I've been posting here for a while, and I'm noticing a pattern. It seems to me that virtually all caregivers (myself included) has/had lots of anxiety and fears about bringing in help or using a daycare program for their LO. We say to ourselves "they're not ready" "they would never accept it", etc. This seems to be a common pattern, and many of us put off doing these things until we are worn down and desperate. Of course, there is a financial component to postponing getting help, but it appears that the emotional aspects are the ones giving us the most trouble.
I thought it might be helpful for the newbies to know that pretty much all of us felt this in the beginning--to the extent that it may even be normal for a caregiver to have those thoughts. However, I think many of us would say that in retrospect, we waited longer to get respite than we should have.
To marilyninMD: Great thoughts. I've sadly put it off as well thinking my Barbara would soon come to the point where she wouldn't notice. In the severe stage this is still not the case so...... I'm taking the leap to save myself.. MY plan is to bring someone in several days a week for 3-4 hours each time. I will stay home with Barbara and the new care person until it become routine and then I'll begin to drift away. I hope this plan will work. Any ideas from others? Your right, speaking for myself, I've waited too long. I feeling this is going to work! Thanks for starting this thread!
marilyn i tend to agree on this as well. i know for a fact i waited too long and also had the excuse DH wouldnt accept outside help. its true he didnt but it didnt last too long and i just said i had to hav someone help with the house upkeep so i could help him and not burnout. i really didnt ask if he agreed after that and found an agency and signed us up. and yes like soolow i stayed around the first few times til i saw he was more comfortable with the person here. the first visits werent too happy ones but i prevailed. now i know i should have started years ealier. if you just take it for face value that they say 'no' it may never happen. this is one of the things that we must do our ourselves. if not we just wear out at a much faster clip and we surely dont want to have to bring in help or daycare on an emergency basis and then have to deal with this. we should try to have something in place before all this could happen. in the long run its easier on us and them. at least this is my experience. and yes we hear it here my spouse 'isnt ready' or 'wont accept someone in the house' or doesnt like daycare'.. likethe driving issues most of us face, its not easy but the result is better in the long run.
I felt the same way, that my 58 year old husband would never go to Daycare or have outside help. I realized that I had to have a break or I was not going to make it. I chose Daycare over outside help, because my husband was so territorial...even with family members. He didn't want anyone touching anything in the house. Did he like it at first NO, however, he only complained when we drove up, but, he was always ready to come home when he saw me. As I think back, I think the main reason I waited too long, was that I felt I could handle him & felt like a failure when I realized I couldn't. I remember the first few days he went I felt like I had just taken my child to kindergarten for the first time.....was a kick in the stomach. Took all my strength not to go get him early, I really didn't know what to do with myself. After about week, I hate to say it, but, I felt like a bird out of a cage....I could run errands, go to lunch, etc. without worrying how I could manage it with him.
My wife made it very clear that she was NOT going to go to day care. When the facility I planned to use was ready to open, just awaiting State license, they asked my wife to come in and help them get started. After that she went willingly, and now seems to enjoy it. At first I joined her for lunch, but after a couple of months I began to feel comfortable leaving her until time to pick her up.
WE used to have day care here but this year that ended..and any day care in our county is a hike of a drive and would be more stressful for me than just keeping him home. I have a guy who washes the windows and yard guys. Now to find some one who could help with a little house cleaning. Waiting lists...the really good ones are all booked..so I have learned to not get my self all twisted up about a house that is not Better Homes and Gardens perfect anymore..there will be time for that later ....I hope.... DH enjoys his pals when they come round but they are few and far between visits..well people have other things to do..
I thought the same thing before I started my husband at day care. I thought that he wasn't far enough along in the disease to need it and/or wouldn't go. My husband's neurologist brought it up to me and when I said he wasn't ready, the doctor sadly looked at me and said "yes, he is". He also said that it would be easier to have him go while he was still socialable. He never fought me on going but while there he was very conscious of the time and when I would be back. He would be waiting for me at the door. It took him a good 6 months or more to become truly comfortable but the day center was very good with him.
Marilyn wrote, "Of course there is a financial component to postponing getting help, but it appears that the emotional aspects are the ones giving us the most trouble. "
I agree about the emotional, but the financial is what stops most people who live on Social Security and do not have extra funds for inside or outside help. Try to imagine what it is like to barely be able to afford food and shelter, never mind extra help. If you have no money, you have no choice but to do it all yourself. Unless you have helpful relatives and or friends. The Medicaid and Medicaid waivers and whatever help is supposed to be available is difficult to obtain, and leaves you with no options. You bring your loved one to the place on their list, whether it is a day care or an ALF or a nursing home. Whether it is good or not. And only if State funds are available for you at the time you request them. (Every State is different, of course.)
So while I understand the emotional aspects of bringing in help or going to Day Care- I wrote a blog about my own hesitation (on home page - To Day Care or Not to Day Care), the financial aspect is the final say, regardless of how burned out or tired you are, or how conflicted you are about sending your spouse.
You are so right, Joan. It's the financial burden that keeps so many of us from having any "me" time or day care or in-home help. We always just seem to be "just out of the qualifications" for everything. I now work about 5 hours a week @ $25 an hour. If I have to have in-home help, that's $18.95 for a min. of 3 hours in one day. I only work an hour or hour and half each time I go in. Wonderful firm to work for - I can come in whenever I can. Right now I can leave DH first thing in the morning for that short period of time. I'm only 3 blocks from work, so it's working out good right now. When I have to have help - I'll just have to do it, I guess.
My LO (Kathryn) made it clear that she did not want to go to a daycare program at all. Sha also didn't want anyone coming in to stay with her. She believed she could take care of herself. Thern came the day I came home from work to fix her lunch and she was bleeding, there was blood every where, it really looked like a battle zone. Scared the you know what out of me. I tald Kathryn after getting her home from the hospital thata I could not go to work with out knowing there she would be ok when I returned and I was going to have someone come in and stay with her. That I needed it rather she did or not. She agreed to it and I contacted the Granny Nannys. They sent a very nice 39 year old young lady naned Darlene and she has become like family. Kathryn now looks forward to her time with Darlene and so do I. Kathryn getts a nice shower every day and Darlene fixes lunch for Kathryn and sits down and has lunch with her. She is the best thing that has happened since this began. I wish I had called them earlier. It cost $14.00 an hours min. of 5 hours. My work now lets me work at hour 4 hours a day. So I am with kathryn 19 hours a day during the week and darlene is with her 5 hours a day Mon-Fri.
I really understand the financial aspects. People keep asking me why I don't have full time help. I get 12 hours a week and it costs me $1000 a month! I am blessed to be able to pay that much but am finding now I am really having to cut back as my savings are dwindling fast. One trick for getting away is that we told my DH that I was going for therapy. I did for a while but used it long after I was finished PT. He knew I dealt with back issues so it always worked. I figured getting time away was therapy so I didn't lie.
I could not do this without the home health aide. I am using all of the funds which our LTC policy will pay,on a monthly basis. I have asked for help 7 days a week for 5 hours each day. Getting someone to work the weekends is not easy. We are in a rural area 12 miles from town. The aide called this morning telling me she was sick today, and that next weekend she will be out of town. She is supposed to work weekends starting in mid November. I feel very lucky to have gotten this coverage 10 years ago. I have already had someone helping now for over a year. I do not see how those of you without any help are coping.
I am blessed to have my daughter living across the street & more blessed that she lets him stay with her on Wednesdays while I run errands, go to doctor appointments etc. I’m only gone for 4 hours at the most because he gets restless if I’m gone too long. I know that everyone here says that the LO will get used to having someone come in the house, but I KNOW that it would not work for us, at least not now. Like I said he gets restless when I’m gone. I don’t like it that he is SO dependent on me, but it is what it is. I can see he is in a decline now & I know that soon enough it’s not going to matter to him if I leave or how long I’m gone. I’m actually going to try the day care route again after the new year.
I'm where you are with this ElaineH. Day care is out for us too, DH will not have anyone in the house ,and will not go anywhere without me. We had a meeting with the Agency. he agreed with them, that I needed time off, coffee time with my friends, but when it come to the day for someone to come in, he wouldn't let them in! Today would have been a good day for day care...because today I don't like him...I love him, but not like him today. Started early this morning..can't find anything ( finger nail cutter) turned the house upside down looking for it, slamming doors punching the wall, threatning to sell the house, all over a nail cutter.... blames youngest son for anything he can't find. When he did finally find it, he said "son returned it"...arghh! Sorry, it's just a bad day...tomorrow is another day, and I'm going out!
I can still leave my dh home alone and he does alright; but, I hate to leave him too often because I know he doesn't like to be home alone. But, he doesn't like coming along when I run errands, either. I have hired a young woman who previously worked with Visiting Angels, so has experience with caregiving. She comes every other week to clean the house. I have instructed her to talk to dh and engage him and make him lunch when I'm not home. The first time she came and made him lunch, they ate and talked for an hour and he/she really enjoyed that . The last time, he said he didn't want anything to eat, so she kept on working. I told her to stop whatever she is doing and make lunch and he will eat it with her IF it is made. Anyway, the plan is for her to build rapport with him and move into more and more caregiving as his needs demand. I sure hope this works out because I am enjoying this little bit of freedom and time to myself without worrying about him being home alone.
Julia..my dh went through the missing items were because someone stoled them...usually said it was son in law who took them. Drove me out of my mind. His neuro prescribed seroquel....he has not had a spell like that in almost a year. I could not handle much more when he first went on the drug.
Ok after reading everyone's comments in this post I am worried. Do any of you work full time? I am worried how all of this will work out for us, I am a teacher and have kids who are 14 and 16, college costs are looming in the future. How does all of this work to pay for help? those of you who care for your LO did you have to stop working or are your retired?
We have many members who are young like you with kids at home. Yes, eventually, they had to factor in the cost of either Day Care or in home help while they were at work.
As with everything, when there isn't enough money to go around, some things in the budget have to be cut back or eliminated. Alzheimer's Disease is a drain on finances -there's no doubt about that.
Check out this story - Laura and Jay were instrumental in getting the 2 year waiting period for social security disability waived for Young Onset Alzheimer patients - http://www.thealzheimerspouse.com/LauraandJayJones.htm
Some organization (AARP. Alz Assn, etc.) should be lobbying the gov't to pay for long-term care for dementia. Right now, unless you qualify for Veteran's Benefits or Medicaid (and you need to be impoverished to qualify for the latter) it is pretty much private pay. In our state, the Alzheimer's Association gets state money for respite, and also the county gives a small stipend ($300/year), but in the overall scheme of things, those funds don't go far.
In the 6 plus years since my husband's dx, I don't remember hearing that anyone was pushing the government to do this. Bottom line, Medicare needs to be revamped to include long-term care.
I am just putting in this next statement as a simple fact, not an invitation to take political sides and start arguing about it- Long term care was included in the health care bill. It was just dropped because it could not be funded. I do not want this to turn into a political debate - I ban those for a reason - they get very contentious.I am not going to say another word about it, because I try to keep my political opinions off of the Internet. If you feel the need to debate government policy, you are welcome to do it on Facebook. Alzspouse on Facebook is a closed group, which I do not run or monitor, so you can get into it over there.
However, if anyone has any information or advice on how to get funding for care, please share it with us. As far as I can see, it is a confusing mess, and differs from state to state. The Council on Aging called me to tell me that they had funds for respite for me, then when I called, another person told me that I didn't qualify.
Thanks Admin for the info. I know it's going to be a long road for us. We have been into see a long term care/estate planning lawyer and he has been VERY helpful with making plans for the future. It seems so out of whack though, we have to put our resources somewhere else ( ie investment properties, certain funds etc) so the money can not be used for long term care, then we can qualify for medicare. It's like you have to learn to way to beat the system and work around it to get it to work for you. That seems like no system. I appreciate everyone's insight. :)
samismom--what you're talking about is Medicaid, not Medicare. And yes, it seems backwards to me too--like you said "learn a way to beat the system" to get it to work for you. It's good that you've seen the lawyer and are starting to make plans--I believe there is a 5-year lookback before qualifying, so plans need to be made early.
Samismom: Don't know if you have done this yet, but you may want to look into social security disability for your dh. You certainly should qualify and with children at home it would be more then what others get with just a husband/wife at home who can't work.
We got SS disability right away. Applied and 2 months later our first check came!!!! :) That has been a huge help. Thankful for the compassionate allowance for Early Onset. And Marilynn you are right, it's Medicaid......I still get those 2 confused. :)
Sanismom22: I work full time (as a college professor) and am hoping to be able to continue to work. My husband can still stay home alone at present, and my 21 year old son is at home, but I do worry about the cost of care eventually. I was looking today at a push button he could wear that would call my cell phone: http://www.amazon.com/Telemergency-Pro-Elite-700E-Wireless-Pendant/dp/B000FPIM9G/ref=cm_cr_pr_product_top And I think about a camera system that would allow me to see him on my computer.
pamsc, I’ve seen cameras connected to home alarm systems advertised on TV. Don’t know if that is what you are looking for, but it could solves 2 problems with one solution.
You can put in a video system that is hooked up to the internet, if you have hi speed connection at home and then it can be view on your Iphone, you can add sensors to the system that tells you a door was opened and send you a picture to your Iphone of what is going on.
Pamsc, did you read the reviews on the website about the button pendant? Not very good reviews. Number 1 for me would be that it has two buttons on the pendant - one to activate the alarm and the other to cancel. DH would remember which button to push- if he remembered to push it at all!
I did read the review of the pendant, and I thought my husband could at least manage it better than his cell phone--at present he says he doesn't need a call system because he usually has his cell phone on him (though he has a very hard time getting it out of its case). Does anyone know of another system that doesn't have a montly fee and will only call a specified phone number? My husband isn't alone enough to need one that calls 911.
I have been looking at everything I can, but really haven't found anything yet that will work for my husband. I just need something that has one button and it would ring my cellphone - if I'm away from the house. He can't use his cellphone anymore. Surely there is something out there???
Vickie, the Alzheimer Store has a phone...a landline one....that has no dial and no pushbuttons. It can be programmed with one number and it automatically dials when the receiver is picked up. I am not sure if that is what you are looking for, but that is the closest thing that I saw.
@Vickie You might contact beclose.com. If you look at their list of sensors they do have a panic button pendant, and they seem to have many options and to be oriented towards sending messages to the caregiver's smartphone.