Everyday I wrestle with wanting to stay home with my husband instead of going to work. I have to work at leat 5 more months for retirement reasons. I took a 4 month leave of absence this summer and I really enjoyed being with my husband. I work so far away from home and I am gone from the house 11 to 12 hours a day with a long commute. I like what I do, but I want to spend more time with my husband before he deteriorates further. I have a guy come into our home 7 hours a day. He has become my husband's buddy and that part is working out great. I feel like 2 days on the weekend is not enough. Do you think I would get more frustrated being home all day? Who is staying home? How is that going for you? Who is working and how is that going for you?
I want to say that I have one 19 year old daughter at home. My heart goes out to you who have young children still at home. This is difficult enough with grown children.
Thank you Joan for creating this place to for us to go to talk about this.
Actually yes...I think it might be frustrating to stay home all day! Especially if you enjoy working. But then, you said you really enjoy it. Maybe you should give it that obligatory 5 more months to think about it. I do stay home, but I have rarely had a regular, paying job, per se. We fortunately have managed to structure investments and the buyout plan from my husband's business (now being run by his partner/brother, the buyer) such that we'll probably be ok without re-establishing anyone in the work-world. I do, however, continue to work hard at trying to sell the books I write, and that would help.
I think it can be an isolated world, spending the majority of your time with someone whose mind and personality are fading, so a lot depends on the stage your husband's in.
Polly, I would recommend you keep your job for the next five months...it could make a difference in your finances in the long run. You have a good support system for your husband that seems to be working and, you will probably have a long time at home with your husband. (We are in year eleven....!)
But, that being said, you should do whatever makes you happy and comfortable....
I too want to thank Joan for creating this site - it is the best place! I look so forward to coming here. Everyone asks questions that have been going on in my mind. Pollyp53, I too wish every day I could be home to enjoy my husband as he is now. Our weekends spent together are good - I work full time 5 days per week (I had to put my darling man in a daycare.) He is so much better when I'm home but I can't afford to stay home. I do wrestle with so many thoughts but mostly should I just sell everything so I can be with him? Decisions, I'm so tired! I feel so down so much. Reality is that in a way work occupies my mind sometimes.
We have been inseparable for 25 years - I hate that this has happened. I have no children so it always was just my loving husband and me. I feel broken.
Right now I am crying because I know your pain so well. Please remember that you are not alone in this journey. We will be married 24 years March 31. I am tired too of all the decisions. This is what I have chosen to do. My husband still feels love, has a sense of humor, smiles and laughs all of the time. I have decided that on those precious weekends I am going to enjoy every moment of that. He doesn't always understand what I say, but he still can laugh. I sure do miss talking about serious things with him. Thank you so much for responding to my post. You and all of the wonderful people here are in my thoughts.
Pollyp, Lots of hugs to you, I know it is so rough, but you are doing all you can do to enjoy time with him. Keep it up, God knows you deserve all those smiles he is giving, it is because you are giving so much of yourself that he is still doing it. Receive this love from him and HIM happily as you are and thank you for sharing PAT
I have been reading some of your stories and i cannot say what i would do in your positions but i have one of my own. I know some of you struggle with a difficult decision like weather or not to do more for you LO.
On my 29th birthday i received total responsibilty of my grandmother. I was oversees when i got the news that my mother, her caregiver, suffered a massive heart attack at the age of 55. 2 weeks later my mother died. I was then left alone to deal with all the loose ends to her entire life. Taxes, financial statements, bills, medical insurance, the list goes on and on. I won't go too far into this, most of you know the feelings and problems associated.
Why do i bring this up? It can happen to any of you. Your main responsibility is to yourself. What would happen to the person you are taking care of if you were to go before them? Would they end up with your kids, or for some of you, your grandchildren? Thats what happened to me. I am not only losing my grandmother, but i have already lost my mother in this process. I am not angry about the situation but it could have been different. if only my mother got out of the house more, used day care centers, had an alternative respite care service for nights and weekends, or even kept working, she may still be here today.
I wish all of you luck. You have taught me much by reading your stories. I hope my perspective can help you out a little as well.
Hi Polly, I so feel your pain! I just left my job 6 months ago, but I was not anywhere near retiring and was under alot of stress at work. It seemed I worked all week ,came home exhausted, and the weekends he still wanted me to go , go , go . We would come home and he was ready to go again! I was worn to a frazzle. I felt guilt if I didn't just go as I knew there would be times later, I won't be doing that and would wish I took the time. So , I did run the road weekends and my house was getting so far behind I felt that much more overwhelmed. The dr and I had a long talk and he told me it was nearing the time that I was going to have to be home, so I did and have seen since I have been home , I probably should have sooner. BUT, he was here alone and I did not have the help you have or a situation to do something like that as he told me he didn't NEED a babysitter!! I think since you have just 5 months , it may be worth your stay to finish it out, but I will tell you like I tell my kids- think about it, pray about it, and do what your heart tells you!
Wow Fro!! What a responsibility at such a young age!!! I'm sorry about your mother and sorry that you have to go through all that you do. You seem to be very level headed and mature. You are exactly right about the caregiver taking care of himself/herself. I've found myself wondering lately what would happen to my husband and my kids if I should go before him.
I think in a few days I will approach the subject with my husband and maybe we can get our wills finalized and arrange for those types of scenarios.
It is a huge responsibility for anyone of any age i think. I saw my mother care for my grandmother for many years. I would relieve her at times on weekends but it wasn't near enough. My wife and i take my grandmother to daycare every weekday between 8 and 5 so we can both either go to school or to work. It also gives my grandmother the opportunity to be around people of her age and the same thinking capacity as her. They all sit around and tell the same story everyday and it never gets old because no one remembers what they talked about yesterday. Its sad to say but true as well.
On Friday nights, we have another company pick her up from daycare and drive her home and sit with her until 10 pm. This gives us date night every Friday which we take complete advantage of. Also for some of you we have a volunteer group that helps out called Faith in Action. This is a group who will send the same volunteer to your house on terms agreed upon, usually a few hours a week so that you can go grocery shopping or get your hair done or something of that nature.
I encourage everybody to reach out for the help which is out there. Besides you always hear that it takes a community to raise a child, why can't that same community help you out in times of need when you grow up as well.
I know by now that several of us still work outside the home. I have a year and a half to retire at 62 and I do carry our medical insurance. My husband still stays at home alone during the day, but I am aware that I am in a rather unique situation there. Even before AD my husband experienced extreme tiredness so being at home for him simply means being with the dogs watching tv or dosing. Our neigbors look out for him. Certainly when I am there I keep him more engaged and though it is a struggle I can get him to try to do more activities. Anyway, part of me feels that staying in work is good for me , but many mornings it is hard to leave him . Sometimes I wonder if I shouldn't chuck the job , learn to live on less and be there for him now.... If the time he knows me or can enjoy things is so limited, am I being selfish by staying in work.... In some ways my job is my salvation, but at the same time is this one of those times in life when I should do the unexpected. Do others of you struggle with this? We certainly aren't well off so it isn't that I would be able to live off investments. I really would need to be cautious. But part of me wonders how I will feel if I work the next year and a half and finally get to stay home to a man who no longer remembers me.... Have any of you made great changes in how you live your life just to maximize the time you have.Do you think about quitting? When I call my husband he always asks if I am coming home now.....
Laurie-I worked until almost the time I had to place my husband. I didn't realize how impaired he was. When he became a danger to himself and others safety became a big issue. I think if I had been at home the last year I would have become a basket case. The disease will progress no matter what you do. There are no "what ifs". Alzheimer's will kill two if you let it.
Well, I haven't exactly thought about quitting ... I've had it forced on me. The company my husband and I started will be filing for bankruptcy if I can EVER get everything done -- sorting, shredding, packing, storing, income tax returns (income ... that's a joke) prepared, and the papers filed. He handled the financial end of things, and I didn't realize he was having trouble with his job until it was far too late.
But, aside from that, I am looking at the same decisions you are, and I don't know what to do.
Do I look for a new job? or do I spend time with my husband, while he is still mentally alert enough to know I'm there, and to enjoy spending time together? For 18 years, we worked together, and even after he became too sick to work, I've still been able to bring him to the company with me. I really doubt that a new employer would let me bring him along! and I'm worried sick about how he would react to being home without me all day long.
I've always worked, and I like working. And money would sure be tight if I didn't have any income any more. Plus there wouldn't be any health insurance for me, because when a company goes down, there isn't even any COBRA. My husband is old enough, he has Medicare, and I think I can finagle Medigap if I close things down in the right order. But I'm young enough that Medicare won't kick in for me for quite a few years yet -- or Social Security, for that matter.
And if I'm out of the job market entirely for too long, it will be very difficult to get back in. I'm a scientist, and science changes so fast, it's hard to keep up-to-date even when you're actively involved.
I have this fantasy that I can find a job with reasonably flexible hours and -- much more importantly -- that will allow me to telecommute at least part of the time.
I've been asking myself the same questions - but I HAVE to work - to pay the bills, for the health insurance (mainly his medicines, which with insurance still cost $130 a month)(one alone cost that much without insurance) and for my retirement fund.
Bluedaze, when did you know that it was time for placing your husband? I want to wait as long as I can - he doesn't wander, but I don't know if he would let strangers in the house either.
Sunshyne, I'm sorry you lost your business! Laurie, I think our husbands are about at the same point for now. I'm just taking it a day at a time.
You know, Mary, in a funny way I'm not sorry about the company. It was taking 80 or 90 hours a week, and I couldn't possibly keep that up and take care of my husband if he gets any worse. I've been constantly feeling guilty that I'm not spending enough time with him, as it is. In many ways, it's better to have had the decision taken out of my hands.
I am sorry I have to pack the whole thing up, though. I HATE packing. :-)
I've tried to 'follow my bliss', but of course, if you are needed for your income and medical insurance it is a difficult choice. I think I would definitely hang in 5 more months if that meant retirement benefits... I saw a fellow demonstrating his take on life: He pulled out one of those tape measures men use (can't think what they are called) and found the number that represented how long he had lived. Then, he checked the actuarials for the average life expectancy for him and added that on. It was easy to see he had probably lived about 90% of his expected longevity and his statement was, "with this much time left, I need to do what it is that I want the most". We all know AD lops off way more of a person's life, so what do we do with that information? I am lucky because we've made it to 65 with Medicare and supplimental insurance. We also have no bills and owned our home. Not only did I know I didn't want to have a job, I decided I really didn't even want to have a yard. I feel as if I have a more than fulltime job right now, since all we do is up to me. My husband sleeps a lot and that is my time to check this website, email friends, etc. I have always volunteered and now have been able to make some calls for one of the presidental candidates, which keeps me involved some with something other than AD. And, of course, we are traveling, so it is much different than living at home. I feel for everyone who is now having this struggle. I made my decision a couple of years ago and have never been sorry. Good luck!
I meant to say one more thing - remember Sandra Day O'Connor retired from the Supreme Court to care for her AD husband. It seems she waited too long and now he has his girlfriend in the NH. It is so tricky to know when is the right time...
I Frand, I got your note , thank you. I hadn't wanted to make a big thing about you sending me the CD in case you did not want me to mention. But , I do want to tell everyone how lovely and restful your CD is and that offering to send it to us at no cost is very generous!! You say it makes you feel good to do this for us, I hop eI can find a way to pay everyone back as well.
I do not know if there really is a timetable of when to quit work or when to place your loved one. I live my life one day at a time and make those decisions the same way. My husband was diagnosed in 2003 with AD and I was still working. By the middle of 2005, I had to make the very difficult decision to walk away from my career, I was 58 at the time. My DH seemed very capable of staying by himself, but, I soon learned from neighbors that this wasn't the case. He would leave doors open, sometimes just walk around for hours around the house, seemingly lost and then came the day he walked out in the front yard and began to scream my name and start to cry. They said he heard a siren and thought I had been hurt. My neighbors were really nice and understood, but, I knew it was time to walk away and devote my time to his care. We have long term care insurance and I could have stayed in the workforce longer with assistance, but, I knew from his actions that I was losing my DH day by day and that I needed to spend as much quality time with him as I possibly could. Yes, money was very tight, but, I learned to adjust. We took walks together, went shopping together, just went to the beach or bay and sat there together, I actually slowed my life down and began to smell the roses. Of course through all of this came the many heartbreaks and challenges presented by AD, but, we all just do the best we can. Unfortunately, last year I had to place my DH in a NH. I am now just 3 mos. from getting Social Security, I am taking it at 62 and I also have a really fun part time job at the Arena/Auditorium as an Usher and Concierge for different Broadway Productions. Concerts, Ice Show, Hockey, Arena Football, etc. I go to the NH everyday for 4 hours or so and help feed my DH, take him outside for strolls in his wheelchair, etc. This was definately not the way we had planned our retirement, but, it is what it is and I am just doing the very best I can in the situation.
No one can tell another person when the time is right to quit work, or place their loved ones. That is an individual decision we will have to make on our own. If I was only 5 or so months from retiring, I believe I would just keep working, but, at the same time have someone monitor my DH just to make sure he was not wandering off and was safe. Unfortunately, wandering was one of my biggest challenges to contend with. He always loved walking and jogging and would take off and then could not find his way back home. I too would tell my DH to try to keep all doors closed. He would answer so clearly "OK", then 2 seconds later, Poof, it was gone. He would seem so convincing with his answers, then I began to realize that they were short lived. Just AD !!
We all just do the best we can and make whatever decisions we feel are right for us.
My DH has FTD. As it was explained to me earlier, it is like Ad on Steroids. We have only been married 5 1/2 yrs and I feel very cheated. The doctor told us that he expects Jim will need fulltime nursing care within 2 yrs. I left my job in January, due to being preoccupied with all that was going on with him at home. I could no longer leave my personal life at the door and I could not risk making a medical error. I was working at a career that I adored, as a Medical Assistant. Now that we have the dx of FTD (last week) I am so grateful to be home and able to spend as much time with him as possible. He is no longer able to drive, watch our grandson who we are raising and it is too much to expect my Mom (who lives with us) at age 76 to take care of my 61 yr old husband. At age 53, I certainly expected to work much longer, and we are suffering financially. However, after waiting all my life to meet this man, I am content with my decision. It is a very personal decision, but I am quite sure I have made the decision that is right for me and my family. Not everyone agrees with me, but I have asked for all to respect my decision and those who do, have reached out to help us. That was an unexpected blessing. I hope you all take the time to do what is right, you will know in your heart and gut what the right decision is. Just stay quiet and listen. Arms around Susan
Susan-you're right. The decision is yours. It is also your right to change your mind at any time. Enjoy the time you can have together but have a plan for the future. Nora
I gave up a good six figure job, with all the benefits over a year ago. I do not regret the decision. I had made some good financial decisions in the past that will allow me to take another year off. I will have to go back to work next year. I will have to change careers so that I will not be out of town. I am working on getting my realestate lic. I your situation is different and 6 months more employment will result in a good benefit.
Have you spoken with your HR benefits department to find out what the cost of retiring 6 months early would be. Some of the benefits may be pro rated and the cost would not be that great. I was only with my company 2 years and I would have had to stay 3 more to be vested.
I read this thread a while ago and am just getting back to it, so please forgive me if I've repeated anything someone else said. I retired early 10 yrs ago to take care of my parents, so when dx came along, my working/not working wasn't an issue. For those of you contemplating the decision--here's my advice. Keep working and if you can afford it, send your LO to adult daycare. My husband has been attending 2 1/2 years, and I think it's one of the reasons he is holding up so well. Left to his own devices at home, he would snooze or watch TV. This way, his brain is stimulated 5 days a week at the daycare, and I handle the rest of the time. Having a job/career you enjoy is a wonderful respite to dementia caregiving, aside from the economic value. So, if you have good care for your LO, it's a win-win. There's still plenty of time to spend together in the evenings and on weekends, and you'll be in better mental shape to do it if you get a break from it during working hours. End of lecture!
I have continued to work full-time and am very glad I did as it has been my sanity lifeline. I had the problem that my DH was too young and active for a day care and that he was never into group activiites. I did have someone come and stay with him during the day when he could no longer handle being home alone all the time while I was working. This worked out fairly well. When I could no longer take him on errands with me on the weekends, I had someone stay with him 1/2 a day on Saturday so I could run errands, grocery shop, etc.
Early on, he and I had done the math on pension and realized that the longer I could work the better for me in the long run. As it turns out, it was a very good choice given what has happened with the stock market. My continuing to work now that he has been placed has also helped me by giving me something else to think about.
Giving up work would also have isolated me a lot more as I only had a very small out of work support crew. We were not involved with the church or other groups could have filled some of the gap.