Hi all, as I was warned, Jim did take a nose dive as far as his mental and physical status, after last weeks hospital stay for his B/P and Pneumonia. He was feeling awful yesterday, so I called the dr and took him back to the ER. He was admitted on an Observation Status. Lots of calls were made and we discovered that he qualifies for Assisted Living, which we cannot afford, and does not yet qualify for NH. A Gould Assesment will be done sometime soon. The VA Home in Augusta has a Nursing Bed available but that is 2 hours away and I don't want him that far from me. So for now I am reaching out to all the agencies and trying to get as much in-home support as possible. There is some confusion as to how much of his disability check would be taken, and more confusion AGAIN over whether Dylan whom I have Permanent Legal Guardianship of, qualifies as a dependent! So for now we are home, he has his walker, I've used our camping stuff and set up a kitchenette in our livingroom with his comode in our bedroom. Those two rooms are on a lower level and I don't trust him on the stairs, his gait is really off. Until then we will be joined at the hip. Stuck in two rooms. I can walk him out the back door and around to the front porch where he loves to sit. His prognosis is only about another year, I don't want to place him and then go to work to support us, I want to be with him while I still have him. I can go back to work later. I want all the time I can get with him. Sorry If I'm rambling, I'm so overloaded and stressed. Hugs, S
Susan L, big hugs coming to you with lots of positive thoughts and prayers for an ease in your load and a lessening of your stress. We are all here for you, ramble often, sometimes it helps just to talk about it.
Susan I can feel your stress and sadness, yes hold on to the rope, take a deep breath know we are here for you ((((((((((((((hugs to you and Jim)))))))))))))))))
Susan L, I'm tying knots as fast as I can. I'm so sorry. You have enough responsibility on your shoulders for a half dozen people. It would be a miracle if you weren't stressed. We all have arms reaching out, holding you up. Bless you.
I DO wish we all lived near each other. So many times I just want to run over and take charge for you so you all can go just sit down or take a bath or get into the sun. Tonight is one of MY nights, with husband talking about all my boyfriends...oh, brother. I thought I'd let that stuff not bother me anymore. Oh, well. Hang in there. It sounds like you're doing as much as you can. I want to keep John home as long as possible, too. Better for him and myself, I figured. The visiting nurse told me today that I sounded and LOOKED a lot better today since last time she saw me. Yeah, a LITTLE stress has been relieved. Have patience (as so many have told me), I know that all your legal issues and questions will be resolved soon. Take care of Dylan and don't worry ..... easy for me to say, but really try. Love, Jen.
SG, tell John that if you had all those flippin boyfriends they'd be out doing the yard work for you!
I have to hire someone to cut and trim our lawn, don't know where that money will come from. I've thought of selling, but apartments/condos would cost as much as our mortgage. Plus it would confuse Jim and be hard on Dylan. Oh s^%t, I just don't known, I've even looked into astrology to see if I was born under all the wrong stars or something. This life has been tough. Doneit, the only thing I have to look forward to IS the wedding. No stress for me. The "kids" are handling it all. Whatever I help with is a joy.
Jim's two brother's and their wives and possibly his sister and her husband may all come the week after the wedding, stay in a motel nearby and try to visit with Jimand give me a break. God Bless, they are coming from Louisiana, Wisconsin & Minnesota. Courtney will be taking Dylan to her house on Weekend Days, and will be staying to help after work on her early days. We will watch Diego so that Dylan has someone to playwith. We don't have many neighbors and none with kids, so that is working out.
My Mom starts her Meds tomorrow for this MAC Infection that she has. She will take 3 meds (10pills) 3 times a week. There is the possibilty that she could have some tough side effects the following day, we are praying that she is not among that % of patients.
Will keep you posted, Oh, I heard from the VA Social Worker, 6 hrs a week is the max a Non-Service Related Veteran can get. So onto other options. Thanks for the rope, I'm grabbing for it and may try to smoke it, so if you look up and see puffy clouds, thats me.
I just wish wish wish that I was a multi millionaire and I could send every one of you big checks every month to make your lives more bearable. It would make me the happiest person on this earth if I could do that. It seems that everyone's stress could be relieved enormously if we just had enough money to hire another pair of hands and eyes to help us keep them home, or afford a proper place for them to go for more intensive care. When I read about some of your worries and stress, I want to make it be all better. I truly care about all of you.
Nancy B!!!! I want to tell you that I truly appreciated the telephone message you left the other day.....but, somehow, the button for 'erase' got pushed and EVERYthing was wiped out, everyone I needed to call back, even on my 'notebook' where it keeps a record of all the phone calls. Could have something to do with power outtage, too, I don't know. Please look up my e'mail and let me know your telephone number,.please? Jen. Thanks for thinking of me....
Doctor had me increase Seroquel to 150 at bed to see if he would sleep through the night. He only woke up once instead of 3 or 4 times! He was dazed and confused, but we managed to get him on the pot and back into bed pretty quickly. He got up around 5, turned on the coffee in his little "kitchennete" had some cereal, then dozed in the recliner until I got up at 7. I need to get a second gate for the stairs. He knows not to go up unless I'm with him and that he CANNOT GO DOWN them at all. The Gould Assesment People called and of course I was helping him dress and couldn't get up to the phone. Aghhhh. I called them back but haven't heard from them yet. OK. Arms around you all, SuSAN
If your husband has a prognosis of a year you may look into help from hospice. Here in SW Florida Tidewell Hospice has something called Transisions program which offers support, friendship and respite for families by trained volunteers. Hospice in other areas may have the same type of service.
Susan, My thoughts and prayers are with you. I know that I will be in the situation soon. Please if you can get 6 hours take it. You will need to keep your wits about you and 6 hours may help do that !!!!!!!!!
I had not thought of Hospice......I will check into it. A Gould Assessment (at least here in Maine) is an agency that comes out and determines at what stage the patient is in and if with enough help can be managed at home or needs placement. They go over the options for care and the financials. In my case they work to make sure Dylan & I are not left destitute. Today I spent all morning calling agencies trying to find help, my washing machine motor died and I need a new one. Found out that the same people who do the Fuel Assistance Programs will provide appliances for those in need, disabled etc. We qualify, but the program doesn't open up until August! I can't afford even the least expensive model so am renting one aghhhh, I hate to waste money on renting, but that's all I can do for now. Boy, life just keeps getting suckier. Oh, I did get a lead on a foster Grandparent Program for Dylan, that have volunteers, don't know yet what the wait is, Big Brothers is really long. I'm also in the process of an application to reduce my interest rate to maybe 2% and extend my mortage to 40 yrs from 30. That would be a huge help. I finally started asking, humbly, but asking for some financial help. With no one in this house able to work, it's tough and SSDI doesn't cut the mustard. Thanks for letting me ramble. Arms around, S
Susan, you are in my thoughts and prayers. Hopefully hospice can help you out. Can you get out of the rental agreement in August and get a washer then? I hope so. I hope the Grandparent Program werks for DYlan. THose are very good!