I seem to do fine for maybe a week of constantly having to stuff who I am in favor of keeping the peace. I try very hard not to rattle his cage - who gives a sh## about mine?? Anyway, can you pros tell me what are my options for getting away? I know nothing about Day Care, Respite Care, etc. I'd almost be willing to cut off my arm to go away for a weekend to the ocean alone. I just want to be alone and not have to be worrying about him for a change.
Is your husband a vet? If so, check with the VA regarding day care facilities. The VA will help with the cost. My husband attends a VA contracted day care 3 days a week and I don't know what I would do without it. The VA also has respite facilities, but I haven't used that and don't know alot about it. Also, you can contact your Dept. of Aging or something like that. I think different states have different names. I'm in Illinois.
Mothert I will go with you. we can meet in the middle and ESCAPE BIG TIME. Maybe we can get a few others to go with us and where ever we go, get a discount group rate..... Hope you find a solution as I am looking for one also. Good luck and hang in there.
Look up in-home care in your area (sometimes the Alzheimer's Association can furnish you with names of reputable people) and call them and get someone to come for a four hour morning or afternoon (or through lunch so you can go out to lunch with a friend) to take some time off and see how it goes...then work yourself up to a full day, before trying a weekend. A weekend could only be done today if a neighbor or relative or close friend would stay at your house for the weekend so that you can get away. The Alzheimer's patient might panic if your absence was too long at first. That's why they shadow us....they need to be able to know we're there. But, like a toddler, they must be trained to get used to the fact that you must have time away from them. Find help today!!!
You must have respite care to get through the rough times. I highly recommend it!!!
Call your local county aging agency. They are the doorway to good local care. This is a federal program run locally by each county, which is why they aren't always called the Area Agency for Aging. They will come to see you and do an assessment. There is no cost. If they can help you financially, they will, but even if they can't do that they have the names of all of the good day care programs and in-home health agencies, and every other program out there and they will share that with you. They could not help me with costs, but they were wonderful help anyway.
Mothert, I feel the same way that you do. Where am I, I have needs too but I am suppose to put me on hold and just take care of him! I called the Alzheimer's association and I got a long list of telephone numbers to call in my area because they asked me where I lived and then they just gave me the numbers in my area. I am very happy to have them to call, they are on my speed dial.
Starling thanks for the information. I didn't know about this program. I will be calling tomorrow. But mothert by no means does this mean we can't go on our trip. Bev and andy are you ready???????? I am sure we can take a whole bus full...... somehow.......let's get to packing......you know we are bad off when just the thought of something like this relaxes my mind. I know it won't happen but it sure does help to know we are all in the same rickety, leaking boat....... I love all of you for such peace and hope. thanks
mammie, I am more than ready! I think a shopping trip before I pack is in order! Sure is fun to dream. Won't be online for awhile, going to our GA home for a few weeks. I'll check in when I get back and see how you all are getting along!
mammie, I'm ready! I still have my summer clothes out and my bathing suit, so all I have to do is put them in the luggage. Or, maybe, I'll just put them in a plastic bag from the grocery store, like "Raymond" did in one of his shows on TV! That'll be faster....
totally understand, bought two about three years ago and they have yet to get wet....... but they sure are pretty when I get them out and look at them........
I'd love to come along tooo!! The idea of sitting and watching the waves is and has been a saving grace for me as well. Thinking of smelling the ocean air and watching the gulls..just sitting there with confidence that DH is OK and safe..will be such a delicious delightttt. Even tho he's been at the ALF for almost 2 months..its not YET feeling comfortable to be away more than one day. I'm afraid thats more about me than about him. Too many years of such high anxiety and worry probably. ANYWAY..it would be such a joy to just sit a spell with yalll..Don't need to get IN the water..Just to watch the waves is plenty good..
OK, once upon a time, I had a bright orange bikini! Now where did it put it. I'll meet you girls on the beach and I'll bring the sippy cups to hide our "drinks" Don't want to get caught drinking in public, we can get into enough trouble without that!
I live right smack dab in the middle of the US but can travel any way from here. i'll meet ya'all wherever/whenever for some respite. and a couple of adult beverages! Just tell me when & where!
I'm just gonna tag along an watch the fun( something thats been lacking in my life for a couple years now)maybe I can sweet talk Bama into a date on Nov6th,I think I know where she'd like to be that night,Geaux Tigahs
this is turning into a well needed trip. The plans are awsome. Sure is good to have something to look forward to even if it is day dreaming........ can't wait for the drinks to kick in....
Our grown kids and their little ones were up last weekend - daughter took dad's car home with her (sad time for us). Here I am longing for a time alone with no responsibility and they come up for the day. I really do love them all, but daughter and husband absolutely do not understand that a visit from them does not constitute relaxation or a break for me. I never sat down from the moment they came through the door. That's so typical, too; the kids show up with their kids and they sit around and relax and leave everything else to me. I'm sure none of you encounter this problem with your grown kids?? -:) Daughter still works full time and for the past 3 years I have taken care of the granddaughter for probably 4 weeks each summer and during almost every other long school vacation during the year. This is becoming more and more difficult with my dh's condition. She is still planning on me being the babysitter for the foreseeable future. I and our two daughters are going to see a geriatric counselor next week and I'm hoping that this visit will open her eyes to many of the facts of this disease and what it will mean for family dynamics as we go forward. Kids, no matter how old they get, it's always All About Them!
IT IS TIME FOR A LETTER FROM DEAR ABBEY SO HERE IS MY EFFORT AS A SUBSTITUTE.
Dear It's Always About Them,
It is time to shove aside the hope and change belief that the daughter and her husband will see the light about the demands you are facing. Giving them the benefit of the doubt that they are not self centered all about me people who do not understand what you are facing on a daily basis, it is time for a heart to heart direct chat with them. Explain to them in frank terms that while things were good and Grandpa was healthy ( or at least at a better level than he is now) it was always fun to visit with them and the granddaughter and to have her during the summer and during holiday time. However, things are now different and here is what you face each day. Then list what you have to do from setting out and seeing meds taken, to the housework, to doctor appointments, drug store pickup,grocery shopping, and then list all the tasks Grandpa used to do that now fall to you. Make it clear that the partner in crime ( just a little humor there) you always had to share these tasks with no longer can do this. Then need to understand that he now needs the same supervision that their daughter needs and surely they can identify with that requirement for attention and planning.
Explain to them how much you do enjoy seeing them but now the texture of the visits must change and what you will need from here on out. First, the visits must be scheduled..no surprise visits. Secondly, when they come you now need them to help, not just sit around relaxing and being waited upon. If there are some Mr Fixit jobs, sil and G'Pa can see to them, and Daughter and granddaughter will have to help around the house..it won't hurt for them to help with meals, set the table, do the dishes just like her teen years and a little light housekeeping might be welcome too. You don't say how old the granddaughter is but surely if not too little she can help with some little things which will help her learn and make her feel important and needed too. Then together perhaps you can plan a Sunday picnic you can all enjoy before they go back home If this displeases them, if it is relaxation they need from their busy schedules, they need to contact Holiday Inn for reservations.
They need to understand you need down time too and that when they come to visit under the present conditions, even if you are sitting down with them the work is not getting done, yeah it will be there tomorrow but that is the problem it is always there tomorrow and it grates on your last raw Irish ( in my case it would be Irish) nerve to the point you have no down time and you need it as much as they do if not more. It is important to be nice when you explain your situtation as you will need more help as time goes along. Perhaps they are just not seeing this so you need to get the Windex out and clear the view. If they are in denial about what is happening, then the shades need to be raised.
If your daughter and sil are not schooled up on what this disease is, have some literature there for them to read..start with the 36 HOUR DAY and have them read this. You don't want to burn bridges and have a rift but you do need to have understanding and assistance. I hope some of my thoughts are helpful.
Signed Abbey's Sub
On a personal note, I have had the same situation, DH has family that will come for a day or two and then they sit around and visit with him which is wonderful. But I either don't get things done or am prevented from doing what I had planned for my down time. I am now making it crystal clear that if they are going to come for more than a short visit ( and by that I mean a few hours) then if they are not prepared to HELP around here ( and that does not mean take DH to lunch so I can get work done) they need to see to other plans. I am past pussyfooting with people. Folks who have not been here for a long time and do come for a couple days must notify ME not him well ahead of time. He won't tell me or he will get me involved in something unbeknown to me and then there is distress..and I won't go there anymore. I have stopped being a doormat for the pleasures of others. I am not going to be a B& B anymore either. ( we live half way between LA and SF so we have in the past been a good stop over place....funny how some of these same people never came to visit when we lived in the desert of AZ). We just have to learn to speak up nicely and put people and family as well on notice about what WE need now that things are no longer the happy go lucky kind of days anymore. They don't mean harm, they are just unconscious.
Me too! Me too! I wanna go. There are no adult day cares here or in closest towns. Pregnant granddaughter did come w/her 1 yr old when I asked, but last time they came, baby got the remote, and apparently grandpa explained in rough voice that he was never to touch it. Hard on pg granddaughter to watch son and grandpa. Friday another granddaughter said she'd come for about 3 hrs. I appreciate the help, but they're a busy family; so can't always count on them. Therefore, I'm ready for a few days away:)
Thank you.. and be my guest to quote, plagerphrase to hearts content.
People I think don't mean to be unkind but they really are asleep at the wheel. This included friends who are free with advice on how to relate or " put your foot down with an AD patient and "make" them do.....".
Just because someone is taking care of a 90something who has a little memory lapse here and there does not mean they automatically know how to contend with someone with AD who is losing other skills at the same time. To forget whose birthday is on what day is one thing but to start to forget how to go to the bathroom, work the remote, etc while forgetting the birthdays is something else.
Family and friends for that matter too, think they are coming to brighten your day when in fact you wish they would just take over for a spell so you can get away or hide or whatever you want to do for a break..they just don't get it. If, after explaining nicely, the situation and nothing changes then the pussyfooting dance has to stop and we have to learn to be blunt..polite but blunt.
I guess I need to get away. I just put Ayr Saline Nasal Mist in my eyes! Bottles were side-by-side and I picked up the wrong one. It didn't burn or anything - and I immediately washed my eyes out with plain water. I hope it won't hurt my eyes!
I love all visits, they do brighten my day but most people stay too long. Do they think it's impolite to leave after an hour? DH gets so tired. I have been wondering how to tell people that a visit should not last more than 1 1/2 hours. My friend tells me "You'll just have to come right out and tell them." Since I can't bring myself to tell people to leave once they are here (and I'm so glad they've come), I'm going to try to mention it when the visit is planned -- there is usually a phone call or email to arrange it.
I get mad. I thought none of my DW's friends or family cared about anything but themselves. The truth is that I'm angry that this has happened to us and I'm angry that I have to go down this hard road where I'm going to lose everything. We never had children and I'm all alone.
The problem is that when I succumb to the anger like I did today, then both of us lose big time. My poor wife would be afraid to do anything else wrong except she can't remember from one minute to the next. Today was all about cleaning up after her and then getting really frustrated about the next weird thing. We've dropped a lot in the last month or so.
It isn't that I haven't had breaks. After a year without them I've had three weekends away among friends who take over and three glorious days at a cottage while the SIL watched her. Just days later I could rip out my own kidneys in frustration.
It's us. Either we learn how to cope and manage what we can or every day piles the stress on much harder. If we don't tell the family what's what before we build up a volcano - we're not going to explain anything to them - we're going to blow. It's isn't really their fault that our reality changed so hard - their's didn't and they don't understand until we really tell them. And most importantly until we take it in ourselves.
I recognize my poor behavior as bitterness about what my life is becoming. I get everything done but I haven't been able to muster that spiritual level where I accept that what my wife needs along with care is that I'm sympathetic to her plight - not mostly frustrated that I hate what my life has become and how much worse it's going to get.
The truth is we need the sympathetic care as much as our spouse. We're the only one's that fully get what is being lost and how much this is negatively affecting our lives. Instead it falls mostly on our shoulders and we seem to disappear as a person. Remember feeling vitality?
It isn't that I'm not alive or that I can't do some of the things I used to love doing when life was normal. It's watching myself steadily disappear while the demands, the weirdness, and the strain just keep getting harder.
I hope you can sit your children down and really tell them what this is. Maybe that will help you to feel less stress and it's reasonable that the children are going to see it all happen anyways. The grandchildren were probably great to have when life was less hard - but we have to try and be forthright in what we can and can't do and taking them again now may not be reasonable.
I've poured my heart out to several people much to their shock. I got a lot of support. The problem is that I have to start accepting the reality of this inside better and that's very difficult. I'm not alone in that.
May we all find our way through.
JeanetteB,
Perhaps tell them how important their visits are to both of you while telling them how long it's best to stay.
Wolf K sounds all to familiar,when an old grade school friend recently asked me what do I do for fun I couldn't answer,the old things I used to like to do now seem so far away,without my wife to share nothing seems worth attempting,I have tried a few things but always there in the back of my mind is the situation we're all facing,hopeless,an we all are facing it alone,you can tell friends,children,family an until they live it 24/7 they havn't the faintest idea,if I had a month an the where with all to do anything I wanted I doubt I would do anything just knowing whats down the road
Yes, WolfK, I think that the fear that we're losing who we are is very scary and you feel like if you give up trying to still be YOU that you'll never get YOU back.
Good idea, Wolf, thanks. It is important for people to know their help/visits are appreciated.
Ol Don, I know the feeling of not knowing what to do with yourself. DH has four days a week of day care now, and I have barely accomplished anything. Not QUITE true, I have been out and about and did a lot of gardening this summer. But things that used to be my recreation, like bicycling, movies, museums -- no fun on my own and I haven't been gung ho enough to get someone to share. Part of it is a guilty feeling that I'm enjoying myself while he's at day care where (I have a sneaky feeling although he can't tell me) he doesn't really want to be.
Thanks, Marilyn, I couldn't find anything on the web about it hurting the eye and they both had some of the same ingredients. No harm done I guess! Just felt so silly, as this would be something DH would do, if I don't watch him!
Our daughters and I are visiting with a Geriatric Care Manager next week and I have emailed the counselor a list of questions for her to explain to all of us. I also asked her to explain how demanding my life has become and how little help I'll be able to offer my daughters in the future, etc. I think they will come away with their eyes opened much wider. I will miss the grandchildren very much. If you don't spend any time with them, they grow up and don't know you and don't care about you. I really enjoy being an important part of their lives.
With cell phones, Facebook, e-mail and visits, our grandchildren stay in contact. I see them on Skype - video TV on the computer and they show me special projects; they text me "how are you doing?" and post to Facebook....I AM a part of their lives, just in a different way...I am here and they know it....I can't physically hug them, but they know that they are loved.
AD doesn't last forever.....
We ALL need to get away.....do it as often as you can find someone to stay with your spouse....it is a big part of your well being.... you are doing it for both of you.
Because my spouse and I are at the end of the road, I'm big on trying to give others my advice......I don't mean to be preachy....I've been where you are and am just trying to help....
MotherT....please don't give up your family.....you can learn to work around this disease. It is not easy, but a lot of us kept our own lives and took care of our spouse. You are important and you have a life, too. Don't let this disease take two people. Those grandkids are our reward for not killing their parents...LOL! Don't miss out....
I should hope you will be in a position to continue to see your daughters and the grandkids. You need that bonding. But they MUST understand what you face in order to be of any help and support in whatever way you need it. I hope the geriatric advisor will be able to impress upon then that which you have not been able to get them to see.
I really feel for you because it is NOT easy to educate our families on what our lives have become especially if they cannot admit to themselves that this nightmare will not go away when the sun comes up in the morning..the nightmare goes on until the very sad end. And then we are still left go grapple with many issues.
I think, depending upon how receptive your daughters are, how much they understand after this meeting, you may still find that you will need to reinforce what you need. Sending the list ahead was a great idea. May I suggest that in the days before you all gather that you put pen to paper with any other questions you may come up with as well as things you may wish to ensure are covered in the event something does not get covered. There is always something later we wish we addressed at a lawyers office or a doctors office..
All of us will be with you in spirit and I hope you can feel our strength supporting you. We all care so much about one another on this thread..it is amazing and I am so grateful for it.
mothert, I feel the same way about the grandchildren. It feels as though they're drifting away; I miss them coming here often. I know they're growing older and have school and friends, but, I think this is one of the most difficult situations to deal with because of this disease. I miss the babysitting with the younger ones, at the same time, I find that my husband gets excited when the younger ones don't do things the way he tells them to do. He sometimes yells at them, a new thing with him; he used to be so fun-loving, nothing they did bothered him. With the older ones, it's easier, but they tend to get a little impatient with him because he talks so much and expects them to listen to every word. All in all, though, things have been easier since he's been on the higher dose of Seroquel.