I read just about all the posts and one thing I am curious about is when a LO is placed in a NF. It seems like they lose more of what they had before placement. I have thought maybe it's because they can relax and don't have to pretend anymore?
My DH was DX'd 2 years ago next month and still hasn't changed very much. He will be 81 next month and is in good health except for the AZ. It would be nice/helpful if there was a way to figure out how long it would be for the next step down. I know there isn't a way but I feel like we are treading water and I keep watching and waiting. I'm glad I don't have any of the problems so many of you have and I wonder how I will handle them when and if they start. I should probably just relax and wait and see what happens!
Jean, my DH is 86 and was DX'd in 2003. He has not declined very much since then. Mostly just repeating the same questions every 5 minutes. He is slower walking and will walk behind me unless I hold his hand. He gets very frustrated that he can't do the things he used to do around the house, but he does vacumn, load dishwasher, use microwave to fix his lunch; fixes his own cereal for breakfast and plays games on his laptop all afternoon. He does get very confused when out of his routine and we absolutely cannot travel - he has a meltdown everytime - so I gave that up. He also is good health other than the knee problems and AD. Good luck!
Wow, Jean....81 and still hasn't changed much since dx? And in good health. And at home? What a blessing. My husband, John, is 80 and I just had to place him in a NH recently. I haven't noticed any real 'decline' since then YET. He still acts pretty much the same. Every one is so different. I'm not able to visit every day, only twice a week...because of the distance, my responsibilities here and frankly, its about as much as I can take. He DOES think I visit every day. He won't let anyone DO anything for him such as PT, OT or give him a bath and a shave. He is on "comfort care" which means no heroic measures will be taken if becomes very ill....he has a blood disorder and some other health issues. John was diagnosed several years ago, I was in complete denial about it then. Then, found out he'd had his diagnosis two years before I knew. I can look back throughout most of our marriage and figure he may have had symptoms as many as 15 years ago....maybe our entire life together because the ride sure has been wierd.
Jean, yes by all means dont borrow trouble! each travels this road on their own timelines. my DH lasted many yrs on a leveled plateau before dropping another notch onthe scales. he obviously is getting good care under your roof which has helped him stabilize. as far as NH slippage, this is my opinion only, but i think losing that one on one contact on a daily basis and the emotional nurturing they get from the spouse has lots to do with the losses they can experience when they are placed. i know they get good 'care' from staff but its the loving emotional surroundings that i think would be a factor. sometimes there just is no options for placment and we do what we can to ensure they have whats necessary to continue to thrive. divvi
My DH has gone downhill very slowly. he also was diagnosed at around 79, or 80 yrs old. he's 86 now.and still functioning more or less. He's not incontenant, altho he has had a few accidents. he's still pleasant and in very good health. In the 7 yrs since he was dx'd, he has certainly changed, but the changes are for the most part very slow. a doctor said it was one kindness of AZ is that something we think, as caregivers, we'll never be able to deal with, occurs so slowly that when it does occur, it's not such a big deal. (that is not to say it's easy, but it does happen slowly, and you will be surprised at how well you will handle those changes. as you said yourself, just relax and wait and see. My DH an I still travel, not alone, but with other couples with whom we have been friends for a long time. that actually makes it easier, because I then have an extra pair of eyes looking out for him. All the best to you as you join us in this journey.
I placed my DH in a nursing home last Nov. I felt I had no choice, with 3 kids under 12 at home, and DH declining so rapidly. I knew he could get round the clock care there that I couldn't give him at home.
He walked into the NH, could still talk to us somewhat coherently, and could feed himself. Since then, he has become immobile, unable to walk on his own, unable to speak coherently, and has to be fed, and is on pureed food.
I don't blame the NH for this. DH was declining rapidly since last summer. But it's just amazing to me how quickly he has deteriorated. Of course, the Dr's don't believe he has Early Onset AD anymore, but some other form of dementia, possibly demential with lewey bodies. Everyone is different. DH was diagnosed 3 years ago next month. Until about 1 1/2 years ago, he was even driving.
OMG, Kelly, what a horror for you, and for your children. to lose your DH at such a young age to this dread disease, whether EOAD, Lewey doesn't matter. My prayers go out to you and you young children who have had to deal with this at such a point in thier lives.
DH is not incontinent, walks just fine, can make a sandwich, coffee or tea for himself, showers every day ( sometimes twice). Chooses his own clothes which isn't hard because he wears shorts and tank tops most of the time. The only time he needs help is when we go to church on Sundays and then I help him choose a tie. He can't remember names of anyone we know, sports teams or players, tells me the same thing a couple of times or asks the same question more than once but not over and over. He reads the paper or Guideposts and Readers Digest but s--l--o--w--l--y! I think he is starting to have trouble deciding what to eat when we go out so I usually end up suggesting something. I guess after 43 years you get to know what they like. lol. There nothing wrong with his appetite. So I guess we will keep plodding along until something happens and everyone needs to prepare for hysterics from me. VBG.
Why does it feel like I'm so confused today???? I returned moments ago from my visit to the nursing home from a visit to my husband. They have him getting dressed in the morning and into jammies at night. He is showering most every day. He is working (kind of) with his Physical Therapist. Today, I got him to sit up on the side of the bed to eat from his tray instead of lying down. They want to work toward getting him to the dining room to eat. Meanwhile, he is being spent down for Medicaid. My God, he goes up and down like a yo-yo and it takes me along for the ride. Is this NORMAL? Will he really "get well enough" to come home? How will he do THAT? Is that just silly? ALSO....if someone could answer this.....I was reading something on another post (I think something cs said regarding Medicaid) ...... am I allowed to make any money (say, I could find a job) if John is getting his NH bills paid by Medicaid??? What was said led me to think not. If that is the case, I'm to lead a life of 'hand-to-mouth' poverty???? Also, in the rare chance that John gets strong enough for him to come home....not thinking I really want to go through that again....what happens then. I mean, to the Medicade coverage vs Medicare.....and if he goes back into a NH, does the whole thing have to start all over again? I mean, everything's GONE already. Thank God I own all my property and equipment and vehicles.
Things seem to go along okay for a while and then when you think everything is going well, there is a change. Suddenly, it seems, I really see dementia, not just memory issues or lack of judgement. Today, we were watching an Oprah rerun on MRSA, the serious staph infection. He said to me, you should get that. I said, it's an infection, i don't want it. He said ,no I mean get a shot for it, like I do at Duke. He is in a study at Duke, taking BAP or a placebo. I told him that that is for AD. He said, no it isn't. It was a very strange conversation. That and some other strange things have just started this week.
My husband has FTD and did deteriorate when he went into the nursing home but he was deteriorating rapidly at home too. It has just been 2 years since diagnosis and he has gone from relatively normal (except for not being able to speak) to being in a merry walker, incontinent and not feeding himself. The nursing home started him on oral Exelon and I have seen improvement in him. He has been in the facility for 2 months and seems to have leveled off or improved slightly from where he was a month ago. I don't know if it is the medication or just becoming adjusted to his surroundings.
What do you do or say when they show improvement in some ways. As I said, upon my last visit to see John, he was seeming to cooperate with his PT and I got him to sit up to eat a meal. The last time I was there, I was able to (with help) get him into a wheel chair and take him out to the garden. That only lasted about ten minutes and then he insisted on going back to bed. He is clearer in his speach and not combative....they know what his triggers are and don't force anything on him. Just wondering.....what do you do or say when they talk about coming back home? He keeps telling me he'll be able to come home soon, he hopes. Can anyone really see this happening? I'm really concerned, confused.
Jen, you can't take care of him at home....you know that. The reason he "looks" better is that there is a staff taking care of him. They have a job to do and then they go home. Staff is not stuck with 24/7 care. Just be grateful that he is doing some better and you are able to visit with him a bit. When he talks about coming home tell him that the doctor said he needs to stay in the "hospital" and get treatments. Please don't get yourself all caught up in the "what ifs" again.
Thanks for the 'grounding', Sandi*. I've been this way all my life, worrying about what's next, (even more so since AD has arrived) even when it's not shown up yet. I just get so confused when he talks about his being able to come home with me sometime. I tell him that he'd have to be able to be very mobile and do things for himself because I can't take care of him the way he is. He usually exagerates what all he is able to do there, too. I know he's hopeful about being able to come home. He always looks forward to my bringing him a milkshake, too. He knows I always bring him something good like that.
Jen...I read somewhere that worry is the interest you pay on trouble before it comes. Worry is like butting your head against a brick wall and it hurts only you. Oh, and by the way, I'm a good one to talk because I am a worry wart. LOL
I'm trying to 're-tool' my thinking lately. I've become so hesitant when I used to be spontaneous. I hate to ask for help, I've always been so independent and strong, physically.....I've always done the work here myself. I have a good mechanical mind and don't mind hard work, sweat. Sometimes, I've hired help for pay. Trying to learn to pick up the phone when it rings (except when it says "unknown" or is an 800 number on the caller ID). Trying to actually RETURN phone calls. Practicing saying "yes, yes" instead of "no, no" when someone suggests my just putting down my troubles for the day and doing something with them. Trying to extend myself and my time to others (even though it makes me very uncomfortable) ...... because I'm learning that I have to make a whole new life from ashes. And what I'm learning is that to have a friend, I have to BE one ('BE" being a VERB, here). I am practicing coming out of my comfort zone, though no one could EVER call me shy or anti-social! Just very much a 'loner'. I've learned to be this way over many many years of private study in the art! Unfortunately, I never really had a real interest that my partner shared. So, off I went into my own private retreats....my horses, competition there, gardening, my art. That doesn't really require anybody elses' involvement, just cash and time. So, now I'm trying to get over onto the other side of the fence and live life again, bit by bit, one moment at a time. AND you don't know how important this stupid message board has been to me. A life line that I HOPE each one of us will be able to gradually release . At least, I do. Meaning, not having to be so dependent on it for comfort, hope, encouragement and a feeling of being loved and appreciated. I think I just had a vent here. sorry
I couldn't have gotten through my recent tragedy without my friends from this wonderful message board. Their love, generosity and thoughfulness were what kept me afloat.
Oh, My GOD! That comment was in NO WAY a negative remarK!!!! Pllllllllllllllease don't make an issue of THAT! It's like saying "my stupid cat" or that "stupid" horse (which everyone knows I can't live without). So please don't pursue that phrasing. I write just like I speak. I've been told that. It's just that I (and some others at times, privately) wonder how healthy it is to rely so heavily on this form of communication......NO, it is NOT stupid. I SAID how important these threads are to me, you should understand that and not pounce on me like that. You know me better than that (by the gods, I HOPE you all do by now!!) Wow. Ouch. Okay.
I'm an open book. My e-mail is available. I'm not a bickerer. I say what I feel and use my words but never to poke or hurt anyone. I keep asking people to just e-mail me if something I say needs clarifying. I'm a nice person and just want to get along with out having to be so correct all the time. I just wanna be myself here, like everybody. As for deleting, you do know what I meant....especially after the post I just made a few minutes ago. Geez, forget about it.
Now girls, you're both really saying the same thing. The message board is important to us, and I understand too what stunt girl is saying, so important that you sometimes wish it didn't have to be so important.
Reading old threads, I've noticed that a lot of people are active for a while and then become less so, sometimes seemingly disappearing entirely, sometimes just popping in more occasionally or when something special happens. It's too bad when friends fade away but I like to think that somehow they've found something else that can help to fill their lives and help them cope and perhaps need the boards less.
Amen! I'm really trying to make a transition in my own life in many ways that don't even have anything to do with AD. I had only this method of communication for a while when John was home. I had become addicted to it, I think. There are times when I really need to fall into each of your arms here. And, fortunately, this "stupid" (my own poor choice of words (?) that almost is a term of endearment) message board has been here. So, get a grip. I swear, I've never jumped on ANYone here, for ANYthing they've said, even when I've disagreed. And I DO disagree sometimes....then, I try to go to that person's e-mail address to contact them. If it's not listed, then I just keep it to myself and don't take it personally. Really. Lets get on with living.
My husband has only been been in the NH 10 days and I can see a decline already. I wonder if I just didn't see some of it because I was too close to the problem. Sometimes when you step back from a situation you see it in a different light. He walks more slowly with more of a stoop and just doesn't care about some things. He hadn't shaved the last time I was there and when I asked why he told me he didn't know, but it didn't matter. At home he wouldn't eat breakfast until he had shaved. He has been on a fast slide downhill all summer so I don't know if placement added to that or if it is just the disease. What I find strange is that I don't feel a huge relief at not having to take care of him. I am just so sad. If he had died, I wouldn't have to go view the body several times a week.
DelS, I've read that here often, that placement doesn't bring the expected relief. See the thread "WILL IT EVER GET EASIER" To me (with placement hopefully still far far in the future if ever) that seems inexplicable. In my inexperience I would think that being relieved of the day to day responsibility, being able to plan your own day, being able to sleep without interruption, would be an immense relief. It must be the psychological pressure (guilt, maybe, for having placed LO?) that prevents the relief from being felt. So now the question is: how to get rid of the (entirely undeserved) feeling of guilt. I may have this all wrong, I haven't been there yet. Just wondering.
DelS, I do think when we care for our ADLO daily over a period of time, some changes are so gradual we really don't notice them as people outside the household would. It's kind of like when we were raising our children. Relatives who hadn't seem them for awhile would say I can't believe how big XXXX has gotten. It's probably a combination of things. It's a miserable disease. Your last statement is wrenching. "If he had died, I wouldn't have to go view the body several times a week."
DelS....I think what you're saying is pretty much what I've been told to expect as well. When your nose is pressed right up against something, it's hard to make out what's really going on. Now, you've stepped back and can see the changes like folly* said. I think that's right, in my case. My husband has been at the NH for a little longer than yours. Sometimes, he's more alert and cooperative that usual, too, and that surprises me. I'm told a different caregiver can make a big difference. Also that there are so many people around him all the time to keep him stimulated? Whereas at home, it was only me and I wasn't always hanging at his side. Like you, I still don't feel the huge relief now that he isn't here.....I worry a lot. I DO sleep better and can now plan my day as I want. But, like JeanetteB mentiioned, there's still a lot of phsycological pressure to keep my ears perked for that phone call, GUILT that I don't (can't) visit as much as I THINK I'm suppossed to. John's been on that same slide your DH is on this past summer along with some health issues he's developed. I know what you're saying I believe. We're waiting for that feeling of some sort of "closure". Yes, most of my time with John feels like a "viewing". He really isn't there like I want him to be. And there's nothing I can do about it.