I was wondering how many caregivers work full time? My husband is in the stage 3 of 7 stages. Can you work full time and take care of your LO? How does others manage to do it? I need to work at least 4 years.
There is a discussion about caregivers working, but I can't find it. There are others who are better at finding things on my boards than I am. Maybe someone will find it.
I can tell you that we have quite a spouses who work either full or part time. Shoegirl, are you reading this?
At such an early stage, they probably do fine at home while you work, but everyone is different. When supervision becomes necessary, many caregivers start with in home help a few hours a day, and then advance to sending their spouses to Day Care. It's good to know the options and prices at various stages, so you can be prepared.
beachgirl, I made the choice to stop working for the same reasons as bluedaze, though I am in my late 40's and should and would LOVE to be working at something I love. But found it becoming a bigger safety issue as he's gotten in deeper stages. Thankfully we had the funds to make that decision a lot easier. I may be a bag lady when it's all said and done, but hopefully I can do it gracefully! Rk
I decided to "retire" about 2 years after DH was DX'd. He didn't need me at home then but I just wanted to spend more time with him and do some things I knew we wouldn't be able to do later. I did continue to work part time (very few hours) - had a good, understanding law firm I worked for for 22 years! So I can go in anytime I want - whatever day(s) and however many hours. I still do this - found out early on that DH is okay for a few hours when I'm not here - but we can't travel anymore, so I just continue to work part time and do stuff with him the rest of the day. Like going to Lowes at least every other day and on the other days to the grocery stores so he can buy things we don't need! LOL
I have worked full time my whole life. While I work my husband does all the houskeeping, laundry, grocery shopping and is still able to do minor home repairs. The next few months I will be traveling more on business. I think he would be fine to be left alone for a few days but I feel much better now that our daughter has moved back into our home.
I could stay home if I needed to but I'm to far away from retirement and concerned about medical coverage. When the time comes I would like to find someone to live in our home to care for DH.
Beachgirl, my husband was diagnosed two years ago (I knew a year earlier and it took that long to convince his doctor and get the tests to prove it). He has had a continuous downhill slide from Stage 3 to early Stage 7. I work fulll time. Quitting is not an option financially. Also, I love my job! My husband took care of the house and prepared his own lunch for the first year after diagnosis, and we still traveled. My 45 year old daughter had moved in with us and she works full time as well.
Slowly, as my husband forgot to check tags to see what hung up and what went in the dryer, we took over the laundry (after he ruined $200 worth of clothes!); next was the dishes...we reloaded the dishwasher and ran it at night after he went to bed and unloaded it before he got up after we found that he was rinsing out glasses and putting them back in the cabinet! So, as you see, you allow him to continue doing chores until you see that he can't do that chore, and you take it over and he forgets he used to do it. He also took the trash to the curb on Thursday nights because we have a 7 a.m. Friday morning pickup. Then he started taking the trash to the curb EVERY night! <grin>
When he started leaving bread, or weiners, or lettuce or milk on the counters (they were still there when I got home from work, I realized that he would start to prepare his lunch and forget how to do it.), I realized that I had to make his lunch before going to work in the morning. That didn't work long, because he forgot to eat it! So, I started coming home for lunch and preparing it and eating with him, then going back to work. Two neighbors kept an eye on him when we weren't home. He loved to watch movies after he became unable to read his books any more. Reading was his favorite pasttime, and it was heartbreaking when he lost that ability. Anyway, I would get up, (he could dress himself and fix his cup of coffee at this point), give him his medicine (I had to hide it so that he didn't take it twice); then just before I left for work, I would put in a movie for him.
As time progressed and it got hot outside, I realized that he didn't understand that he needed to come inside after a few hours to cool off. The neighbors were watching him to make sure he was okay. My other daughter who teaches school in England was coming home for the summer and she became the daytime caregiver while we were at work. At first, she said that he was okay to be left alone, but after a few weeks (he couldn't keep up the act long) she changed her mind and said "he has to have someone when I leave." (I knew that, but was glad that she agreed!)
I interviewed daycare facilities and found one that I could afford. He refused to go. I found inhome care I could afford. He didn't want strangers in the house. Then my 19 year old grandson graduated from high school and wasn't ready for college, and agreed to come and be the daytime caregiver, and my husband was delighted. It has worked out very well for us. We are fortunate.
I hope my story helps you....As you can see, you take each problem that arises and deal with it. Some can stay by themselves longer than others. You will know when that time fors you arrive, but you need to investigate and have everything in place before hand if you can.
Beachgirl, I was working fulltime but was recently laid off. I need and am looking for another fulltime job. I am now spending more time with my DH. My DH has either declined more lately or, because I am spending more time with him, I see that his ST memory is worse than I realized or I am a little in denial. It is probably a combination of the three. My DH can still spend the day by himself but I can see that if his progression speeds up that could change quickly.
Many here refer to the AD stages frequently. I prefer to just look at the symptoms because some are more debilitating or problematic than others. For example, my BIL also has AD and one of his earliest symptoms was getting lost. While he was still working, first he could not remember where he parked the car. Then later, he could not remember how to get to work so had to take a cab. This continued to progress and very early on, he could not be left alone because if he left the yard, he could get lost. However, my BIL was very "withit" in other ways. My DH has not had this symptom. So you will have to keep a close eye and determine when leaving your LO alone could either be harmful to himself or others.
Thanks for all your advice! Mary I like your comment about taking each problem that arises and dealing with it. I hope that my spouse will be able to stay home for awhile.
I'm working full time and plan to continue. Right now what helps is hiring a student to work with my husband on a project or do yardwork so my husband doesn't get so lonely. That will give us some transition when it gets to the point when it isn't wise to leave him alone. In our rural area I figure I can get a sitter pretty cheaply later on, but perhaps my husband will mellow and daycare will work.
beachgirl - I have to work full time. Between the economy and my love's AD I cry an awful lot. His decline happened very quickly. He was staying home but I was on the phone with him 5-7 times a day - he was very confused and it was very scary. I had to decide to look around for an Adult Daycare and he has been going. My DH is a very kind and considerate man. He is loved by all so that makes it a bit easier. I pray he never gets nasty. He goes to daycare 5 days a week and they are wonderful there. It makes it much easier for me. We are fortunate where we live in an area where a bus picks him up in the morning. I pick him up after work. We have lived for each other for 27 years and have been inseparable. This damn disease is destroying both of us. I have no children with him and his children from previous marriage don't seem to care much so I don't even bother with them. I searched and found a clinical trial that he started in October. It doesn't seem to be doing much at all but I just don't want to give up. I'm praying every day that there is a cure around the corner for all of us. I'm so grateful for this sight - a lot of the time I can't seem to write - I just read and read.
mar, I am sorry about your situation too! I do hope that they find a cure! My AD wants to get in a clinical trial too. He needs to be on the Exelon patch a little longer and it depends if they need someone. He wants to donate his brain to research and hope that he can help others. He has EOAD and found out last Fall at the age 59.
Thanks, Sunshyne and joang! I love this website and come often to read and find out about this terrible disease! I did not know anyone who had Alzheimers. Thanks for starting this website for spouses!
It is very hard to work full time and care for someone with AD. I am able to work from home since I work in the IT field, but I do go into the office for meetings.
But even when I'm home, I feel the need to be with my wife more.
There are a million chores to do, and I barely have the time or the energy. I pray that I can keep working as long as I can, but the future is a scary place for me right now so I try not to think about it, but I fail all the time and do think about it. It seems that with AD, there is no place to hide, no refuge. You're on the front line in a losing battle, and then the boss asks you if that project is done yet. Not to mention the stuff you still have to get to.
My wife and I cleared the snow away this morning. She really surprised me, let's go out and get rid of the snow she says. Ok I run to get ready and she is out the door before me.
I go out, the wind blows the door shut... I forgot my keys. We're locked out of the house. It's windy and cold. I pray that I forgot to shut one the windows to the house. I find one, I climb in, I make us something warm to drink, and then I realize my back don't feel so good!!!
beachgirl, I am still working full time. Sometimes I think I am going to lose it and that I need to be home. He now has a nurse from 8-4 seven days a week so at least I get some peace at work. before the nurse he would call up to 30 times a day to ask where something was, or he would let traveling religious people in the house and anyone else who knocked on the door. I am now very grateful for my job, as it gives me an "escape" and I no longer feel guilty for that "escape" and few hours of respite it gives me. I know that soon I will have to stay home though.
Hi beachgirl, I work fulltime. I think for my personality type, I have to. Mary gives very good advice about the chores around the house. I listened to her months ago and it has really helped. Once B. is no longer able to do a chore, I slowly take it over. I have a caregiver come to the house Mon - Fri from 11 to 1. She gets him lunch and they go for a walk. She is a good friend to him too. Once a week I leave money and a list and she gets groceries for me, which is a huge help. We plan to gradually add more daily time when it seems like B. needs it. My eventual tenative plan is to have someone come and live with us. Time will tell. This January I found a wonderful medical student who come to stay with B. one weekend a month and I get some blessed time away. I find this very important for regrouping and grounding myself. And as crazy as it sounds, I am also working on my master's degree (online). As demanding as it is, I find it channels my mind in a different direction from the sadness of Alz. And it is something positive for my future. Hope this helps a bit.
I chose to leave my job this past January. I could not leave my personal problems at the door any longer. I was really afraid of making a medical error and causing someone harm. Jim and I have only been married 5 1/2 yrs and I wanted to spend the time with him. Now with this new dx of FTD, I know that I will not have him for long. We waited a lifetime to find each other and I want every minute that I can have with him. He is also much more relaxed when I am home. We have had to make many, many sacrifices in order for me to be home, but I think when all is said and done, I will be glad that I was here. The thing you all need to remember is that it is a very personal decision. You have to go with what your heart and your gut tell you. Some people will support your decision, others will not. If only they could walk in our shoes for a day. Hmmmm now there's a thought. Be at peace listen to what your body is telling you is right and you can't go wrong.
I worked full time (80 hours per week) in my own company for the first few years. Husband had worked with me, so he had an office there and the staff knew and liked him. I could take him in to work with me, keep an eye on him (we had a few runs to the emergency room!), make him lunch, take him for walks. He loved pottering around there, wandering through the labs talking with the staff, going outside to talk with people from the other companies in the complex, playing games on one of the computers. During "bad" spells, he could stay hidden away in his office. (I found out one day that he'd unplugged the phone and hidden it somewhere, never did find it.)
That worked well, but then the company went belly up in a most spectacular manner (including the landlord locking us out and stealing all the company assets). Sad to have lost it after all those years of hard work but ... not sad to be home with my love. I sure don't miss commuting during rush hour, either! I am, however, looking for work I can do from home. Like many of you, I just plain need the mental stimulation (not to mention income!)
I had to take over the running of our family business when DH couldn't do it any longer. Fortunately I'm able to work from our home office. I just started having a helper come in twice a week for 4 hours so I can go exercise and run errands. It's working out well and I may increase the hours. Even though I'm home working it is good when someone can spend time with him, even if it's just watching a movie together. I am thankful to have a job and I couldn't do it if I had to work outside the home.
Remember, Hildann, if she's from an agency, she's probably allowed/expects to do light housekeeping. I find that just having the house vacuumed or the floor swept is a great mood-lifter for me.
Guitar Guy, sorry about getting locked out! I hope you both got warm quickly! And of course the boss wants it - yesterday! Murphy's Law! <grin>
Briegull, I'll take folding the laundry, cooking dinner, taking my husband for a walk, as well as vacuuming and sweeping! <grin> I LOVE mood-lifters!
I keep thinking of all the energy I had raising 4 kids and holding down a full time job after the little one was in grade school, and I don't know how I did it! I can't work and take care of a 6 foot two year old toddler now and have any energy left! I think the emotional stress takes energy too.....
I work full time as well. My husband is in stage 5 with AD. I have someone who comes in "to help me" Monday's and Tuesday's for 6 hours each day. My mom is here Wednesday through Friday. I recently had a project removed from my responsibility at work which feels like a huge weight off my shoulders. I know it was a career breaker but at this stage in my life and where my husband is, my career isn't going much farther. I have no idea how much longer I can deal with the stress of work and home. I'm just taking it one day at a time and would like to be able to retire @ 55 with full benefits. I guess time will tell.
'Mary says: I keep thinking of all the energy I had raising 4 kids and holding down a full time job after the little one was in grade school, and I don't know how I did it!"
I was always told that is why young people have kids, not old folks. Somewhere, someone forgot that growing old (especially when one is ill) takes energy too!
I made the decision not to work now, but to enjoy the best time now with her and then I will go back to work fulltime perhaps later this year if a good opportunity opens up.
I retired about a year after DH was dx'd -almost 5 years ago. Wanted to try to travel some while he was okay - however, that was the one thing early on that he could not do. I still go in to work about 2-3 days a week, for about 1-2 hours first thing in the morning. They let me come in whenever I can, as many or few hours as I want - and have been wonderful to me. One of the founding partners of the law firm has LBD - so they have a great understanding of my situation. These few hours gets me out of the house, to talk to people - plus the money isn't bad either!
I work three days a week - 5 1/2 hours each day. I take DH to daycare on those days. I'm glad he likes it there and I don't have to worry about him being at home alone. It's a "cream puff job", I always say. I can wear shorts in the summer and slacks in the winter.( Hey, I'm in Florida so shorts also in the winter most of the time) I'm office secretary in our park and pretty much my own boss.
Hi to all of you! I financially need to work and my DH has 50 hours a week of home care aide. My issue is my ability to hold jobs now.
Until this horrid dx, I had good jobs and would stay with a company 5-10 years at a time. Now, I find I am a MAJOR job hopper. NOT good at age 52!
I don't really understand it well myself ( probably need therapy :) ) but I get a good job, make my goals, but within a year I can't stand the pressure anymore. This last time, I had a boss that adored me, but she wore me out. My cell phone bill went to over 300.00 month because of her constant micro-managing. ( she was once part of the SS, I think) Being on call 24/7 to her AND to my restaurant was TOO MUCH!
Up and quit a fabulous financial situation and took a job as a cashier for close to minimum wage. ( I have over 20 years of management background) I punch in and punch out. No one calls me in the middle of the night. No responsibility. Boring as hell. 40 hour work week.
Sometimes I think that because I cannot commit suicide, I am trying to commit financial suicide.
Patty - I totally relate! I was the Executive Director for a wonderful non-profit agency, and due to DH's dx, and his steady progession, I couldn't take the pressure anymore, either. I am now dispatching for a plumbing company! I get there in the morning, do my job and leave at the end of the day, no stress, no pressure and NO MONEY! I guess it's worth it in the end, my DH is happy to have me home at a decent hour. By the way, you're no more of a 'mess' than any of us! Take care ~Di
I am self employed and usually put in 10-12 hrs a day, then try to take care of my dw and 87 yr old mom...I am doing a very lousy job in all areas, but do not have the luxury of slowing down and trying to take on less. I am wrestling with an octopus, and each time I pin down 2 arms, the other 6 reach out and strangle me. I tried to cut the arms, but they regenerate!!!!
Phranque - hang in there sweetie, you're doing a fantastic job! All we can do is what we can do, if you know what I mean. Because of my decision to cut my income in half for my sanity, for the first time in our 35 years together, I'm living paycheck to paycheck, and it sucks! At least we know we're not alone! ~Di
My husband was diagnosed a little over two years ago and I also work full time. He was fine staying home alone until about 2 months ago when my next door neighbor found him in her year at 4:00 am. I found I had to do something. I was able to put him in a wonderful day care facility which bills on a sliding scale so it is only costing me $144 per month. I live in South Florida where there is a lot of help for families wiht AD for which I am grateful. I have cut my days to 7 hours and take off at 4:00 to pick him up. I drive about 40 miles a day but it is worth it for the peace of mind. I am learning to live one day at a time as I watch my DH deteriorate right before my eyes. I have to work so don't even want to think about the future. I think he is in early Stage 6. He is also blind from his brain where the damage is but he thinks he sees fine. Anyway, reading these emails helps me to know that I am not alone. Thanks for this website.
phranque, here are a bunch of hugs! (((((((((HUGS)))))))))) Remember, you are doing the best you can in your circumstances. In fact, I admire you having so much on your shoulders, and handling it so well! Be sure and find at least one hour a day for Phranque. You have to survive to take care of them and still be whole once it is over with.
Patty and Diane, I understand exactly where you are! I had a job that was stressful and I was working 60 plus hours a week! Just before my husband came down with AD, I had had enough of the stress and I needed benefits (health insurance and retirement) which weren't available where I was. It took me almost a year, but the right job opened up, and I got it! Now I work 8 a.m. until 4:40 p.m. with an hour for lunch. It's 15 minutes to my office, and I work with people who have also become my extended family. I'm so fortunate in this area! Don't give up hope that you will find a job that pays better that still has no stress. They are out there! We have too much stress at home to have stress at work too! ((HUGS)) to all!
Susan, you posted before I got mine posted! (((HUGS))) to you too!