I'd be interested to know how many of us are trying to work fulltime and care for their spouse. Also wondering how you do it? I went back to work last week after having two months off...fairly difficult transition for my husband. I alternate between being relieved to get out of the house and away from AD for a little while and worrying, worrying, worrying.
I will be going back to work teaching in 2 weeks. I am so looking forward to it. I so miss being around people. Last year hubby went to day care. I am starting out this year w/home care. Hope it works. I do not want to leave my job. I am not happy being home 24/7. I am scared that this might not work out though. Guess I just have to wait and see.
I have been working full time since 1976, so doing anything else would be different for me. My husband had retired several years ago, and was taking care of the house, yard, etc. (being the house husband) before Alzheimer's struck him. He tried to hide it for so long, until he couldn't hide it any longer. The first thing I took over was the laundry, due to his forgetting and drying my "hang to dry only" slacks and my having to buy four new pair! <grin> Next: he continually ran water in the kitchen for an hour while doing the dishes after I had cooked dinner (I clean up after myself as I go, so there were only our plates, a platter and bowl and silverware!), so I started hopping up as soon as I finished eating to beat him to the kitchen to do it myself. Next, I had to take over the vacuuming.
As you can see, it has been a slow transition from "before AD" until "current AD" so it is different than having been at home and going back to work after AD. My husband is in his routine. Though it changes as he loses his abilities, we don't discuss them. When it is obvious to me that he isn't going to get that function back, I adapt. He thinks it is normal, because he no longer can remember "how it used to be" and when he gets into his agitated state and sundowning periods, he pulls weeds, or waters the yard, or walks through the house to see if I put anything in a waste basket (so he can empty it - I swear I have the cleanest waste baskets in town!) <grin>
I'll be totally honest here - I'm trusting God to take care of him while I'm at work. He has his cell phone with chaperone, so that if he leaves the block, I'll know it; I have great neighbors who keep an eye out if he is in the yard; and I pray a lot. But I don't worry very much while I am at work. I realize that the time is coming when I'll have to have someone in the afternoons to come in my home to stay with him; then later on, all day. I have things lined up, so I've put that at the back of my mind for now.
Of course, while I'm at work, I check on here 2 or 3 times to be a part of this wonderful group of people, that I have come to love and to count on so very much!
Shoegirl, this is my long way of saying - since we were in our routine before AD, he adjusted easier than your husband who had grown used to your being around. Hopefully your husband will soon get into his own routine as well. I admire those who are doing 24/7. I'm glad that I am not one of them! I love my job!
Mya, isn't having an outlet and getting paid for it grand? <grin>
I work full time and started a new job a few months ago. My boss has noticed me missing a lot of work lately. I "confided" in her that DH has a very serious illness (I didn't say what it was) and she was very understanding, but it's so stressful with DH and the kids needing me. DH attends an adult day program, but there are 2 hours in the afternoon when he's on his own at home. He recently has become bowel incontinent, and there are times when I get home and I can tell right away he's needing cleaning. Now, I'm scrambling to figure out how to get someone to be with him for those two hours.
Mary, you said you have something lined up for this? How did you go about doing that? Does Medicare or private insurance cover any of it?
Kelly, I don't know how you do it! I admire you so much! I went to arkansascaregivers.com (try putting your state before the word caregivers and see if it links you - or does the Alzheimer's Association have a state branch in your state? - if so, they might have the link) I found two day care places and five in-home placement places to call on that site under resources. I went to the day care places and talked to the managers and got a tour of the facilities, and I really like one of them and it is the one I'll use when I have to take him. There is an in-house service located two blocks from my house (couldn't believe it!) and was also recommended by the local head of our state Alzheimer's group. I told her that I would like a male to come and be able to watch movies with my husband and maybe go on walks around the block, etc. and she's lining up a couple for me to interview. They have applicants fill out forms so that they can match up a close personality fit. If you don't like the first one, they will send their second choice. She told me that only once did they have someone reject their first choice. So, I have my fingers crossed.
Medicare doesn't pay and neither does my insurance. This is all going to be coming out of my salary. So I am thankful that I just made the last car payment, and got a raise!!! <grin> It will be $1340 for half a day and $2680 for all day for in-home care. As long as he only needs afternoons, I'll go for in-home care. After he needs all day, it will have to be the day care, because it is $1,400 a month for all day.
Kelly, I forgot to tell you -- the in-home services have increments of 4 hours (for the worker's benefit - they couldn't do two afternoon jobs each day, and so they have to have either a morning session or an afternoon session).
I work a full time job, am a 24/7 caregiver, and the maid, yard keeper, etc. Thank goodness I have a wonderful supervisor and staff. DH is now in a day care Tues & Thurs each week. Hope this can go to 4 times per week soon. Helps on the stress level. My job is my escape -- awful but true. I have worked longer than I can remember so this is nothing new for any of us.
sthetford, how can you work full time and be a 24/7 caregiver? I know I am on call for my husband even when I'm at work, but I consider myself an 16/5-24/2 caregiver. <grin>
I work full time so my DH was used to having me at work. He has progessed rapidly in the last 6 months and it was no longer safe for him to be at home without supervision so I had to put him day care 5 days a week. It is a struggle most mornings to get both of us ready and when I drop him off he wants to know where I am going(I have worked for the county for the past 15 years), when I will be back and why does he have to stay there. Having him in day care has eased my mind and gives me a few hours of peace.
Mary, you sound so calm and rational, I like your approach. I have a tendency to panic a little, but I feel calmer now. I like the idea of just being a step or two ahead and the trusting God part. Thanks for that! I do love working and having that escape. I too have always worked, it is now the glue that holds my shredded sanity together :) This message board and people like you do wonders it as well.
I have continued to work full-time throughout my husband with the disease. At first he was home - like Mary he retired several years ago and was used to being home. He did the errands and many of the chores around the house. We live next to the golf club we belong to so he was able to go over there quite a bit and get a lot of socialization. I had let the club and his golfing buddies know what was going on with him so they were aware of it.
My boss and co-workers have been terrific and very supportive. We have arranged my work schedule and requirements so that I could meet his needs and continue to work. At one point he was calling me 10-15 times a day. Sometimes something would happen that I had to leave work and go home and take care of it. I would leave, take care of the problem and then go back to work.
As he progressed, after many discussions with him, I was able to get him to accept a person being with him part of the day. We started with 4 hours and progressed to 9-10 to allow me the time to work.
He continued to progress and started being up most of the night, not wanting to go to sleep. Showering him would take 1+ hours and I was the only one that could do it. He also got more and more aggressive to the point where I no longer felt it was safe to be around him. We also had several episodes where he would get up in the middle of the night, leave all the lights on and take all kinds of things out of the refridgerator and/or freezer. I finally hit a point where I was nauseous by the time I went to bed every night. At that point, it was time to make a change.
I found a wonderful place that was for people in his stage that was 5 minutes from work and 5 minutes from home so I could see him either at lunch time or after work. That worked out very well until he got to aggressive to stay there. Where he is now is 20 minutes from work and 30 minutes from home. I go 2-3 days a week there at lunch time and add the time to my work day or go after work.
I am up at about 6:30, do everything I need to do around the house as I don't know when I will get home, go to work and usually get home between 8:00 and 9:00 at night.
Yes, I still go to see him 6-7 days a week.
I get told a lot that people don't see how I manage to do as much as I do. My answer is that you just keep going, it is like when I was in college and worked 32 hours a week (waitress/bartender) and went to school full time. You don't think about it when you are doing it, you just keep going.
Wow...good for you therrja. You are a strong woman, just like a lot of the women we hear from here. Thanks for telling me a little bit about your experience. It really helps me...I know what you mean about just keeping going.
therrja, there is one problem with keeping going the way you are trying to do. It is my pattern too, so I'm very aware of what happens when my body decides it has had enough. I end up in the hospital.
I got the worst case of hepatitis that any of those doctors had ever seen. One said that at least once they got me in the hospital I wasn't going to die. It was hepatitis A, and most people who get it don't even know they've had it. 4 days in the hospital; 2 months on disability.
I end up calling the paramedics who bring me into the hospital dying of pneumonia. I don't remember being put into the ambulance, the trip to the hospital, or being taken into the hospital, where they finally managed to wake me up. I had two introveneous going because I had no electrolytes in my system. It was 2 years later. 4 days in the hospital; 2 months on disability.
Next was a major operation. I got lucky. Cervical cancer was operable. Uterine cancer was in an early stage. They removed the tumor that was gangrene. Ovarian tumor was benign. It was about 2 years later. 4 days in the hospital; 2 months on disability.
Do you see the pattern there? I'm in therapy NOW because I don't want to do that again, and I've been in Emergency twice in the last year. therrja, I'm really worried about you. Don't push so hard that you end up sick too.
I have one very saving grace that helps a lot. I have worked where I am for 28 years and have 5 weeks vacation and can buy one more (which I did). This allows me to take a day or two off each month to play catch-up, get things done, go out with a friend or just do nothing at all. That helps a lot with the stress levels.
My doctors are aware of the situation and monitor me very closely (see me every 6 months). My primary doctor is especially aware as his mother also has AD.
My boss described me as a workhorse one time. His comment was that I accept the work and just keep going and get it done. One of the good things I have learned from dealing with this disease is that sometimes you have to make a choice on what you can do and what you should have others do. The heavier jobs around the house I have my godson do or get help with. The heavy gardening work (mulching, trimming bushes), I leave to my landscaper and mowing the lawn goes to someone else.
With all of that, so far, so good. I think it helps that I am was very healthy to start with and really don't have a family history of bad health. There are a lot of days I am very grateful for the genes that I inherited.
So far, the only side affect is high blood pressure which is handled with medication.
Thanks for the concern, Starling, after reading everyone's stories and comments, it has made me very aware that I have to pay attention to myself - I'm working on that one. My nature is to go until I drop and put everyone I care about before me - this disease has taught me that sometimes you have to take time for you.
My hubby was just diagnosed in december and has progresed very quicky. He is just 64 years old Iwill be 52.At this time he is in the Hospital because he was shaking uncontrollably on monday and has been in since then.We still don't know what caused it and they have done evry test there is MRI,Catscans ,Sonograms.They are talking about putting him in a rehab to teach him to walk with a walker.Anyhow I work full time and that is how we have our insurance. I'm not sure what I'm gonna do when he comes home .Anything I looked into I may not be able to afford home health care.
emmyspages, Welcome to our group. Check out some of our threads and you'll see you are in the right place for support, info and more advice than you might want, and a wicked sense of humor at times.
Is your husband on any meds? Do you have any family around to support you?
My DH is 57, diagnosed about a year and a half ago, although many of us find a diagnosis quickly and some after a lot of doctor visits.
Welcome to my website. You will find much support and information here. Please go to the home page - www.thealzheimerspouse.com, and click on "Newly Diagnosed" - it is on the left side just under the message board section. The information in there will help get you started. After you have read that, come back with whatever questions that weren't answered in that section.
Is your husband on social security disability? If he is not, let us know, and we'll be able to tell you how to get that ball rolling. We have a member here who is somewhat of an expert in that field. She helped my husband get SS disability.
We are all in the same boat here - as spouses, we understand each other as no one else can.
I am so sorry this is progressing so rapidly for you. It must be terribly stressful, to try to adjust to all the changes in your lives, keep up with all the doctor appointments, and work on top of all that.
You said your husband was just diagnosed ... was the diagnosis Alzheimer's, or some other problem? Do they think it could be Lewy body?
Is your husband a veteran? There might be some veteran benefits you could apply for. If he is, we can give you tips on how to get the ball rolling on that.