I invite you to log onto the home page - www.thealzheimerspouse.com - and read today's blog. I am wondering if any of you "go away" as I described in the blog. If so, what do you do to "go away"?
Sounds to me like you went on a weeks vacation. I know I have not had a vacation in over 5 years. Hour here and an hour there, that is about all. Solitaire is my escape.
I guess I would have to say after so many years into caregiving its become a habit of daily life for me. I take the time I need away to refresh and recoup but started that way late in the journey. which is one thing I advise newer members not to do. getting respite as much as possible early on, is imperative if you plan on caregiving for any length of time. and yes if you must hit the monthly grocery allotted monies for an extra day of a paid caregiver:)) been there don't that!. anyway you can slice a piece of time off for yourself is critical. but after all this time, I find I have a mostly ritual day and have grown accustomed to the humdrum of the same way of living. while in mid stages, I was too like the others who find themselves screaming and bantering for a way to find their own lives again and not let AD consume all your time. I do like to read and escape in a good novel and now since DH is bedbound, and naps a lot I canhave more me time worked in while hes quiet. and can be outdoors a bit more if the weather permits here at the house. it wasn't always like this. while they are able to ambulate was a trying time. joan I hope you and others find the resources and make it happen for a bit of time alone. and find a hobby that you enjoy even if indoors and unable to leave. releasing the mind fog of caregiving and letting the fresh air in once in a while does a great deal to get us thru the day. staying in touch with friends, via email chat or phone helps as well.
Oh Joan, how I can relate to what you said.....BUT I didn't “shut down” while he was still at home. I “shut down” after he went in the Veterans Home. I think I lost about a week too. I was fortunate that when he had to be placed because of aggression they took him. I completed all the paperwork & they submitted it to Medicaid. I actually wrote one of those credit card checks for his first month's stay (I couldn't really afford it). I started worrying about how I was going to afford everything & when I couldn't come up with an answer I just “shut down”. I guess I thought that maybe if I just ignored it, it would go away. So for about a week I just did the basics to stay alive. I knew that it was a real possibility that I would lose my house (no matter what they tell you, that does happen!) Anyway, I was fortunate that I was able to get a substantial amount from a term life insurance policy that gave me 80% of the death benefit of the policy because he was placed in an institution for permanent care. So I was able to pay off my van & credit cards & I (hopefully) kept enough to pay the taxes on it next year. BUT even with no bills beside my mortgage, utilities & car insurance & other monthly expenses, after paying for his care I might not have enough to meet my bills. So I am getting ready to “shut down” again.
I think it is a disgrace that they force the healthy spouse into even deeper poverty when their spouse needs placement. In less than 2 years I will be eligible for early SS - I may not take it yet, but at least the option will be there to give me some income since it looks like they will take his.
Joan, I have not been dealing with this as long as you have, but I know I was close to being clinically depressed in February, so I have had to pull myself up by the bootstraps and get on with it. Something I know you have done time and time again - you are a wonderful woman to keep going the way you have, no wonder you went away for awhile! I do need to escape from time to time, and since I can't do it physically, I have taken up reading again. I did think I would go back to computer games (used to love playing Civilization III), but after I tried the other day, I realized I wasn't into it anymore. So, I am reading. I am going through every book that is in our possession (novels, historical, biographies, fantasy) and reading or re reading. When I am finished a book, I donate it to the local thrift shop, for resale or give it to my daughter. There is a purpose in that as well - I figure that eventually I am going to have to move, so if I get rid of the books one at a time, now, they won't be something I have to dispose of later. I am reading books I have read before with a new understanding and awareness of the subtleties behind the story lines. I am escaping into these books like I used to escape into the Harlequin Romance novels when I was a lonely teenager. And the loneliness I feel now isn't much different from the loneliness I felt back then, so I guess its appropriate that I read. {{{{{hugs}}}}} to you Joan!
Ahhhhh, Dear Joan, There really is nothing any of us can say to help you escape the pain...except...for you to find some way to place Sid. Medicaid is a myth...beyond belief. Keep searching...and even if it is the not the place you would have ever imagined for Sid, it will get the process going. I hate to say this to you...but YOU have to do this...I am so worried about you. Having read all of your heartfelt blogs over the past (6 years...?) you are different...Sid is different... It is now. Call the hospital...maybe Sid could be placed by that route. Love to you, Robyn/Leigh
Oh Joan, I feel your pain. I finally totally shut down and pretty much had a "nervous breakdown" where I couldn't breathe and thought I was having a heart attack. After spending the day in the emergency room, I decided it was time to put my husband into a facility. Even though Medicaid is not perfect, it is better than you having to pay the entire cost of his placement and then your own expenses. I have totally navigated that whole system, so if you have any questions let me know. I am thinking of you and sending you strength... Shannon
All of our situations sound alike...we are so involved in the caregiving job that we get lost, lost to ourselves to the point when asked what would we like to do we have to think hard about it. We know one thing for sure, we want rest, peace and to be free from making decisions AND we want someone to take care of us for a change. Have you heard the ad on the radio with this woman who starts out saying " Every morning I get up at 5 to give dad his medicine, at 6 I fix breakfast, at 7 I shower, at 8 I start the laundry, at 9 etc and then it repeats again and again and again....that is the story of our lives. At first there are the questions about this disease as all have experienced when we first get the DX. Then the slew of doctors appointments, all the errands etc. the driving, and then we move to the new realm which dawns with the poop and piddle issues, the stares, the lack of meaning conversations, walk in a room and say a greeting only for it not to be heard......and people wonder why we get depressed! I think if it weren't for this place where we can share and talk, we would all go start raving mad.
If anyone can solve the situation you find yourself in, we know you can. As our daughter would say ... "deep sigh." Just hang in there, Joan, and reach down deep and do what needs doing. For me, my escape is and always has been writing.
Your blog this week nailed it for many of us. It's overwhelming....so much too do...so much too handle....too much stress....so many details in dealing with medicare, government, and bureau "cracy" assistance, but so little help. God, my heart aches for you. I haven't approached your depth of the abyss, but I am sinking in level by level inch by inch hoping that I can survive this journey too.
I don't have the words to say to comfort you, I don't have the advice to give you; however, what I have is prayers for peace, comfort, and wisdom. May God provide you wisdom and open doors that are closed making provisions available for Sid.
You have given us much on this message board. Your sacrifice will someday be rewarded. Your dedication and time has touched and blessed so many lives. So many unknown faces and names, but always touched by you, Joan. We are all traveling this journey..this road at different stages, but in the end we all arrive at the same destination. You have helped navigate us though the turbulent storms by providing this outlet.
Now it's time for you to step back and take care of yourself. I know this is alien to you, because you are a giver, but please allow yourself time to rest and allow others to help you. They will be blessed as you have been blessed helping others.
Please be gentle on yourself. We love and appreciate you. We will be here for you. Thank you Joan for so very much!
I "go away" every time I have 5 or 10 minutes to sit down. I have a hand held Freecell solitare game that I can use to totally tune him out. He used to get really angry that I could just ignore his complaints and be so absorbed in the silly game. In the evening, after I have read every new message on this board, I play Spider on the computer.