verbal communication of this present age. At least I have resisted texting instead of the few phone conversations I still have. Even on the phone I have to say,"say that again". So get out among people and socialize. It's just as important if not more so for the caregiver as it is for the one with AD.
LarryD
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Originally posted by: lurk
Starling, that is exactly what I meant. Thank you for being so open. We know these things are to come, and I think we can travel the road better if we can see it from your perspective, e.g., the things you let slide. Perhaps I will decide to get help sooner so as not to let things slide.
I have had a dream of driving cross country, and I thought that it might happen this month, but it won't be happening. And with that, the vacation window probably has closed.
I have worried about living alone. I love being alone, but when night comes, I become nervous. I have so many widow friends, and I admire them, but I wonder how long it takes to not be nervous at night. We live in a good neighborhood; that doesn't seem to make me feel better. Also, if someone broke in right now, I would be the one to have to deal with it, but still it gives me comfort to have a guy in my bed with me. Weird? 
Mimi, dear Mimi, no I haven't read Jan's Story, but it sounds as though I need to. I'll put it on my To Do list. I am most interested in your story, of course, because of your diagnosis, but have not had time to go back and read through it. It takes a lot of time to get educated when there is so much to learn, and we still have to handle the ADLs each day. Well,obviously, I will have LOTS of TIME!
Sunshine, you have had such a long time of it, and yet you can scatter sunshine (re. your "New Week" post. I can't even imagine hanging in there after 12 years. No wonder you are sick and exhausted.
You do realize, don't you, that even if you sound like you are complaining, you are marking the road for someone who is following behind. When I get time, I will review your posts. You will find my introduction on the introduction site--about page 11, I think. DH is in late state five/beginning stage six and doing marvellously except for a few quirks. Thank you for your insight and willingness to share.
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Originally posted by: lurk
quote: Originally posted by Mimi S.:
Starling, I agree.
Have you read Jan's Story by Barry Petersen? He writes at length about his need to socialize while his wife was still living but non communicative.
Sorry, Mimi, you were writing to Starling. I eavesdropped. 
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Originally posted by: lurk
Starling, do you have a favorite bakery treat or other treat? How about starting with your closest neighbor that you don't know, take a little treat, introduce yourself and let them know why you haven't been out lately. Take lots of notes about them.
I used to bake, but have gotten lazy, so take orange rolls from a special bakery, or chocolate cake from a restaurant. It doesn't have to be a whole batch or a whole cake. I say, "We couldn't eat the whole thing; I thought I would share."
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Originally posted by: care4ever
Dear Lurk,
Regarding hearing.... maybe you just need to make an appointment with an audiologist for a hearing test? My DH wears two hearing aids & without them he is almost deaf. Medicare does pay for test but not the hearing aids.
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Originally posted by: lurk
LarryD, oh, I think I have bitten off more than I can chew in getting you to bring out this new issue. It is boggling my mind and will take time to absorb. It sounds like a real problem (as opposed to just being hard of hearing)--like "lazy ear", right? It only makes sense, but who would even have a clue as to what had been happening day after day.
As you say, it surely must have happened to others, and something must be written on the subject somewhere. And those on the forum will possibly have some comments. It will be interesting to research, and then to apply what we learn.
LarryD, have you shared your thoughts with your daughter? She, having been around you more than anyone else, might have some opinions. Could you talk it over with her?
And, of course, you have already hit upon the answer. It's not too late to get out and socialize, as well as, look for computer games, etc., for that specific purpose. Maybe there is a hearing loss site like ours that would have suggestions and exercises. Thank you for bringing it to our attention.
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Originally posted by: LarryD
I don't think it is lazy ear, I think it is lazy me. I bought a $360 computer program designed to get the brain to increase understanding by mental/physical exercises. You can do some of the same things by tackling new skills that you did not possess before, like a new language or learning to play an instrument you haven't done before. But it takes a couple of hours a day of concentrated work with the program. I have decided I will just keep saying, "would you repeat that please". It's a combination of time available, fatigue, my age, and just not caring enough to work at it.
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Originally posted by: LarryD
care4ever,
It wasn't Lurk that wrote the above, it was me, LarryD. I have been tested and in fact bought $5000 worth of the latest hearing aid technology, but if you don't use it, you lose it. Hearing can be enhanced by amplification of the missing frequencies, but the ability to understand is a function of what the brain does with the frequencies, or sounds if you prefer. The brain is what makes sense out of the sounds. I have read in some of the books I read trying to understand AD that when a person loses their sight due to an eye problem, the brain will adapt and use that part which was being used to interpret what the eyes were seeing into adding to the ability to hear more acutely. We think they just learn to listen better, and in a sense they do but it is due to the miraculous ability of the brain we have been given. I have no doubt that I can't hear as well as when I was young but my problem is at least increased by the fact that for years now, I have withdrawn into the role of home bound caregiver who exists either in silence or among the gibberish (forgive me for calling it that) of my mate who no longer speaks a language anyone understands.
As a side note, I took my $5000 worth of of hearing aides back when the instructions for their use included the directions to always face the person speaking and learn to read lips for maximum results. I know they help some and perhaps I'm in denial but volume is not my problem; silence is.
LarryD
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Originally posted by: Melitta
Starling~I wish you lived next to me!
I wonder if there are people in your neighborhood that are wishing for the same thing? I bet there are so many who would love to chat and walk with you!
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Originally posted by: IBUMPY
LURK,
Well tell you something how interesting. My wife has had AD for what seems for ever.The first sign came in 1996.Flash forward to 2003 and she loss her job because she could no longer do her job.She retired inJune of that year and I retired the end of July on my birthday. My retirement was planned My goal was to retire when I was 55 but worked one more year.I left one job to become a caregiver. We travel for 3 years back and forth to Vt as that is where I'm from. and we were planning on going to Texas for the winter of 2006 when health problem with one of the grandchildern came up.We stayed and missed out on Texas but at Christmas in 2005 I was watching the news local and the State Troopers were talking how rewarding it was to help the people on the gulf after Katrina.While we were at church I had asked or pastor if he cold help us with the planning of the trip.His reply was come by after new years and we will come up with a plan.We spent the entire month of March 2006 in Mississippi.Helping people rebuid.How rewardingthis was we returned to Ky.the first of April.Cleanned the camper and reloaded it and headed to Vt the first of May.We spent the summer back and forth between Ky and Vt.Come Oct we returned just at the end of peak foliage time.Cleaned the camper up and returned back to Mississippi.At the beginning of March we returned to Ky. And thats when the fun stopped. Jan had gone so far into AD that she just wanted to stay in her bathroom and talk to her self in the mirror.This was the hardest part for me we stopped sleeping together as she would toss and turn talk and scream and kick and just hog the bed and it was a KING.One night I got up and removed the mirror as Jan was fighting with herself and was losing to her self.Thru the three years it became harder and harder to care for her.I had a lady coming in so I could have a break she came 3 days a week for 5 hours each day.This helped but didn't seem to be enough. I had all I could stand and burnout seemed to be at hand.After a lot of thinking I put Jan in a nursing home for 18 days. And I made time for me I went to Vt,Ms, and several other places.When I went to get Jan from the nursing home she was drugged out of her mind and they said it was for her own protection.I could not believe how many drugs they had used on her.At the time she weighed 92 lbs.It took 4 people to change her and to bathy her.She has never been back to the nursing home. I ended up taking her to the Dr. for a strees fractor from her fighting the people in nursing home. That day was the start of the new Jan.
The new Jan has been a joy she is in late stage 6 and at times knocking on the door of 7. We have returned to Ms.4 time in the last year and a half.The people down there can not believe that she is doing this good.We have been able to travel to see grandchildren at times and we do enjoy that. We attend church every Sunday and Jan has a nice following of ladies who spoil her to no end.We go to walmart at least 2 times a week just to see the kids and to shop.Jan also has several clerks and customer who talk with her and how nice it is to see people accept her for who she is.I have laid the plan that if people know what makes her different they understand it better.One thing she still likes is driving down the road with the music loud and the top down and going fast.She laugh and smile the biggest smile.
As far as me I have tried to take a break from caregiving about every three or four months.It helps me recharge and advoid burnout.I have gone to Vt to see family 3 times and once for the death of my mom.I have 2 people who take care of Jan at home and they both are wonderful. I still get out 3 days a week and that also helps.My feeling are if it cost me 2000 a month thats better than 7000 for a NH. I hope this helps someone
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Originally posted by: Dorinne
Tom, good for you, thats what I hope to do with my husband, to just keep going on with life with him.
I do not have him on any meds at this time, I have heard horror stories about SOME drugs for dementia.
I think he is in stage 5+ and changing this past week. We see the neuro on Wednsday but have been seeing other Dr.s that have mentioned dementia.
I am thrilled that Jan is doing better without being drugged.
I had to smile when picturing her in the car with loud music and the top down smiling. What a great time she must have been having.
Your post has helped me. Thank you
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Originally posted by: LarryD
Way to go Tom. High five to you.
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Originally posted by: Claudia R
Hi to Lurk and the rest of my fellow travelers,
I don't know that I'm any farther along in the journey than you are, Lurk, but I am reaping a few rewards from lots of hard work in the last few years. My husband's AD is relentless and fast-moving, at stage 5 slipping into stage 6.
The hard work involved building my village. I finally have a health care team that will answer the questions and keep me on track with the technical aspects of caregiving. This includes a caring young physician for me who listens to my challenges and monitors my stress levels. I know the best daycare and respite providers in my area and have narrowed down the support groups to the one with the best facilitator (some of them just let the meeting spiral downward and I leave in worse shape than when I came in). I have learned that leaving for a few days is a lot of work, but worth it. My husband doesn't remember I was gone, and the money I spend is not as much as a full-time ALF would be.
I have traveled with hubby a bit, but he seems to get digestive disturbances when we go, even though I try to keep our diet pretty consistent. Caregiving in a motel is really ugly. He loves getting away, but it is too much work for me and too risky.
One of the best parts of my village has been dog therapy. I never knew he was that fond of dogs, but they bring out spontaneous joy that I thought had completely evaporated. We seek out dogs everywhere. Yesterday we went to a Howl-o-ween event sponsored by a police K-9 group. My favorite part was a dog costume parade/contest. We can share a laugh--the best therapy ever.
My trials center around keeping up with the changing condition of hubby. Recently we had a trip to the ER for raging diarrhea/incontinence. I make fewer plans because I'm not sure what level of care he will need on any given day. But as he has deteriorated, he has become more compliant and accepting of help. Hurray for small favors!
Keeping my own social network going is another major challenge. I appreciate all of you, even when I just read and don't post. I know I am not alone while I'm alone, if you know what I mean. I attend an exercise class and I just bought tickets to a lecture series. I plan to invite someone different each time. Evening is a challenge. It will be good to have a date when I know I will go out.
I know I'm getting older, but the energy seems to go quickly. Plus, as all of you, I have to do everything to keep house and car going.
Another challenge is constantly dealing with disappointment. People you think you can count on flake out and complete strangers bale you out. It makes no sense. Just like this disease. Letting go of things making sense may be the hardest challenge of all.
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Originally posted by: lurk
quote: Originally posted by LarryD:
I don't think it is lazy ear, I think it is lazy me. I bought a $360 computer program designed to get the brain to increase understanding by mental/physical exercises. You can do some of the same things by tackling new skills that you did not possess before, like a new language or learning to play an instrument you haven't done before. But it takes a couple of hours a day of concentrated work with the program. I have decided I will just keep saying, "would you repeat that please". It's a combination of time available, fatigue, my age, and just not caring enough to work at it.
I'm sorry. I understand. I took a Spanish class once a week for a couple of years, but have not accomplished much and am not doing it now. Same reasons. Fatigue and our ages. In fact, I think fatigue makes all the difference (unless it's just my normal manic/depressive self Some days I think I can take on the world, and other days, I don't care about anything.)
Having said that, LarryD, I think hearing loss is harder on others than on you, or at least as hard. I have learned to "project and enunciate" (my theater daughter's instructions) to so many friends, to my son-in-law, and to my husband who has perfect hearing, but that other problem, AD.
You didn't answer my question about what your daughter thinks. She will be your ally when your caregiving role is over, and you must face the real world again. Am I being too harsh? What about YOU, Larry dear?
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Originally posted by: Dorinne
Way to go Larry, I'm pretty independent myself in our life and decision making. I listen to others and use what I think will help, but the final decision is what I feel is right. I research everything.
Specialists, yes, I listen to them but through the years with my husbands medical problems there have been many errors and questionable procedures made by spcialists that are his problems today.
PHD is the PRACTICE of medicine some better than others as in everyday life.
Sorry if I offend anyone, I'm just a 71 yr old Grandma (laymen).
Caregiver for my husband, I am trying my best
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Originally posted by: care4ever
[QUOTE]Originally posted by LarryD:
care4ever,
It wasn't Lurk that wrote the above, it was me, LarryD. I have been tested and in fact bought $5000 worth of the latest hearing aid technology, but if you don't use it, you lose it. Hearing can be enhanced by amplification of the missing frequencies, but the ability to understand is a function of what the brain does with the frequencies, or sounds if you prefer. The brain is what makes sense out of the sounds. I have read in some of the books I read trying to understand AD that when a person loses their sight due to an eye problem, the brain will adapt and use that part which was being used to interpret what the eyes were seeing into adding to the ability to hear more acutely. We think they just learn to listen better, and in a sense they do but it is due to the miraculous ability of the brain we have been given. I have no doubt that I can't hear as well as when I was young but my problem is at least increased by the fact that for years now, I have withdrawn into the role of home bound caregiver who exists either in silence or among the gibberish (forgive me for calling it that) of my mate who no longer speaks a language anyone understands.
As a side note, I took my $5000 worth of of hearing aides back when the instructions for their use included the directions to always face the person speaking and learn to read lips for maximum results. I know they help some and perhaps I'm in denial but volume is not my problem; silence is.
Larry D
Sorry about your hearing problems. My hearing loss was due to being an information & emergency operator in PA. for nine years. I am fortunate that a hearing aid does help.
My DH is 78 and wears one behind the ear HA and one that fits inside the ear. He also worked for 28yrs. in a noisy research lab doing engine testing. each engine was enclosed in an individual room so the noise wasn't constant. Most of the work was done by computer with instruments on the outside. Looked like a space lab environment. He was diagnosed with early dementia this September. He is an USMC vet.
care4ever
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Originally posted by: LarryD
Dear Lurk,
This is really getting into some deeper stuff that maybe some think about but maybe not. You ask about me. I think, as caregivers, we all adapt in our own way to fit to some extent with how we were before. If you were a sociable person who liked to be around people, you will probably try to continue to seek outlets that involve people as time and occasion allows. I have never been a very sociable person so I don't particularly miss it. I used to like having someone who would listen to me but I was not really interested in listening to them. Self centered, I suppose but I am still that way. Whatever friends we had as a couple probably tolerated me to be with Deane. It's funny how we get matched up with someone who completes what is lacking in us. So if my having to have occasional spoken messages repeated to get my attention bothers others, so be it. It doesn't bother me. If I could change it without too much trouble or work by me, then I would do it but right now I have adapted to catching the gist of a conversation without understanding each word. As you can see, I am a very introspective person and my wife, bless her heart, put up with it all these years. I don't think I would have the grace if it were the other way around. As I have written before, this is my opportunity to give something back. I don't look at it as an interlude in my life that will be over soon and then I can get back to doing things that I really want to do. If I use up all of me doing what needs to be done for her then that's okay, I've had my turn. I did not come to this frame of mind quickly or easily but that's what it has become.
Therefore, the way this disease progresses, I am taking care of myself on a day to day basis but not making any independent long range plans to be alone again. Deane is probably progressing slowly but she has no stress and still eats good and her systems still work, apart from walking and speech. If she doesn't get sick or develop some other serious problems, she looks good to go for a long time.
I expect my story is not unique and everyone copes the best they can. Do I get bored, you bet; but I got bored before in the middle of a crowd. Do I wish it were different, sure but I'm not in charge of this life. I happen to believe the Lord made each of us unique and He says He orders our steps so my job, as I see it, is to walk those steps and look for the best in them. Nuff said.....
By the way, bless her heart, our daughter, among our three children, is the most just like me.
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Originally posted by: lurk
LarryD, bless YOU. Thanks for explaining.
Claudia, I want to answer your post, but need a block of time to do you justice. Gotta make lunch now. I appreciate your post as I think we are in about the same place.
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Originally posted by: lurk
Well, Tom Bumps, first of all I can't believe your story. It's been going on for so long, and you have run the gamut--from the sublime to the ridiculous. Such lows; such highs.
I have to ask how your physical health is. I was telling someone that the vacation window is over for us, and here you are telling me that you take your AD wife to Mississippi and WORK FOR OTHERS. Why am I so scared? You are an inspiration, and I will be interested in all you have to contribute. I thank you so much for taking the time to tell us your long story.
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Originally posted by: IBUMPY
Hi Lurk,
Yes I myself find my story unbelieveable.At time I wonder why its so easy. How many caregivers can say that.Sometimes its as hard as flint and we all know how hard that is. The travel is fun and is planned well in advance on the day we are going to leave.When the day comes when we get up that is when I decide if we can go or no. If we are going to Ms. I will not make reservation until we are half way down into Alabama. We have never had to turn around and have alway gone on the day I have planned.
As far as me I as healthy as a 63 yo should be. Yes my BP is controled with drugs and I'm 25 lbs overweight. But it seems to be the caregiver curse. I make sure to take time for me by having breaks every 3 or 4 months. Plus I have a great lady who comes in three days a week for 5 hours each day.While she's here she cleans and does the wash and all that good stuff. I hope this answer your question. May God bless you both and if there is anything I can do for you just ask and I will try
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Originally posted by: Starling
One of my small successes is that I'm finally getting over the word finding problems I had because I hadn't spoken to anyone on a regular basis for years and years. I'd gotten out of the habit of conversation.
And you all are right that I ought to be taking the first steps in meeting people like myself. I'm aware of it. I'm just not ready to do that. I do make sure that I do something every week where I'll spend time with at least one person. I've started physical therapy to deal with lost physical functions - hard to exercise if you can't leave the house for a couple of years. I'm becoming aware of what needs to be done.
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Originally posted by: IBUMPY
Hi LarryD,
Thanks for all the knowledge that you have sent my way. I looked up Germantown,Tn today and thought it would be fun to get together but its a long drive from here.I think it would be fun to see each other and compare note on our journey. Have a good week. And God bless you both.
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Originally posted by: IBUMPY
Hi Dorinne,
I'm sorry but I must have miss lead you on the Drugs that Jan is on. Jan takes 3 Aricept 10mg,Namenda 10mg,and Seroquel 100mg.She has taken these for seven years. somewhere along the way she started cheeking the pills and spitting them out after I left the room. This went on for about a month and I talked with the dr.and he wanted her back on them. We started her back on them at the 5mg.each for a week than increased it to 10mg. the next week. There was a big improvement in her. The Seroquel has been increased over the years I think she has been on the 100mg. for a couple years.
I know people have pro and con about using these drugs but they will not cure AD but they sure slow the fall to the bottom. That is why I keep her on them .As far along as she is I'm affraid to take her off of them in fear that she will hit bottom.
I hope this helps and my God bless you both.
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Originally posted by: LarryD
IBUMPY,
We used to travel at the drop of a hat but our wings have been clipped. It would be good to get together and talk with others who are on this journey. Who knows what lies ahead.......
Bless you both as well. This is something we can all do for each other, pray for one another,
LarryD
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Originally posted by: lurk
Roger, I'm glad to see that you are still around and being wise, i.e., your response on the immediate annuity thread. But how are you and your loved ones? Did you do the Memory Walk? Is the weather still good for golfing?
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Originally posted by: Roger G. care partner
Hi Lurk,
All are doing pretty much the same here. My step-daughter comes by a lot and is always ready to assist me in whatever needs to be done.
She and I took Phyllis on the Memory Walk. It was OK. Phyllis got a little tired but that is to be expected. We just wheeled her around in the chair.
Starting to get a little chilly for me to play golf but we will still get some good days.
Instead of golf once a week will probably start going to the Gun Club and do some target shooting in the indoor range. have several friends that enjoy it also.
Hope all is as well as it can be with you.
And yes, I am still around........just not as vocal.......for now anyway.....lol
Phyllis and Roger
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