For the past 3-4 years my wife has been able to attend the lunch program at the local senior center. At first she was solo and then for the last 6-9 months with my 80 y/o parents supervising and assisting. She is 61 completely ambulatory and continent. I am 53 and have to work. When her loss of vocabulary and cognition meant she could no longer keep up, we moved her to a day care program last week.
I had hoped that the transition from one senior program to a different “senior program” would be easy it was not! It seemed good at first but she got kicked out after one week, her problem is incessant crying. She has two basic problems. First is that I am her guiding light and whenever I am out of her sight she panics. I can deal with this while we are at home and the frequent phone calls while I am at work have gotten us through to this point.
The other problem is that she is a 61 year old in a room full of 70-80 year olds. She is not interested in chair exercises or word games. She wants more physical activity. She used to work setting up the tables and chairs at the senior center but the day care folks want her to sit quietly and be served.
Home care might be good but it take a while to set up.
I am not against a pharmacologic solution. She has a prescription for Ativan 0.5 mg for sundowning (which has worked well) but it isn’t enough to get through day care. A higher does or a longer acting drug? I donno. A suggestion was made for Lexapro. The day said they would work with us and want an MD eval for med adjustment, which we have this afternoon.
My biggest emergency is that without a wifeysitter I have to stay home from work today. I gotta get her into something so I can get to work. Any other suggestions?
so many have used the seroquel in lower doses to start. some it works others not. but if she is incessantly crying she should probably have some med intervention to get her thru. i wonder why the daycare doesnt give her something more specific to do if she is that mobile and able. ? maybe talk to the director to see if they can use her to help with the more elderly? the dr would be a best bet to get you on something. i know you said you are having evaluations today. good luck.
I agree with Divvi, why wont the day care offer her more stimulation and activities? I thought that was the whole point of sending them? We had excellent results with the Seroquel. Best of luck at your appt today and in finding the right medicine cocktail for your dear wife.
My first question is - Is it an Alzheimer specific Day Care or is it a regular senior day care? Senior Day Care personnel are not thoroughly trained in dealing with Alzheimer clients. If it IS an Alzheimer specific Day Care, then they should be making accommodations for activities for her. At the Day Care Sid attends, if someone is higher functioning, the staff will take them on as a "volunteer worker" and give them jobs to do to help with the other clients.
My husband attended 3 different daycare programs over a period of 4 years. There were various issues because a participant with EOAD doesn't "fit the mold" in many cases--and being more mobile and physically fit makes a big difference. Two of the daycare programs did make accommodations for Steve, and allowed him to push other participants in wheelchairs, assist during field trips, retrive people's walkers for them, etc. At one center, he ate lunch with a group of little old ladies and he considered himself their caregiver!
One of the daycare programs "dismissed" him and asked for his meds to be ramped up before they would readmit him. I didn't agree with that and found another center where the staff was more accommodating; he attended another year successfully with no change in medication. Increasing your wife's meds may be part of the solution, but I firmly believe that wanting her "to sit quietly and be served" is the wrong approach. As the others have said, the daycare staff should play to the strengths of the participants and help her utilize the skills she still has. Things like setting up tables and chairs, sweeping the floor, etc., could be meaningful activities for her and preserve her sense of self-worth, which we all need.
This day care is a large grouping (30 clients?) but the have a lot of staff too. They have a 'social model' and a 'medical model'. The difference begin that they cannot give meds to the social people. They DO have other AD folks and seemingly they are familiar with AD. But are they really? Is ANYBODY who has not lived it? After long talks it seems their concern (problem?) is that her crying requires 1:1 time. Time they cant/wont spend. . . .
We surveyed local day cares at Christmas time and this one looked good. They may not be the best for her (as Marilyn suggested) The big problem is that I will need to go back to work.
We went to the MD and he said we could up her Ativan and he added Celexa. (but it will take a week to start) So the plan is to get her through another week there (maybe it will workout?) and then go back and re survey the other day cares knowing what her problems are right now. But I think they DO need more productive physical activities . . . but who knew it would be so important? Sigh . . . Jim
H is 52 and I have not seen that many- okay- only one day care site and that was enough to convince me he is better off at home than there.
They told me the average age of those enrolled was in the mid 70's up to.....
The activities, music, etc, is of course, geared to the population. I can't fault that. But, for him there is no place to go: (not that he would currently go).
You did not ask this, but I am going to say it anyway. I gave up my work. I never believed it would turn out like this. I am 52 and would love to work again but likely will not have that chance. I gave up my work too early. H paces because of AD. I don't really physically pace but mentally do because of frustration.
You gave no indication that you are contemplating giving up your work so excuse me but I am saying, even if that is a remote possibility, don't end up like me!
This is a shot in the dark, Jim, I used to volunteer in a daycare and nursing homes. I was assigned a client that was having difficulty adjusting. This gave one on one to the client and freed the staff to continue the program for the others. Is it possible that they may have volunteers or you could get a volunteer from friends or family or Aging Agency. I am sure once the meds are adjusted and more time passes she will do better. The clients I assisted seemed to need one on one for a few weeks and then I would be assigned another newby. Just seems too soon to throw the baby out with the bathwater!! Praying things work out for you.
Jim, When the day came that I could no longer leave Kathryn home alone I called around and talked to several pasces that provide home care and was told about one called Granny Nannies. They are in several states but not all. I called them and at first they talk me they didn't know how long how long it would take to get someone that would work the hours I needed then to. They called back with in three days and had someone and started the in home care the following Monday. It has worked out grant. I had cconcerns such as:
1. I wanted some one about Kathryn's age. The young lady we got is 23 years younger than Kathryn and I almost told them no thank you. They said she was very good and ask me to give her a try. I agreed but told them the first time she didn't perform like I wanted she would be out of there. All I can say about her is it is single best thing I have done for Kathryn. She loves kathryn. She sings to her and dances with her. Takes care of her every personal need and goes with me when I need to shop for kathryn. She isa like family now.
2. I wanted someone that would care about her as much as I did and just be there to collect a check. This was probably unreasonable of me to think that was even possible but while ahe may not have the love for Kathryn I do I think she has a different kind of love for her.
3. I wanted someone honest. What can I say I feel she is honest.
This has worked out great for us and was set up in one week total. I think back and don't know how I was aboe to get alone without Darlene for the years before she came on board. I would suggest to anyone to start some in house care as early as you think you need it and to wait if you can afford it. There are many companies out there just make sure they cover their folks with insurance and all other legal requirements employeers are required for employees. You do not want to assume any of these type of libilities.
This service cost me $14.00 an hour and they require 5 hours any day she works but can work in number of days. Darlene wors 5 hours a day Monday thru Friday for me so I can work 4 hours a day at home and 4 hours a day at work. She will also work a little longer if I give her advanced notice so she can prepare.
She went in today and had only one crying spell. They gave an Ativan, called me and I talked with her on the phone, she was calmmed down in about 5-10 minutes. Was it me? or a miracle from a molecule? Who knows. I am very lucky that my 80y/o parents are able pick her up and watch her from 2-6PM when I get home. :-)
I have what was(?) the perfect job - a 4/10 work schedule, every weekend is a 3 day. (4 days if there is a holiday . . . ) This is both good & bad as it means I have to cover only 4 work days but I am outta the house for 12 hours. I could possibly move to a 5/8 schedule but I am not sure how that would help with her. (More days=less hours or less days=more hours)
Yes, JimB I do see that home care is next, but I suspect it wil take a long time to get those kinks & trials worked out. Especially the hours thing - See:above I would also like her to be with others as much as possible.
Abby - Rest assured I DO NOT plan to quit. I have 25 years in a government job that has a real pension. :-) (too valuable to give up today!) We just finished building a house and if I quit/retired now I would lose EVERYTHING. She has SSDI and a small pension, but Even if 50% of my current salary has to go to care costs I am still earning time for MY pension when she is gone.
One other thing that might be an issue related to day care. My wife was a WORKER. She started working as a Nurses Aide at age 15. RN school then 8-12 shifts for the rest of her life. I also love work. 23 years of marriage and neither of us ever recreated(!)
Professional work has always been our recreation. We never went to movies or took vacations. We have traveled, but always realted to work. (I lectured extensively) So NOW to tell Rita that she needs to sit and watch a movie or do a word puzzle . . . ? It aint gonna happen.
When she was at the Senior Center she was a 'volunteer'. She set up the tables & chairs every day. (at age 60 she was stronger than the older men) She set out all the salt & pepper.
You arrive at old age with the baggage you carried through out life and in AD you reflect back on what you did previously - All my wife (and me) can do is WORK. An interesting problem.
Jim, you don’t say if your job is with the Federal, state or local government. I also work for the government (Federal). There has recently been a move by the federal government to have people that can work at home to work at home. I requested to work at home 4 hours a day and nobody believed it would be approved because of the type of work I do, but it was. I didn’t even think it would be approved. What I did know was if it hadn’t been I would have retired which I am not ready to do either. The difference in pay could be very important later for Kathryn’s care.
Point is you may want to put in the request to work either all or part of your day at home specially if you are federal government. I am sure if state or local governments are moving in this direction or not but I don’t see how it could hurt to ask. Eevn if you use the computer a lot they now have something called a MOBI-Key and you don't even need to add anything or have extra space. You simply plug it into your USB and it converts your computer into your work computer. With it you are really woring on your worrk computer and anything you do will be on your computer at work when you get there so you can continue to work on things at both locations.
Jim--Actually, your wife's preoccupation with working could be a bonus now--remember what I said about self-worth? What the daycare needs to do is tap into your wife's nursing background--perhaps the daycare nurse could give her assignments as a nursing assistant? Some phony patient's "charts" to review; tic tacs can be pills for sorting into the little med cups; could she have some "props" that resemble equipment she used to work with, etc. I don't know the ins and outs of nursing, but you can get the gist. My husband was a CPA, so the daycare had him "help" with paperwork, give out song sheets, anything that resembled shuffling papers. This was in the later stages when he could no longer be hands-on with helping the other participants, as he did in the early stage. It worked very well. Unfortunately, it sounds like you will have to educate the daycare staff on going where a dementia patient is. This is standard operating procedure at the good day programs.
I'm a former Federal Gov't employee and was tempted to stop working many times, but hung in there. Take if from me, the pension is worth it, especially if your spouse ends up with EOAD.