Things keep changing around here. Things can change in a second when Alzheimer's Disease is involved. With that in mind, I have updated a 2 year old blog (how things have changed in 2 years!) on making arrangements "sooner rather than later". I invite you to log onto the home page - www.thealzheimerspouse.com - for some important suggestions and information to make your lives as Alzheimer Spouses easier and more prepared.
Great blog, Joan! I THINK I have done all of this- or most of it anyway. DH's son has all info, my sister (only relatives) has all the info. Emergency stuff in refrigerator; medic alert bracelets; all docs are in a small safe under my computer desk. Closed the safe deposit box at the bank and brought everything home - to the safe. Not ready for day care or placement yet, but have checked things out.
And, yes, emily, I did the waterproof mattress cover about a year ago. Thankfully, it hasn't been used - yet!
Joan, all (most?) EMT's always know to look in the frig to see if there is any information. I typed up a sheet with all info re DH, myself, emergency #'s; his medications, his doctors, also his DNR - original form. Just put the info in a ziplock bag and I put it on the top shelf where it can be seen.
I am in the process of making final plans, which is something we all need to do. My DH has slid down the slippery slope so fast in the last couple of months that Hospice tells me to expect just 2 or 3 weeks! A month ago no one ever expected him to be gone anytime soon. Monday I have an appointment with the funeral director to make plans for his funeral. The obit is written and ready as well as a list of people that will need to be contacted. You just never know how soon you will need to do these things.
So sorry that the end seems to be so near, but we sometimes don't have any control over this illness. Know you will have the strenght to carry on and get through this final step. Hugs galore coming your way.
phil, my heart goes out to you. I hope what I am about to say isn’t out of place, but I actually hope that when my DH starts the final phase it does go fast. So many of our LO’s just linger & really have no quality of life. Even though we don’t want them to go I don’t want mine to linger if he has no quality of life. I’d rather he be in heaven in a perfect body praising God. I will keep you both in my prayers & ask God to help you through this.
Joan, Is Florida an easier state in which to get funding for various Alzheimers' related issues? My husband just turned 60, and SS is years away. However, he is fading quickly. Linda
I noticed you just joined us a couple of weeks ago. Welcome to my website. Check the "Welcome New Members" thread at the top of this page, and you will a more extensive welcome from me.
No, it's not easy to get funding from any state for anything anymore - which is why I am going to take it if it is offered. However, if your husband has a medical diagnosis of Alzheimer's or some other form of dementia, he is eligible for SS DISABILITY. NOW. Have you looked into this? There used to be a 2-year waiting period after diagnosis, but due to the advocacy efforts of a multitude of Young Onset Alzheimer Disease families and the Alz. Assoc., that waiting period was waived by SS two years ago. If you have not applied, apply immediately. Sooner rather than later.
Elaine, I have actually prayed that when DH gets to the final stages it will go fast. It's hard enough to see him like he is now in early stage 6. The final stages would be almost unbearable. I feel so deeply for those of you who are going through the final stages now.
Joan I remember all the trouble you went through to leave your Fla dream house and move into the Villa. It was not needed at that moment but as you say 'suddenly it was'.
I need to start surveying day care locations because that will be next. . . . However . . . . It means I will need to take a day off work to do this so . . . . better now than later . . . . sigh
The one area I was prepared is the mattress pad! :-) A decade or more ago we had a cat who was a "pee bandit". Nice cat but she would cuddle on the bed and purr until you walked out (even for just a moment) and then she would leave her little 'gift' and be gone. Stupid cat, BUT we stocked up and now we have nothing but waterproof mattress pads. The cat has been dead now for many years. (natural death - but I thought about felineicide)
I donno, it was either laziness or frugality but we never changed back to regular pads. Then (surprise!) about a month ago I woke up to yet another AD milestone. :-( My wife had no idea what happened or why I was upset, but all I had to do was change the sheets. ;-)
So thank you cat, you made me better prepared for Alzheimer's Disease.
m-mman, I wish I would have read that about a year ago. Whoever is reading this get the waterproof pads now! I was blindsided and have a ruined mattress. I was telling my dh that I was getting a new mattress soon and he said he didn't need one! I recently started to redo his room starting with the carpet. Tore it out and picked out vinyl. Realized have to get him a new chair also. Yuk am not sure where to go for that. Have to do as $$ allows. Want a sturdy, vinyl hospital-like one... but comfortable.
grendelsma, If you cannot find a vinyl chair that you like, I cut the fitted sides off a double size waterproof mattress pad for my husbands lift recliner. I had 2, rotated if it was wet. Just a thought.
I also started using waterproof mattress pads a few years ago when we had young grandkids spend the night & have accidents. I use the kind that have cloth on the top side & plastic on the bottom & some wise experienced person here suggested that when the time comes it’s better to put the plastic side up because then if it isn’t soaking wet you may be able to just wipe off the plastic. Well I have a feeling the time is closer than I want. I caught DH peeing in a waste basket in the bedroom this morning. He doesn’t know where the bathrooms are & I know that so I guess I should have been watching him closer. Oh well, at least for today it was in the wastebasket.
Thanks, Joan. I do not think hubby is eligible because his quarters, even though he has all 40, were not earned in the last 10 years. Even his statement says that if he were to become disabled, he is not entitled to disability. Linda
My husband has been on a downward spiral since April when he had his first major seizure. Since my son adopted a disabled child he got cases of waterproof pads (crib-size) free. I use those on our bed. If there is an accident, I just launder sheets and those pads and anything else that may have gotten wet. I feel blessed because my husband still goes to the bathroom. He cannot tell me anymore; but if I watch for the signs, I can get him there. As long as I can get him to sit, it's good. Hence, extra bath rugs. Elaine, my husband went to the basement and peed in a basket of dirty laundry. That was his first "accident" and that was a couple years ago. It used to aggravate me so-o-o much, but who has energy for aggravation anymore? Joan, we get SS Disability, but any other help is funded through Medicaid. Medicaid includes a cover letter with the application in Ohio that states all help you receive will be recouped from the estate so I am avoiding that at this point.
Linda: I think if I got a cover letter like that I might send it back with the comment "What Estate?" We are on medicaid because we don't have an estate.
Only joking, but geezz. I guess lot of the states do that. I am so glad my dh has priority one for the VA services.
Mary, my husband was awarded Social Security Disability for his Alzheimer's. We've been getting it for about 3 years now. He only turned 61 this year. Please look into that! Social Security called the house while they were deliberating whether he should get it or not. All it really took was one attempted conversation with my hubby. His ability to converse was the first thing to go.
My dh got Social Security Disability at age 59 I believe. Of course, he had several things wrong with him COPD, Heart condition and Alzheimers. It was very easy and he was approved for coverage in less then six months.
My dad was on medicaid and they put a lien on the house. When my dad died and his wife finally sold the house, medicaid took their money out of the profits which was most of it from what I am told. After you are dead, who cares?
Again, everyone eligible for SSD must have first met the guidelines, having earned at least 20 quarters in the five/ ten years leading up to the diagnosis. That done, things should go smoothly if Alz. is on the Compassionate List. Linda