Hello all. I've been absent for many many months. Dear Wife's worsening condition just takes me down. Late stage six now otherwise very healthy. I'm doing this completely alone. No family to help, only once a week time off (3hrs) at the community center. I feel the path before me is suddenly becoming steeper. Have lost my "handle-it" attitude. Have finally fallen off the love/care wagon. I'm in the midwest in a strange town (hers) and just can't get time away. The big question is this: I'm drowning in this stuff and trying to save myself. We have income/assests to manage monthly expenses but not a "Benjemin" more. We don't qualify for any assitance and I just can't see anyway to place her. She has medicare, I'm younger and self insured. I see absolutely no way to catch a break and after seven years non stop I'm really struggling. I've spoken with many of you hear mostly last year but need help. I can't see getting through the next stage. Severely depressed, seeing a therapyst but lost. There isn't the means to pay for hourly care. Just plain lost hear. I've hit my personal wall, lonely and depressed. Thank you in advance for any advice. I'll stay tunned for any questions or clarifications.
Your family doctor and a Social Worker will find a way to help you out of this hole. Let them know you are desperate. No stiff upper lip. Just tell them they'll have two patients instead of one if they don't help. Start immediately, like tomorrow.
mary75*: I neglected to mention, that I went through the lengthy process of applying to the state for assistance. It was a long drawn-out effort, applications, more and more questions. At the outset I told them I had income and assets but not enough to go beyond daily living, certainly not enough for an emergency. They declined us. It's all in my name, my wife has little at this point in her name. They shut us down.
Have you consulted with an elder law attorney and the local Council on Aging? In our area the Council on Aging is the clearinghouse for all services. We've gone through several caseworkers there, and they have all been very helpful and willing to search things out for us. And an elder law attorney can help you figure out what to do with your finances so you can qualify for help.
Please don't delay working on this. You sound like you are very close to the edge. Take a deep breath, and then start making calls. And if the first person you talk to doesn't seem helpful, talk to somebody else. Talk to their supervisor if you have to. Just because somebody works somewhere doesn't mean that they know all the answers. Sometimes our case manager didn't know all the services that were available, but when we asked about something and she checked, there was a service provided. She was as surprised as we were! The Alzheimer's Association also has a social worker that can help you find assistance. They work specifically with this disease, so they should be a good resource.
Please don't give up. There is help out there. It may be a little slow, but it will come. And keep asking questions. I had to make quite a bit of noise to get help, but it was sure better than continuing to scream my frustration into a pillow!
Jan K: I'm given to believe you did get help? I'm grateful for your reply. I've had a note given to me by someone sitting on my desk. It's a contact re elder care. I'm going to dig in tomorrow. I'm afraid I've delayed far too long. It's such a dark place to be in this spot. I'll be ok. I already went through the "I don't think I can make it" phase. Was bad. I just want to get to the other side of this but it seems so far away. I've already developed a medical condition that was my first and seemed to flow from the severe stress some years ago. I just want to make it past this now. Empty of all emotion these days. Thank you so much.
soolow, when you go take notes and review at the end with the elder care person that you have the points right. Make sure you take paper and pen. And verify who you can call if you have any further questions and make sure you have that name and number. It's clear this is tough on you right now but getting advise from a professional sounds like the right thing to do and you'll want to come back with those things in your hand for when you have time to think.
soolow, i agree the time to consult a professional elder law atty has come -if you cant afford one call your local state bar association and ask for a probono referral - they will be able to guide you to what is available and how to acheive getting your dear wife and you the help you need. yes its a drawn out process and maybe having waited too long to get the ball rolling but its never too late so take heart that you still may find the needed help with guidance from a good atty. your state agency for the aging may also have some info that would help get her into a day care program based on what you can afford to pay. get on the phone and start making calls -one call will lead to another source of input. its tedious but also the local alzheimers assoc may have leads as well. you do sound stressed out but remember we must help ourselves to overcome. dont give up, put those mental processes to good useful use. you will find you may qualify for more help than thought. good luck, we are all pulling for you ! let us know how its going. divvi
soolow--I know others have had less than stellar experiences with the Alz Assn, but our was completely positive. I second the suggestion to call them (each local chapter has a hotline) and find out about a support group, as well as the elderlaw info. You sound as if you are in crisis mode and an in-person support group might be a big asset. If your wife has a younger-onset dementia, see if there's a group tailored for that. I took care of my husband, at home, for 7 years and I know how long that period can seem. But I had an adult day program and in-home aides to allow me respite; with only 3 hrs respite a week, I'm amazed you've made it this long.
We hear you...and we want to help. Don't know how far along your dw really is. You say stage 6, but some factors seem to over lap in the stages. Have you talked to her dr. for a referral for evaluation by hospice. You don't have to be on your death bed to have an evaluation by them. They have wonderful social workers that know all the ins and outs and things you might not even thought of. At least they are someone to talk to and even if your wife is not ready for such an evaluation maybe they can send you some litature that will help you.
A heartfelt thank you to each of you. Today, I've had some interruptions but have begun to search online for contact numbers for Alz. Assoc, state bar assoc for pro bono referral. I'll keep the ball rolling. Very grateful for your ideas. I've been part of a support group but in our very small town in western Minnesota its a mixed bag. I go when I can. I find it to be very sad. Pressing on here. Thank you! I am glad that I could come back here for help.
HI soolow, the next time you "go missing" I will put out an alert here on the boards! Good to see you back, though I am so sorry it is so tough for you.
My mate has really gone downhill too, I think the middle stage 6. Unlike you, I have a little more support, though I had to fight for it. Also, our income was low enough to qualify for some of this help. I now get 10 hours a week of respite home care so I can go out etc,. I get equipment, depends, and all meds paid for. And it looks like, when, and if, the time comes, we will qualify for Medicaid.
Reaching out aloha to you all the way from across the big pond of the Pacific. Don't stay away so long next time. A big prayer of hope going up for you. Patty
I am in Minnesota the Twin Cities area, I used an Elder Care attorney that was wonderful she was here in this Area if you would like I can email you directly with her name and number? I did not have much in the way of assets but still had a home in both names and was still able get DH on Medicaid. Lots of hoops to jump thru. Did you say you had used an Elder Care Attorney? If nothing is in her name it should go rather smoothly.
Hello to all. I've been moving slowly. Will be setting appt. with elder attny tomorrow. Then I'm going back at the county to retrace why I was shut down again. The Alz. Assoc of western Minn was very kind but finally agreed elder law was the course. So I'm plodding along, seeing a very helpful therapyst. She suggested on interesting thought with me. Since my wife's family has been so unwilling to be helpful she thought I might try the "We need to have a plan for DW should something happen to me." I like the concept but truly expect little after all this time. Once again, before I approach this issue I want to have my ducks-in-a-row first. She wanders about the house muttering, is mostly agreeable all the time, but can't dress, can't bathe and is beginning to need toilette assistance and her balance is worsening. I understand little of what she says and so on. The changes seem to come every several months. She is otherwise in perfect health. I'll pop in and update as I'm so grateful for your thoughts.
Glad to know you're consulting an elder law attorney -- I just did and feel better about planning for the future, although my DH is still very healthy and actually continues to function quite well. I so admire your care for your wife -- take care of yourself -- you will survive.
Soolow, I think I may know who you are. But I may be way off the beaten track. I went to an Alz. group meeting for a while and the leader is super nice and beautiful on top of it, but I felt restrained in what I could say there as I had been a teacher and there were people I had had contact with before.. This venue is So much more informative and anonymous..Had your wife been a teacher out west?
Soolow, My wife was not long ago at the same stage as your wife almost exactly. You said your wife walks allot. My Wife walked around the living room at least ten hours a day carrying what ever she could hold in her hands. The result of all the walking was great weight loss. When her Neurologist referred us to Hospice. Hospice said that her Alzheimer's alone would not qualify her for Hospice at that time but her Alzheimer's together with her weight loss did.
If and when you talk to Hospice make yourself some notes to make sure you tell them everything. Sometimes we don't always remember everything at the moment we need too. Also make sure you tell them about her weight loss if she is having any.
Soolow, I don't have any practical advice since I and my dh have only knowingly been on this journey for a little over a year and I am still adjusting to him being immediately retired and doing mountains of paperwork for private and socsec disability but I want you to know I feel your pain and maybe sharing can ease it a little.
So, Soolow, why haven't you popped in to update as you indicated you would do on Aug. 18? I'm sorry if I sound like I'm calling you to task, but all of us are concerned about you! I'm in a scary place right now too and don't know how or what will happen with him or if I can get him placed. I think it's time.