I have taken some time away from this site, partly because I can't navigate it very well.....see the comments but can't find the responses!
We've had a great 80th birthday trip to CA for my husband, and now we are back home, same routine, same thing every day, my husband's recent memory has taken a hike, so we have no conversation because he can't remember what I said 5 minutes ago. My children, who gave us the trip, have gone back to their busy lives, and I feel as if I have no one to talk to. People only want to hear about it for a while. We are not going to have the finances to go to a nursing home, and so I don't think about what's next because it is so frightening.
This is the most awful end for a thoughtful, insightful man, and I spend more time yellling than is good for either one of us. We should move but the real estate market has plummeted, and the thought of putting all that together just makes me want to close my eyes and shut it all out. Well, that is where I am coming from today. This disease is a fate worse than death.
Thank you for listening.
The following 2 users give hugs of support to: dancyn aras (10-06-2011), ninamarc (10-06-2011)
Dancyn, I am so glad you had a wonderful trip and yep, there is a huge let down when you get back home. Nothing has changed, it is all as it is. Just don't give up or give up.
I am sure the trip was difficult for your husband. Anything new and different presents a unique challenge for the cognitively impaired. Routine is his friend at this point. As for conversation. It may be one sided but it can still be. My Mom has very limited ability to comprehend or communicate beyond the memory issues. I still talk to her. I tell her whatever I need or want to tell her. Sometimes she gives me gibberish back and sometimes she gives me nothing back. Then there is that rare connection, in a moment of lucidity, when I get back an appropriate comment. Those are worth all the words that it took to get to that one three word sentence. Then we start again. Mom seems to enjoy this, as I do, even if there is very little true communication or even understanding.
As for the kids, call them up. Don't wait for them to contact you. If you need their support, go after it. Beyond that check with your local Alzheimer's Association and see if they have a support group that you can become a part of. They may even have a volunteer that will pair with you. Those that are not touched by this disease do tend to shy away but if you can find someone that is in your situation locally... it's a gift and a blessing for you both. You truly need somebody that knows what you are dealing with and understanding what you are feeling.
And you can always come here Each of us have travel along the same path as you are on. We do understand. I understand. There are days I wonder if there is anybody else out there. Then I call my daughter, reach out to a few friends I know who are also care givers, or come here. If we let it, this disease will totally isolate us. It is our job not to let it do that. So please reach out as you have done here There are so many, just like you, that would welcome a warm smile and gentle conversation.
Please don't forget about Medicaid. If you can not afford private pay then there is medicaid. Half the assets you have are yours and half are his. You will not have to lose your home. But what you need to do now is to contact a good elder lawyer that is familiar with medicaid application and find out what you need to do now. No, you do not have to eliminate the possibility of facility care. If he is a veteran there may also benefits there. So don't just give up but find out your options
We won't even mention the housing market Right now we are trying to sell Mom and Dad's home as well as our inlaw's home. It is definitely not a good time to try to sell a house but it's not impossible. It's worth checking into. Just be sure to sell before you buy!
Hang with us. It helps to have those that understand to talk to. Remember to take care of yourself physically and emotionally. You could even ask those busy kids to stay with Dad long enough for you to go out for an afternoon
Hi Dancyn - So sorry you're having a difficult time. I do, truly, feel your pain. Those of us walking this road understand eachother like no other - fortunately or unfortunately!
Deb really covered all the bases, so I won't repeat what she said, although I support everything she said! I would strongly recommend seeking out an elder law attorney. Many of them will offer a "Medicaid review" for a set price. We went to the best elder law attorney in our area. She did a fabulous job - it was a one time fee of I believe $800.00. After meeting with her I had my stepdad on medicaid in just a short time. My mom still has the house, as medicaid exempts the house. I won't go into all the details here, but just wanted to encourage you to seek some professional help.
It all feels so overwhelming on your own. Know that there are lots of us who care!! Feel free to come here anytime and connect with us. Thinking of you -
The Following User Says Thank You to TC08 For This Useful Post: Gabriel (10-06-2011)
Hello...I am glad you are back and can figure out how this site works.
I understand how difficult this is for you. We have all been there.
Do what Deb said...call for help. DON"T wait for it to show up at your doorstep. Not everyone understands what needs to be done. Call them and give them specific things you need. For example, ask them to please come and spend time with him ...you just might need time alone to go grocery shopping....or to go to the mall or lunch with a friend. Simple things can help, believe me.
Good luck and don't despair. It will all get handled. A little at a time.
Try medicaid. I think TC/Jan got the experience. You got to try it before you get into trouble. You cannot keep him at home all the time later on. Call the right people and look into it.
Call your kids when you need help. Get involved with a senior center or a support group locally. Get into action. Don't stay depressed. You will feel better if you find out what you can do in this situation.
i am so sorry to hear this. please ask your children for help. you should not have to be alone at this time. yelling does not help. you also have to take care of yourself. look into medicare and medicade. take deep breaths and please reach out for help. this is a horrible disease-you need some guidance.
The following user gives a hug of support to debbie g: dancyn (10-09-2011)
Many thanks for your reply. (I think I have some other replies, but I'm not smart enough to find them, although I am pretty computer competent!) I just can't get my mind around all of this, we have Medicare, my elder lawyer says my husband has enough income stream that he can pay for a nursing home, the problem is that I won't have enough to live on. Nobody seems to address this. And day to day I am just so despondent at the lack of companionship and company. I feel as if my life is totally joyless.
Dancyn - Glad you are posting. Sorry you're having difficulty with the site. I hope you can get comfortable navigating here, because I know there are lots of us who want to offer comfort and support to you.
Yes, Medicare will pick up the first 100 days of a nursing home stay. From there, you either have to "private pay" or apply for Medicaid. Since I don't know the ins and outs of your finances, you may be in a situation where a "spend down" of your resources is necessary before you can apply for Medicaid. But - Medicaid allows the spouse to keep assets. I don't want to quote figures, because it varies from state to state (Medicaid is actually a combination of state and federal funding).
Don't mean to overwhelm you, but would hate to see you spend everything when that's not necessary. Your elder law attorney should be addressing this, and be able to explain to you what you as the spouse are able to keep.
I know this all can be so overwhelming, and I feel your despondency. Take it one step at a time......I'm sorry you are so sad I'm sending you huge hugs of support from here......thinking of you -
Dancy... 50% of all assets are yours and you will be allowed to keep your primary residence. You do need to address your rights elated to medicare with your lawyer. Ask the lawyer what is left for you if DH goes into long term care.
I do understand the isolation and despondency this disease can create. Please reach out for help. I will say it again, don't wait for somebody to show up. Call and ask. Those that have not been in your situation can not understand how you can live in the house with somebody and have no rewarding conversation and companionship. This disease is just beyond comprehension for those that don't understand. So please call in the troops. Call the Alzheimer's Association. Many chapters have volunteers that will help out. Call his doctor and ask if hubby can have home health come in paid for by Medicare. For a dementia patient in late stages or with other complicating issues Medicare will pay for Home Health if prescribed by the doctor. If your husband is a veteran check with the VA. He may be eligible for benefits through the VA... even for long term care. I found a valuable resource through Mom and Dad's church by calling and talking to the secretary. There was a wonderful gentleman who had just lost his wife and was looking for something to do. For a year he would take Mom and Dad where they needed to go. Mom said he was "Driving Mrs Daisey". Another friend took Dad to his club meeting once a month. Mom's sister would show up, but only when called and told what needed to be done. Check out the local adult day care centers in your area. If he had somewhere to go a few mornings a week, it would make a huge difference to you. Find out when your local Alzheimer's Association support group meetings are held. Ask one of the kids to stay with Dad long enough for you to attend. Then you will have local contact with others in the same situation. So please reach out. And keep typing here
PS... get the book "Creating Moments of Joy" by Jolene Brackey. I think it will help. Also "Coping with Alzheimer's: A Caregiver's Emotional Survival Guide" by Rose Oliver and Frances A Bock is an excellent book.
also, you may get a letter from your clergyman or vets to say your husband was an outstanding citizen and the nursing home may reduce the price. also for yourself. we did this for my mom and they did indeed reduce the price-some. just a thought
The Following User Says Thank You to debbie g For This Useful Post: dancyn (10-19-2011)