I am considering the big decision of retiring from my full time job to take care of my husband who has stage 3 AD. I had hoped to be able to work 4 more years to full retirement, so that I can support myself in my old age, since my husband is 18 years older than I.
He is needing increasing supervision, reminders to take his medications, which included insulin, and is loosing weight from lack of appetite. He is increasingly argumentative and wants to stay home in his pajamas all day long. Reminding him to shave or bathe starts an argument. He requires a driver and someone present to take him to his many doctors appointments. He cannot find his way around the kitchen to get his meals, and is constantly loosing things with loss of short term memory, and even some long term memory.
He is fearful that I will leave him or put him in a "home". He makes me take a cell phone when I walk the dog, and calls me up to 16 times per day when I am at work. I am burning out, and concerned that if I quit my job I will resent him and be even more unhappy than I am now. I presently do not have any additional caregiver support. He refuses to look into daycare. I had meals on wheels, but he made me stop it. He prefers to be totally dependent on me, which is stressing me out. Any advice?
Mac--I think you are jumping the gun at considering quitting your job. You have other options. Please keep in mind, your DH doesn't get the deciding vote--he has AD. In home help is possible. Introduce it as helping you taking some of the load off you. He may not like it at first, but he will adjust. Fiblets may help with that or any of the following. Day Care. Some present it as a place he can work, or volunteer. Can you possibly arrange to work at home, or on a modified schedule? What about a bit of Family Leave time to get his Dr.appts and care taken care of/arranged? You really need to think through your options--for your future and his care. Check with your Area Agency on Ageing and find out whatis available.
Carosi* gave good advice. You don't say how old you are, only 4 yrs to retirement. If you quit now, would you plan to ever go back to work? If so, it might not be so easy. Being a 24/7 caregiver is daunting, to say the least, and you say you are already 'burned out.' You will have to work around what he 'prefers.' You are in charge--fully and completely. Start telling lies. Your goal is to keep your physical and emotional health--as much as possible. Tell him YOU need help for whatever reason, make something up--it's not for him or about him. He fears having anyone around, even meals on wheels, because he fears you will abandon him, especially so if you are leaving him alone all day. It sounds like he needs more hands-on supervision. Call the Alz Org, as well as your Agency on Aging (it'll be in the front of your telephone book, listed under one form or another.) From what you describe, it sound like he's beyond stage 3. Sooner or later you will need more help, if not placement--these are not HIS decisions, they will be YOURS! Quitting your job will not make your life easier, in my opinion. But the decision is yours. I send you strength and understanding.
"I had hoped to be able to work 4 more years to full retirement, so that I can support myself in my old age"
THIS IS A HUGE CONSIDERATION! I agree with Carosi, do not do something now that you will long regret later.
I am 54 (wife is 62) I have no idea how long she will live. I have thought about what it would take for me to retire. Would I EVER leave early to care for her?
Currently I pay $2000 a month to have people stay with her during my work day. Currently her SSDI covers this cost (THANKFULLY) so we are living on just my salary. But even if I have to spend more of my salary to pay somebody else to care for her I would do it.
As long as I am working I am earning benefits (healthcare coverage is priceless!) I am earning a pension. (my job still has one) but even if I did not I would be earning credits towards SS or contributing toward an IRA/401k. DO NOT take these things lightly!! What you earn/contribute now may make the difference later between being able to meet your monthly expenses or complete poverty later on.
I also DO enjoy my time away from her. I have her 24 hours Fri, Sat & Sun, by Monday I am ready to have somebody else listen to her cry for a few hours. The end of dementia is the same for everyone, your job is to make it so that YOU can survive!
Again Carosi is correct he is not in charge, you are. You may have shared lots of things in your marriage but as this goes on longer his opinions and ideas and (irrational) wants become less important for you to consider. You know what needs to be done, he cant comprehend it.
Totally dependent on you? Yup, they certainly are . . . . And (sadly) they only become more so.
My stress relief? is to let things go as much as possible.
Bathing is great but as long as she is not too stinky, she can miss a day. I do not expect her to make a meal, she eats what I give her. If she doesnt eat a complete meal and snacks on junk food later? Who cares? If it shaves a few years off her life that is not necessarly a bad thing. When she called me at work all day? She ended up on voice mail many times. I knew nothing she had to say was really important and if she did leave many messages she would have remembered only a few. It bothered me more than her. Arguing? In my situation her angry statements are only in her mind a few moments and I just introduce the concept again a few moments later and she is generally cooperative. (BUT I remember to NOT betray my anger in my voice as that will make her angry) They take their emotional cues from you, IF you can act happy they will generally act happy. However this skill is NOT always easy to do.
All of this may sound cruel but like I said my job is not to be a cruise director for her but to ensure that I survive.
I agree with the suggestions above. Do NOT quit your job except as a last resort. I agree, it sounds like he is past stage 3. What works for some won't work for others. My dh didn't want me to go anyplace without him. He pouted every time I left - which wasn't often. I didn't make a big deal out of it and didn't tell him things ahead of time any more than was necessary. Like Carol said - tell him the help is coming in to help YOU not him. Fiblets are necessary when dealing with someone with dementia. My dh was more receptive when I told him Dr.____ said I HAD to get out by myself. Dr. ___said he HAD to do this or that. He respected the Doctore opinion more than mine.
Your job is not easy as a caregiver and getting another job after being off caregiving may not be easy. Having someone come in to watch him will cost - but not as much as giving up your job will..most likely. And, having the house cleaning done and kitchen cleaned when you get home is wonderful.
Very good advice from all the above. I agree it sound like your dh is long past stage 3. One thing you might or might not have considered is your work not only helpful towards your family in a financial way, it is probably very helpful to you in an emotional way. You have contact with others that are "normal". I was a stay at home wife for years and too old to be employed and I can tell you after just a few years of caring for my dh I felt like I was a prisoner in my own home. That is when I got a "cleaning lady"...after a few months and my dh began to like her I asked if she would be willing to come on a weekly basis and just putter around the house so he would think she was cleaning so I could get out and do my shopping or go some place where there was normal people. You probably can get good references from some of the other women you work with that have cleaning ladies.
Who cares if he doesn't get dressed all day?? No one is there?? Hospice only gives the people they see a bath 3 times a week. Also, remember you staying home will not make him better...there is no getting better with AD and he could get worse really fast and then you might want to consider just taking a leave of absence.
Everyone one is different and you are the one that knows him the best. We will be here to support your decision whatever that maybe. Good luck to you.
Have to agree with all of the above. Although it may seem so harsh, the bottom line is that he is not going to get better, and your role, if not now, soon, is going to become the total decision maker, who tries to help their DH adjust to the changes that WILL come. Anything you can do to introduce something new to his environment now, such as household help, daycare, anything... is of utmost importance to you. All is going to become more difficult soon, not to worry you, but to prepare you. If there is any way at all you can impose your will on your DH, even if uncomfortable, it will be easier now than later. You will be grateful to yourself. Maybe if you are stern enough to have someone begin to be in your home during the day, he will accept it when their time there is for a longer duration. Yes it will cost you, but your job, insurance, and retirement weigh heavily in your own life. Surely your DH would have not wanted you to jeopardize your own well being. Ask yourself what he would have decided for you. You need to remember that he can not reason this at this point. Please take care of yourself as you care for him. Please check the many resourses out there before you make such an important decision. Do the homework. Hugs to you and please keep in touch with us. We are here!
I retired from my job in 2008 mostly to take care of him but I now work from home and this job gives me the flexibility to tend to him. I agree if you like your job don't quit. Part of the reason I left was I was not happy doing what I was doing. In any event it may be helpful to take a pad and pencil and jot down all the possible options. You may be surprised at what you come up with. Surely one of those options will be the one that fits your situation. I have decided to place my husband as soon as I can and when I do I plan to again review my options. I have pretty much decided to continue working until I drop or health issues intervene. Take care and my best to youn
mac, I can tell you what I did. In 2010 I realized that I could no longer leave my husband alone. He was 60 and I was 58. I took a family medical leave which I was able to extend to one year and then I gave notice 2 weeks before that ran out. I had inherited some money from my mom and I used it to take him to Florida for 2 months where we stayed with my ex-sil. I bought groceries, cooked, cleaned, organized and went to the beach and drove around sightseeing. While I was gone, my sil tore the roof off my house and added a third floor so my daughter and her family could move home to help. Brett and Maria worked and the two boys were in HS. Now Brett is gone and one grandson is in the Navy. It was not an easy decision, but it works. It is not easy and there are times that I feel bad for Maria. When the boys were babies, she lived with us and Lloyd and I insisted that she stay home with the boys. I guess we have come full circle. I am sure that whatever you decide you can make work. Just give it some thought first.
I agree with those suggestions above. Hold onto your job if it's one that you enjoy, you'll need that normalcy. And as exhausted as you get with him calling you at the office plus the extra responsibilities and demands when you do get home, quitting work to take on caregiving full-time will be more exhausting - and depressing if you don't get some relief ... in my experience.
I introduced a caregiver as someone who was helping me do things in the house that I just couldn't get to anymore and when I found a day program that was interesting and fun, I told him that I got a letter stating that because he is retired, he is eligible for this Retiree's club, so I signed him up for it. Telling the fiblets was a bit scary to begin with, cause i've never lied to him, but It worked and now I'm pretty adept at it! Good luck to you.
I did quit my job. I had a small paper route. It was afternoons up until a year ago. Then they went to mornings. And for almost a year that worked. Then about 10 months into the new morning hours, we hit a problem. DH was getting up to early and opening the front door. My route went by our house and when I saw that door open at 4 am my heart jumped out of my throat. What if he walked out of the house, what if someone went in. That was it, for the rest of that month I had our 16 yo DD sleep on the couch to keep him from leaving. And gave notice.
I knew my DH needed more care. And finding someone who could work from 3 am to 7 am would be hard. And someone who I could depend on in a small town would be even harder. So I left my job. I was part time, self employed, no benefits, no retirement, and over the last few years the income had dropped. So leaving worked for me.
We have our DD still at home, and I want this time to be as "normal" as possible for her. So my reasons for leaving were as much for her as DH. She did not need to become the other caregiver. She does help and is very loving and protective of her father. And I want her to keep those feelings.
I know that Coco left her job too. She also was self employed and sold her hand made items at a farmer market.
Each one of us needs to do what is right for us at that moment in time. There is no right or wrong, just what works for us.
This was posted here I think and it is what helped me......."When you are faced with a decision, make the decision as wisely as possible, then forget it. The moment of absolute certainty never arrives."
I,too,was self-employed,had a lucrative antique business plus I was a seamstress. It got too much taking DH to shop,and he was into everything in my sewing room. I locked the doors on the shop and had to tape all drawers and doors shut in my sewing room. I miss both businesses,the interaction with the customers,but feel it was the right thing to do for DH's sake.I do miss the income and the upkeep on the shop keeps me stepping. I'm trying to look to the future when I can resume both(if I'm not worn out).Hoping everyone can make the right desision for their circumstances.
Thank you ever so much for your very kind and insightful comments, and for sharing your experiences with me. You have given me much food for thought, and I have reflected on each and every comment. Feeling so out of control in this situation, I have not previously considered the notion that I am actually driving the bus, or the idea that he takes his emotional cues from me. I have felt so helpless and manipulated by this disease. Flibbing is also a new strategy to me. I need to learn to think through my responses to his behavior, rather than just reacting, which has not been successful at all, and actually hypes him up.
Deep down I really don't want to quit my job. It's part of my identity, and after working my entire adult life, I'm not ready in my mind to give it up. Staying to 66 (I'm 62) will make a significant difference in my retirement, plus allow me to keep my health care and other benefits going until I qualify for Medicare. (Hopefully, Medicare will still be around, although just watching the news this morning caused me to wonder.)
I read the blog on "Emotional divorce". That, too, was insightful, and another coping strategy that I have not considered. In fact, we have a co-dependence going on here - caregiving, marital promises, and guilt on my part and fear, more fear, and dependence on his (One of you identified his fear, and that hit the nail on the head.) I need to find a way to keep this bond from strangling me. Another of you mentioned the feeling of imprisonment - wow, can I identify with that! Sometimes I feel I have very little personal identify left, and that I am the one with the disease, shackled to it, in fact.
I do feel sad for him, and grief for the loss of the person he once was, so full of life, robust, energized, and loving to be out and with people. Now he is frail, tired, angry, and afraid, facing a hopeless situation which is only going to get worse.
You are right, my dear new friends... Do I go down the tubes, too, or do I try to live? Keeping my job will be a means to living. Next week I will begin the new year with looking into "housekeepers" and "volunteer" organizations that he may join while I continue to work. Happy New Year to you all. You are better than Dr. Phil! Oh, and that Twelve Days of Christmas poem was priceless! It did give me a chuckle, and I haven't had one for a while.
As others have said, you have received excellent advice here. Making the decision to remain employed or stay at home is really tough, but I'll put in my two cents worth. As long as you like your job and it remains financially lucrative for you even after considering costs for outside help, then by all means, stay in your job. Full time caregiving is definitely exhausting. I was employed full time when my husband was diagnosed in July 2011. However, I lost my job the day after we received the formal diagnosis. There went the health benefits -- although we did stay on COBRA for 18 months. It took me another 10 months to find a job, which was as an independent contractor -- no benefits. The job was close to home and they were flexible when I asked to reduce my hours so I could take him and pick him up from adult day care one day per week. However, I just lost that job two months ago. But I have to admit that working close to full time and trying to maintain our home, plus all the regular housewifely duties was really taking its toll on me. So I feel better able at this point to manage my caregiving duties. But financially, it stinks. I will be 62 this summer and will be taking my Social Security. Even though its less than the full retirement amount, we need the money. Even if I could find something full time, my salary level was never at a professional level, so there would be very little change in my benefit if I return to work. Placing my husband in full time adult day care or having someone come in would not be worth it financially for me. I would spend more than I could earn for that service.
Good luck, Mac. Sounds like you're on the right track with your decision.
Mac, the word "Guilty" should not be in your vocabulary. Erace it now. When you are doing the best you can that is good enough. Go easy on yourself and you will survive this journey you are on.
Don't quit now...find other ways to get supervision/care for your husband. I quit at 58 and I regret it for many reasons. Besides as your husband's disease gets worse, he very likely won't know you. Think of yourself first and your future....unfortunately he most likely won't be around and you will need the additional income working to retirement age will bring. I agree with the others, if he's at a stage where he cannot be left alone he is more advanced than stage 3.
I stronely agree with LFL. Stage 3 is technically and medically still early of course every patient is a little diferent but I really think for many many reasons you still need your job. I wish that I was working because I would have an outlet.
My husband can still do things alone, though our college age son is home so there is someone to help him if he falls. I have hired a woman who comes for 5 hours twice a week, cleans the whole house, does his laundry, makes his lunch, helps him with his leg wraps after he showers. I don't plan to quit my job--I was someone who was very happy to go back to work when my kids were 4 or 5 months old, to be that part of myself as well as the mother part. If I wasn't cut out to be a stay at home Mom I figure I am not cut out to be a stay at home caregiver. I'm 57 and a year or two from the years needed for full retirement, but I enjoy my job and hope to work at least until 66.
Thank you mary75. My parents were liberal and I went to college in the Boston area in the mid 1970s, so I came to my understanding of myself immersed in the feminist movement. To this day I don't wear makeup or shave my legs. I have a somewhat older friend who is also a historian who has done some women's history, and we have talked a few times about doing a book on feminist caregiving. One thing that has been particularly hard for me is that I only agreed to marry with the commitment that we would share household and parenting tasks equally. This isn't what I signed up for! But I think we all feel that in different ways.
I was blessed to have a small bit of money left to me by my deceased sister, or it would have been really hard to survive right now, but I would have had to leave work anyway. And now, as I am dealing with the fire, I think about as hot as it can get, I do not plan on going back to work until I am able to soothe the trauma and shell shock.
However mac you have your retirement to think of, as I was self employed that is a different story. You know, I love my work, I have worked really hard all my life, but I am so glad to not have to right now.
Coco, did I miss 'the fire'? I scrolled back and couldn't find reference to it. Did you have a fire at your house? I hope not. I read all about your challenges and feel so sorry for all you are going through. I know how hard it's been for you, and applaud you for your inner strength and "Moxie". Somehow I just KNOW you're going to come out of this like the champion you are. There will be a 'morning after", trust me. n.
Oh Nancy B* I am so sorry! I was using fire as a metaphor for my life right now. !
Thank you too for kind words. Today is the first day I am not hacking and coughing quite so hard. I am driving every second day to see him at the hospital as it is just so far. Today is my day to go. Now that the New Year is almost here, oh how I pray and hope for a resolution to the Medicaid this week, so we can move him out of there to...? Possibly a Life Care Center in Hilo.
Anyway this thread is about work so enough about that.
Pamsc, no makeup or shaving legs for me either! Actually my legs don't even get hairy anymore since I quit shaving them. And as for the makeup, what you see is what you get. Don't anyone dare say TMI (too much info) with everything we discuss on here! As for the caregiving...I didn't sign up for this either!!! BUT Lloyd's cousin says God puts us with specific people for a reason. Our reason is that God knew I would take care of him. (Ok, God, giving me too much credit again! No thunderbolt, please!)