SO hard, just to take months off from my work, and I will be helped financially during this period, with a bit of cash my departed sister promised to me, to get me through this part of the journey with Dado. She knew, as she was dying, that her sister Patty works so hard for so little and carries too much pride to ask for help.
For those of you that follow my posts, you know I do a weekly Farmers market, and that I did take the month of August off to catch my breath. The time off was very good to be home, catch up, spend time with him, and actually rest a bit. HOWEVER I panicked at the loss of income!
But there is no excuse now as they are going to send monthly cash until I can return to work.
I just fret and tear up anyway, to miss my work, to give up my space at the market, though I know I can get it back in the New Year. Yesterday I raked in the customers, despite it being a very slow month, they clamored for the wee gourd ornaments and I made over $300. (alot for me)
and, even if I am not there, I can stop in to visit when I am around in town shopping.
I have had my little business for more than 25 years, it is just small and silly, but I love it.
The reason for taking a break---I CANNOT TAKE CARE OF HIM< AND< do it all. I cannot, I am trying and it could put me in the grave before him. As I am not ready to place him , yet, then I thought take this next few months, accept the financial help, enjoy the myriad of girlfriends coming soon, catch up on projects, and enjoy him for as long as I can. I would be very surprised if he is not vastly changed even more by the end of the year.
We are signed up for Dec. 3 through the 10th for our first attempt at respite at the VA hospital in Honolulu. It is all paid for, though we have to spring for the flights. I will have girlfriends here then that want to treat me to a mini Hawaiian vacation.
(JudithKB*..you maybe should come to Hawaii you said you wanted to travel...really nice oceanfront condos in Kona for very reasonable..just sayin'...)
SO WHAT DO I WANT ALL YOU TO DO?? lol Just TELL ME to do it, take the time...get over it I will not lose my "career"
COCO--I was faced with a similar situation in the mid-1980's. I fretted and stewed over whether to stop working and go on Disability, or not. I was working full time; a wife, a mother, and a homemaker, and it was gettig harder and harder to do it all, let alone maintain the level of quality I expected of mself. I finally asked my Dr. his take on the idea. His answer made everything fall into place. He said, "You have a limited pool of energy to use each day. You can't do everything, so you need to decide where the most important places are for you to expend your energy." I quit working--but it wasn't failing. I was home when my Daughter came home from school; helped with her homework.I was here when DH had his Mental Breakdown and I began Caregiving. Eventually, I did take on some part-time work from home, for about 12 years, after my Daughter was in High School. What they say about one door closing and another opening is true. Nothing says you can't keep your hand in making the gourd ornaments to sell in the future. Only you can decide where you need to spend your time and energy. When things change, you can always change your plan. The mainthing is to make it the best plan you can.
My dear friend....Coco....you are at the same cross roads I was at prior to Jim taking the rapid down hill slide.I I knew I couldn't continue on caring for him because I didn't have the physical strength and I knew he would only require more and more of me physically. I worried for weeks, shall I spend a great deal of money (and then what would I have to live on when he is gone) and place him in an ALF, should I consider a nursing home (would he even qualify for one), should I hire more help and keep him home (also costing a great deal of money) or should I look for a cheaper place like a Board and Care? What a horrible position for any of us to be in...why, why, do we have to face these heartbreaking decisions?
I've always believed that we will not be given more then we can handle and if we can just have faith and trust the decision will be made known to us. And, my decision was made when Jim got so much worse so fast. I then knew I would keep him home until the end and I will always be glad I was given that chance to care for him until the end. At the same time, I know this is not for everyone and I knew it would only be a matter of weeks or at the most a month or two.
I also had respite planned for Oct. through Hospice. Needless to say, I will not be needing that respite now, because I am on permanent respite. Many of us have been given this burden to carry because we are strong and we will find the way. The way maybe different for each of us...but, have patience and your way will be known. Your career will continue and you have many, many years for that career. I do understand the fellowship you enjoy from having your Sat. place...I use to do that years ago and I loved doing it. If you can't continue to do the weekly work on your crafts and candy while taking care of Dado...then use this time to stock up so it will be easier for you when you take back your site. You are stronger then you think you are and I know you need this outlet. Don't give it up. The worse Dado gets the easier he maybe to care for. Jim got easier and easier except for the physical part that I just couldn't do. But, then the VA and Hospice provided me with the help I needed. Just take a deep breath and trust me the way will become clear to you when you least expect it. E-mail me any time you want to and I will be more then happy to answer your e-mails.
Go for it. It sounds like everything is in place. You recognize that you cannot do it all and you have an opportunity.
Afterwards you may be able to reflect and decide what is most important. I think you will need to return to the Farmer's Market for your own sanity, it is something that gives you joy. I think my FIL got relief by caring for is 25 head of cattle while caring for my MIL.
Coco, I left my part time job of 32 years last month. It was one of the hardest things I had ever done. But already I feel more rested and better able to take care of DH and DD. We have a small amount of savings in the bank. And my sister said If something happened to me that the family would use the money to care for DH and DD. So why not use it myself. And that was what made me take the step.
I have enjoyed DH more in the last few weeks. I am glad I did it. And later I will find something else to do.
For now, enjoy the time with Dado, and your girlfriends.
coco, this time to spend with your sweet Dado is so very precious. only too soon they are taken to the point of no return and then they do not know us and are in their own isolated world where we can not go. you will never regret taking some time off to be with him while you can. it will make the longer road ahead so much easier knowing you gave him the attention and love he needs while still with you. placement may come sooner than expected, and knowing this it makes much sense to take your own respite away from the work -knowing you will one day return to your favorite pastimes. life is so short, and we must savor the memories while we are able. divvi
Mahalo..thank you...tears in my heart as I read all these. Yes I will do it. It is just work. He is real, so much more than a job, and I know this would make him happy if he could understand.
Coco, I had to give up my full time job August of 2010 because I just couldn't leave him alone anymore. How I lasted that long, I have no idea!!! I worked midnights because I hoped he would sleep all night, but looking back I think "Oh my God!!! What if he had gotten out in the middle of the night????" My mom passed away in 2008 and left me enough to add a third floor to my house so my daughter could move back home and I could quit work. We still have to scrape, but I figure God will make it all possible. And I had gotten to the point that I was so exhausted I was sleeping away my lunch hour on a hard bench at work. Was time to go!
Coco, you will always have your work to return to. It's such a hard transition at first, it adds to the sense of loss we all feel as we watch our pouse decline. Like many others, I too had to quit work when it was no longer safe for dh to be home alone. I probably should have quit 9 months before I did when I look back at his behaviors back then. And yes, it is a financial strain and some days I don't know if there'll be any money left for me to live on. But I've chosen to take care of him.
Lovely about your husband's ashes FayeBay* He will be floating in freedom in our nice warm air.
I am going to be dropping out of my work in about three weeks. If I was not so anal, I could do it NOW as there is a wire cash transfer waiting for me. How blessed am I, finally, the love is coming through, and I should be able to take up to 6 months off work if I need to, with the amount they are sending. As I said, this was my sisters dying wishes for me, not to set me up with a lovely savings account, but to help me through the real tough times with Dado.
And, if it keeps up, he will be so changed in that time. Today, his legs would just not get going, I had to hold the door for him and wait for the brain leg connection to get them moving. It is like they are stuck. His eyes run constantly, and he can barely talk .
thank God the family came through, my brother in law.
Coco...I am so glad for you. You will be so happy you have made the right decision. I feel so blessed that I was able to see Jim through this horrible condition to the very end. I have no regrets and I know you will feel the same way. Like I said, you can continue to do some of your creative creations and just stock pile them for future use.
Not only did I quit work now almost six years ago, but I retired my license to practice. So, unlike some here who have more wisdom than I do, I left myself not only without work but without opportunity to work. If I hope to continue I face time and cost factors that would literally take me a decade to "fix".
In my opinion, I did myself a great mistake.
You though, are different, you have a talent and a craft that I don't have. You CAN go back. You also have a reputation, a client base and friends.
You are smart, perceptive, and have so much ahead of you.
I pray for you that when it is time for you to look back, it will be with few regrets. You have written so eloquently about your sister, Diane, and what that relationship continues to mean to you. I know in my heart you will do what is best for Dado and for you. My confidence in you will never waver.
thanks abby that was so sweet. I know I can go back, I am just a workaholic and I love the interchange.
I have 3 more weeks to do market, maybe if I can handle it. Then I am taking at least 4 months at home, and getting help financially as I had mentioned, due to dear Dianna my beloved sister in the heavenlies.
QUESTION>>>>My sister Linda was on the phone with me today. I told her how Dado cried when he could not get himself in the car yesterday, he was so frustrated. She remarked, well that does not sound like something someone with dementia would do, to be so aware of their suffering?
(Of course he forgot about it quickly)
Do many of you see your mates get frustrated and sad? And cry?
My wife gets frustrated and sad and cries at times. She has FTD and one symptom is lack of self-awareness, but that is not always the case. I know people with FTD who are aware of their problems (perhaps not as aware as they think). So while lack of awareness is a symptom it isn't always the case. L realizes at times that she can't do things (perhaps on her better cognitive days). On the other hand she rarely shows any insight as to how her dementia affects other members of the family or the burdens I carry.