I've just read the thread on grief and I know we all grieve thru this whole process but recently I've become more concerned about what to do in the final stages. Will I be able to care for DH at home? Will I have to place him somewhere else? Will I be able to afford the cost if that happens? I'm sure everyone has similar thoughts. How do you deal with this? What steps can you take before this happens?
Thanks so much for being here. I've spent many hours reading posts since I found this site.
Audrey, as you have probably read, you should visit with an elder care attorney to get all your legal paperwork in order and find out if you will be eligible for Medicaid if the need arises. That should answer some of your questions regarding finances.
The final stages are different for everyone. In my case I did take care of my husband at home during the end stage. He was considered end stage for five years. Totally bedridden, contracted and unable to communicate. To me, he was easy to care for at this point. I did hire in home help to bathe him and to stay with him if I was gone any length of time and for me to take vacations. I understand this is unusual and wouldn't work for everyone.
There is no way to truly prepare for what is coming. It is like all the other stages and phases of this disease...you just roll with the punches and do what you need to do to keep your husband comfortable and you sane.
my dh is in stage 6 and I'm also worried about what happens if I can no longer take care of him. I know a nh would drain our bank accounts. I made a promise to myself that I would keep him here as long as I can. I can't even bring myself to look into nursing homes. I don't ever want him to think that I've abandoned him! Some -days it's one step forward and other days 20 steps back- I guess I'm putting alot of faith in God right now.
My poor husband has been at so called end stage for at least two years. His color is awful and he is sometimes on oxygen. Hasn't known me for years. He chokes on even his special diet and is losing weight. In spite of excellant care he is starting to show skin breakdown. Hospice has been wonderful. He is in a wonderful facility. I could not duplicate his care at home. During the day he is in a recliner where at least he can watch activities around him. Ever time the phone rings I jump. My stomach is in a constant knot. We do have a LTC policy. Very expensive premiums but well worth it.
I agree with Sandi* about contacting a "Certified Elder Law Attorney" pronto. Everyone knows my motto is "sooner rather than later". You don't want to be in the middle of a crisis to start getting all the information and planning you need.
As to "when" to place him. BEFORE you get so worn out, that your mental, physical, and emotional health is shot to Hell. Once LO's are placed, most caregivers realize that they waited at least one or two years too long to do it. But every caregiver is different, and every AD patient is different. There is no "one size fits all".
Joan, when the time comes for your Sid, will he be able to simply move over to the Memory Care Facility within your property. I'd find that to be a comforting thought..if that's how it works. I know there are facilities called "Continuing Care" and I think that's how they work...but don't know if it doubles the "rent" or not.
Thanks for the comments on this subject. As for Continuing Care communities, we have a friend who is encouraging us (me) to look at this. She has been at this particular CC for three years and her DH is now in the Memory Disorder facility there. This is the way she explained it to me. They paid an entry fee when they moved there. Monthly fees which included everything for the two of them. Since Ed has been moved to the next care level, Angie pays less for the apartment but at the same time they are paying around $150. per day for him. She said due to the "endowement fund" that if your money gives out...you still live there. I'd want that in writing....in blood!! I'm seriously considering this.
Joan do you live in a continuing care community? If so, would you please share your thoughts on this? One thing I would be concerned about with my DH is the changes in his life. His neurologist said don't move things around. This would be major moving things around!!
I shut the computer off early last night, and slept late this morning. My message board monitor alerted me to your question. I live in Florida, the senior capital of the world, so even though they are behind in a lot of areas, they are at the forefront when it comes to senior care. We have zillions of places with varying levels of care. I am 61 years old, and my husband is 67. Hardly ready for Assisted Living, but I knew I needed help, and was going to need more and more help as he progressed, so I made the decision to skip the "over 55" developments, and head right to Independent Living. I am 20-25 years younger than everyone here, but it is what I need for now. I addressed all of the questions you asked in the series of blogs I wrote last summer (I asked them all to myself before I moved). I think they will helpful to you. Log onto the home page - www.thealzheimerspouse.com. Click on "previous blogs" on the left side. Click on 2009. Click on June, and read Blog #411. Then go to July 2009, and read Blog #420, 424, 425. August 2009 - Blog # 433, 436 and 441 (moving tips), 443. September 2009 -#444 and 449.
I realize it is a lot to read, but they are very informative and insightful as to how I made my decision, how it affected both of us, and a lot of moving tips.
I live in an Independent Living Villa in a small neighborhood ( 8 buildings; 4 villas each) behind the Assisted Living Facility. The ALF also has a dementia unit, so Sid can move there when the time comes, and I can stay here - hopefully, if the finances work out properly.