Ok it's been a while since I've posted so here goes... I may leave something out so let me know if I haven't made myself clear.
It's been over a year since my wife has been Diag with AD. She is 58, I am 52.
My job is with computers and I've been able to work from home and go into the office as family and friends help out and care for my wife She's still able to do a lot of things, but I fear for her safety as she now has trouble using a phone.
So last month, the head of my dept. tells me that there has been "talk" about why I'm not always in the office, AND the fact that he doesn't think our HR dept has any plan set up for me in the situation I am in. It is because of him, that I have been able to work from home. I asked him if I could last year. It was he, who protected me during the layoffs we had earlier this year. He told me so, and of course I suspected. He is a wonderful man, but now it looks like I am going to have to go into the office 5 days a week or else..I should add that I have been with the company for almost 20 years... not that it matters much these days... I'm just saying...
So I want to take care of my wife, she will not be able to deal with a stranger in the house. Every time I bring it up it just gets her so upset that I can't talk about it anymore.
My primary goal here, is to care for my wife and MAKE SURE she has the best QUALITY of life for as long as she can.
So should I just let them fire me?
We could live on what she gets in SS and her Long Term Disability. I will cash out my 401k. I have a pension. It's not much so I'll take a lump payment. I thought I could take on some students (teach music theory and guitar) as that is what I majored in at College.
I know what most people would say. I know what I feel in my gut. I love my wife more than I could ever say, so I WANT TO TAKE CARE OF HER! (Yes I know, I'm using caps! I'm Italian, I get a bit passionate at times.)
So what say you wise and wonderful people? I know, ya think I'm nuts!!! I AM.... about my wife!
Ahhh shoot... I knew I'd forget something.. Uh... Yes I would lose my health care insurance as well. My wife has Medicare Part A and D. I am fairly certain she would get part B because I've lost my job.
Also, I did speak to an Eldercare Advocate about this and she did say that getting in-home care would be good. Something about Spousal Refusal(great phrase!) in the Medicaid laws that would help with the cost. That's great, so I can I have someone take care of my wife, it gets paid for, and she is miserable. Not what I call taking good care of her.
Oh yes, the Eldercare Advocate talked about getting someone to help her Dad. She said she was a lovely person and when she would come home from work and they would be playing the piano and singing and oh it was so wonderful. First of all, it was her Dad, not her husband. Never I have heard a more hollow, callus and insensitive answer to a problem that can only be described as indescribable. Did I say I loved my wife? What the hec did she think I meant??!! Do I need to move to France??
I did exactly that. I figured that now is as good as she will be and I wanted to spend the time with her now, rather than wait till she does not know who I am. I am planning on going back to work when she gets to that point or I run out of money. Once you make that decision, do not quit. Take family leave and you will get your benefit paid for by the company for 90 days. HR will start pressuring you to tell them if you are comming back once you take Family Leave. Stall as long as you can. If fact you might use up your vacation first then take Family Leave then quit because you can not meet your company expectations once they changed not working at home. Then you can file for unemployment and get it. I have not worked in 2 yrs. I walked away from a high paying position. I have enjoyed taking the trips with my wife and spending this time with her. Insurance is the only issue I have now. My wife got Medicare after the 2yr wait period from the time she collects Disability. for being under 65 yrs. old. I picked up the Cobra option as it would cover my wife with her condition. Cobra last 18 months so you have a 6 month gap. It just depends upon when she got her first disablity check if you have a gap or not. Cobra is not cheap I was paying $950.00 per month.
Thanks for sharing that... makes me feel I'm not so crazy... well maybe we both are. In the best possible sense of the word of course! :>) Health Care insurance will be the tough nut to crack... I'm looking into that... the only good thing that our company did when they laid off a bunch of good folks earlier this year was let them keep their Health Benefits for a year. Maybe I'll be lucky...although based on what my wife and I have been through I'd say not so much... yet we push on!!
I would not count on that. The company had a layoff and extending benefits is a way for management not to feel as guilty about the layoff. If they fire you, you'll get nothing. Take vacation, then come back and ask for family leave and then quit. If that is what you want to do.
Guy, you are almost 55. If you can hold on until 55 to cash out your 401K, then you can avoid paying the 10% penalty. We found that out when Art was fired and we had to either roll it over or cash it out. The only thing we paid was the tax on it. Since this was February and we only had my unemployment, we had little income and got all the tax back that was kept out. Quitting because they will not let you continue to work at home will most likely not qualify you for unemployment. You might be better to use vacation days, take family leave, then go back working the way you have been and let them fire you if they don't like the arrangement they have previously agreed to. Just a thought.
Guy, I believe you need to be 59 1/2 before you can cash out your 401K without paying any penalty. It does depend on your company's plan. My husband's plan did not allow for cashing out at that age but we were able to rollover into an annuity once he was declared disabled by Social Security. I was afraid to lose any more money.
I do agree that if you quit, you will not be able to get unemployment. Even if they fire you, I believe you can get COBRA for 18 months.
Guitar Guy: In the same industry, I did what you are contemplating. I resigned/retired/quit. I couldn't imagine anyone else taking care of my wife, plus the money was just never going to be right. The idea was to go back into consulting and working from home. I severly underestimated the shadowing. It went from zero to 100 in a week. There was no I'll work in my office and you can watch TV in the living room. She already had anxiety about business travel. If she couldn't see me, I was out of town, not in the next room. Work rapidly became impossible. No work, no money. COBRA was $1250 a month. I was 60 at underfunded "retirement". She was 50. The goal was have the best days possible for as long as possible. Money available meant that we both needed to be dead within three years. Then came rapid dementia decline, then came her small cell lung cancer (chemo actually improved dementia behavoir), then she died, then my son died, then my dog died and now my father-in-law only has a couple of weeks left. So far 2009 has been a tough year. Apparently, I am immortal.
The high cost of COBRA turned out to be a pretty good investment. For $1250/month, insurance paid around $400K in chemo and hospital bills.
No one can really advise you. Men do whatever we want to do. Make a plan and execute. Stay flexible; adjust the plan as required. You will learn new survival skills. Learn to accept what's going on (complete waste of time wishing and hoping); don't take verbal or physical attacks personal; keep everybody alive one more day, everyday; rest whenever you can(rest becomes entertainment). The vacation, then family leave sounds like a good plan start.
GuitarGuy: I am not sure if you have talked to your boss about it or not. Most companies can't afford to let a good employee go. Talk to him or upper management and ask them if they are satisfied with your work. If they are explain your situation to them again and tell them if other employees ask why you don't come in to work it is ok for them explain to the employees that your wife is seriously ill and you need to work for home. I don’t think any employee would want to change places with you and they would understand. I would think most employees would think it was great that the company they work for is willing to go the extra step to help their employees when they can.
That or your boss should tell them it is a privacy issue and not open for discussion. The company has the right to run their company without explanation to anybody.
If they are no longer willing to let you continue to work from home you may be union protected because they have already allowed it and did not let you go during the layoff it may fall under some kind of labor relations law (if you have a union use it). Even if you are not a member of the union yet I believe they are still required by law to cover you. There is also the Family Leave Act to consider. Another thing is because they allowed you to work from home for so long you resigning may be an acceptable reason by the Dept. of unemployment in your state because it may be considered a change in work place.
It may be that none of this will help but try it all. You have nothing to lose.
One other thing if you want to continue to work even if you have to go in more often maybe you could have someone come in while you are still there. That way your wife may form a friendship and be more willing to accept your being gone at times knowing she would have the security of having her friend there with her.
GuitarGuy, our situation is different because we are older and retired, however we were at a point where things were so difficult we had to do something..place DH or admit him to a psych hospital or SOMETHING.. I contacted HOME INSTEAD..had the same reservations about BRINGING someone in to the house.etc. (I haven't had household help since our children were young and we hired someone to come stay with them so that I could work). I told the Home Instead agency our situation. Instead of a CAREGIVER person coming to stay with DH.. a housekeeper is coming to help ME in the house.. two days a week.. We started with 3 hrs. at a time. This week, she will come two full days a week 9/5 and she's 'busy' doing housework BUT at the same time visiting and getting to know DH. He likes her.. she's funny and laughs a lot and is a whirlwind of cleaning and organizing. DH ALLOWED her to organize and clean his room.. which is a small miracle. He would not let me touch anything. Maybe we are just lucky that this person seems just right for DH's temperment etc. I've made up an excuse to get out during those two days so that I can get some errands and business tended to. He has someone to talk to and tell all his old stories to while she's actually doing wonders here in the house. She likes to stay busy she says. It is something you might consider if you have the opportunity to EASE into such a situation.
deb112958, It is true that a person can take the 401-K at 55 if they quit work, the stipulation is that you must take the money over a 5 year period in equal amounts, in other words you have to decide how much each year you want to withdraw before you start drawing and keep it the same amount each year. If you do this to avoid the penalty and have a large amount in the pla You would not be able to lump it all out at one time without a huge income tax bite, even though you would not have the 10% early withdrawal penalty with a large amount if you did not phase this over a 5 years period you would still have to pay out a lot of money. After the 5 years is up you would be 60 years of age, old enough to change the pay out amount and still not have the penalty. This is a Federal Law that allows the early withdrawal without penalty of the 401-K. You do still have to pay the regular income tax.
I would really think twice about giving up my job Guitar Guy, I know I sound heartless but this disease is so long in duration that you have to not only think of your wife but also of yourself and your future. She may not like someone coming in to help but then you may not like what you will face when loosing all you will be loosing. You have to realize that your income is also helping her to have a decent life. You will last longer as a care giver if you have some time away as this progresses. If your wife was reasoning the way she use to she would tell you the same thing I am telling you. We all feel the way you do in the beginning of this disease, however living with it for 9 years, beginning 10 years this November, I know first hand how much you will need to get away some.
Even if you quit your job and stay home she will progress to the point that you will wish you had stayed and hired help.
My vote is to keep your job, hire good help at home, and take good care of yourself and your wife. Loosing your health insurance alone is enough for your to keep working.
No one has mentioned here the question of "day care" which I know some of us use or have used in order to keep working. I'll try to find the thread and bring it up. Sometimes going out of the house to "help out" at a daycare center works when bringing someone in wouldn't. Also Judy's idea of getting someone in to help you out with stuff around the house is good but it sounds like she's not going to go for that. Can you start by taking a family leave and have someone come a day or two a week to help you out - so she gets to know them before you return to work?
I agree with Dan King that staying home and trying to work full time may be stressful - but that's what you've been doing already. You can probably get consulting work but I'd check out contacts before you make any decisions. I DID get a lot of work when I retired at 62, so much so that eleven years later I'm still doing a bit. Since it's computers, and you've been doing a lot at work, make sure that you know how to do the latest stuff. Cobol programmers never had it so good as when companies were preparing for the millenium change over but I doubt they've gotten much freelance work since! Can you do java programming? There doesn't ever seem to be enough people who can around here.
Guy, i tend to agree with Jane, many of our loved ones refuse home health care in the beginning. some it takes a while and go thru several caregivers to find the right click. a lady caregiver that will be company to your wife and help entertain her while you work would be a good choice for her after she gets used to her. i agree that losing your health coverage in this world today is critical -a 3 day hospital stay for me just for a checkup was over 12k- you do need to think of your own future like the others say. some here say having a job to get into the real world and away from AD saves their sanity. your DW unfortunately will move into the stage soon enough she wont know who is caring for her or not. i think its a good shot to try to find someone and try the care at home and keep the job and see if it is something that can work. you can always change your mind and quit to stay home if things dont click. its my opinion that its true our spouses would not want us to give up our lives and make drastic changes to become fulltime caregivers. hoping you come to a decision that works for you both. my best, divvi
I can certainly identify with wanting to take of your wife because you love her so much. I'm retired, so I don't have the problem of satisfying an employer, but more and more friends and family are telling me that I should find a nursing home for her so that I can "have a life." My answer at present is day care four days a week which gives me time to do what I need or want to do and yet we are together for a few hours in the evening until she goes to bed.
We are now beyond the stage where we can take trips or vacations, but we did travel about every six months until last year. Those memories are precious to me. I would suggest that you cram as much enjoyment as possible into the time that you have left as long as she is able to. Even now we go out to eat a couple of nights a week even if it's only fast food. Sometimes she won't sit down, but I don't sweat it. I just cut up her food and let her eat standing up! Hnag in there, your love will prove to be both a curse and a blessing!
Guitarguy...I so admire your devotion to your wife. We all wish we were loved like that. BUT (i can use caps too, I'm Irish) please take time to think this through. I tried everything to keep John with me. Family leave, reduced hours, family and friends, then day care. Finally I gave up my job. A month later John had to go into a facility. So here I am, alone jobless and broke. I made my decisions based on emotion not reality. Please take a step back and think of your own future. It could come much sooner than you think. We are here to support you in your decisions but if I can spare you my mistakes I have to try. You and your wife will be in my thoughts. cs
Guitarguy, I went through a lot of the reasoning that you are currently going through with my husband. I was fortunate enough that when he was diagnosed, I ran all the numbers for the future for me based on various ages and we looked at the finances. He did not want me to stop working and based I the numbers I chose to continue to work. It was often difficult, but I am so glad I have continued to work. Work has provided a stable environment and talking to "normal" people within my crazy AD world.
I worked with my management and we restructured what I was doing so that I could be available to take my husband to doctors and whatever else he needed. When I finally had to place him, work was part of what kept me stable dealing with all of that.
Financially, we will probably run through all of his money. My continuing to work, is allowing me to maintain a reasonable lifestyle and not impacting my future finances in a negative way.
I am also in IT. I also looked at the reality of being out of the workforce for a few years, having a severe hearing loss, broke and having to look for a job after he dies. That was a very grim picture.
I was able to bring someone into the house to take care of him during the day and it worked out pretty well for him. Keep in mind though that if the person cannot make it, it may be difficult to get a replacement for the day so you will be using vacation time for that.
This is not an easy decision. Your heart and brain don't always go the same path with this. You need to think short term, long term and what you need to do to live with yourself after she is gone.
There is some excellent advice and thoughts above, take the time to really think this through for what is right and best for both of you.
Everyone has given you excellent advice. I want to emphasize - IF you decide leaving your job is best for you, DO NOT QUIT OR RESIGN. If you quit, you cannot collect unemployment. If you ask to work at home, and they refuse, it will be up to them to fire you. Then you can collect unemployment.
Guitar Guy--All good advice above. My 2 cents. Regardless of how you decide on continuing to work for the Company or not--start having some in-home help. Get her used to having someone else around. You never know when you might need to keep an appointment, spend extra time on a consult, whatever. Also, as I'm sure you've been finding, everything is or will be on your plate to take care of. Having help, even a few hours a week, takes a bunch of things off your plate. Regardless of which way you decide, you are still the one taking care of her. It's more a case of how many hands you can command.
Guitar Guy you want to be able to look back on your decision and have no regrets. Either way you choose you are making the best choice at the time. Things change and it might be better to keep all your options available. In my case I was able to collect unemployment. It was rejected the first go around but a court hearing over the phone, the Judge ruled in my favor. I was unable to meet the requirements of my employer based on meeting the health needs of my disabled wife.
Jane - we paid no penalty when he cashed out his 401K and took it all. But then, it was only $12,000 -- $8.000 after federal and state income taxes were taken out. That could be why we could take it all at once. Glad we got 95% of the taxes back because it really was needed.
Guitar Guy - do what your heart tells you but as others have mentioned, I would start looking into some in-home help even just a few hours a week to see how it goes. The time will come that you can not do it alone. Good luck with whatever you decide.
My DH resisted help, but everyone else was right. I brought in a male nurse for a week, and he was just fine! It goes along with the "don't discuss everything with them all the time." I tell my DH that I need the help. Period.
Good luck. Being the 24/7 caregiver is the hardest job I have ever had in my lifetime...and it never gets easier as the years pass by.
A lot of good comments above. I would recommend most other options other than quiting my job. I am 72 and would dearly love having a paying job again if I were physically able to do so. Not working is really nice but I so miss the interaction with people. When you are 24/7 caregiver year around, even for a loved one is hard on a person and you age faster. Being without health insurance would absolutely blow my mine, scare me to death, whatever.
Even while still working you have many hours a day to enjoy things with your wife. She is most definetly not going to be happy about someone coming in to care for her because in her "mixed up mind now" she of course is focused on you. If she were not "out of mind" I feel sure she would want you to keep your job for the security for both of you. Jobs are hard to come by now days and the older we get the harder they are. Like Nancy said "don't discuss everything with them all the time and tell her that you need the help. Period."
It is important to take a positive position and not offer options. Good Luck with whatever you decide.
Guy--I also feel you should try in home help/daycare BEFORE quitting your job. You may be surprised at how well it can work. It doesn't have to be an either/or proposition. My husband attends daycare 2 days a week, we have an aide who comes in 4 hrs a day the other 5 days. This combo seems to be working for now. As someone mentioned above, don't underestimate the shadowing behavior. Even if you quit your job, you will still need respite to survive it--so aside from the income, another huge plus of working outside the home is that it is a good source of respite for the caregiver.
Thank you all for your support and suggestions. I will consider everything that has been said.
I wish I could comment more but we have an absolute tragedy happen to some dear friends. Their first born son was murdered night before last(he was 22) and our group of friends are trying to hold it all together. I was not going to mention this, but I just felt I had to write about it. There may be many problems and hardships I will face, but how do you deal with a murdered child? I have no words...
Sorry guys.. but I just had to get that out and I didn't want anyone to think I didn't appreciate your support and advice. The mother is adored by my wife and my wife is having quite a hard time with this.
Life has a way of reminding me ..just when I'm saying I have it soooooooo bad, that there are so many people out there who are hurting so much worse. I am so sorry ... How on earth did it happen?..... So horrible, so sudden... those poor people.
Guy, please hug your friends for me. How horrible for them. Our family lost a beautiful, neice when she was only 17, as a result of a incompent driver. It is every parents worst nightmare.
Susan L..........re: your post....it IS every parent's worst nightmare...and the greatest fear of every Alzheimer Spouse. I read posts about the challenges many of you face with spouses no longer capable of driving safely. We are working on the problems, imagine how many people are driving around us who are even more impaired.
It has been quite some time and my wife has gone through some difficult declines since I started this post, but I wold like to let everyone know that I still have my job.
Due to a saint who works for my company, the HR dept. Has allowed me to work from home.
So at least for now, I am still employed, however, my wife has been hospitalized twice due to fainting spells and her decline had been very steep. I have to post more but time is very, well scarce. I want to thank all of you for your support and suggestions. Hugs from me to all of you!
GuitarGuy, it is good to hear from you again! Welcome back!
I'm relieved that the HR has continued to allow you to work from home. The financial strain on us for getting help for our spouses is very hard. Those of us who work, have to do so.
I'm sorry to hear about her decline, and it has happened to all of our spice as well. We are hanging on by threads, and by hugs from each other as we turn another curve in this downward slide our loved ones are taking.
GuitarGuy, thanks for checking in. What a blessing that you can work at home. Having to deal with all the horrors of dementia is bad enough, without the possibility of financial ruin.
Thanks Mary and Folly I appreciate your comments... Would love to respond more but I need to go read the thead on incontinence...that's going to take me awhile...