I would appreciate any advice of insight into my situation. I am considering placing my husband. he was diagnosed in 2008 and is steadily declining, low moderate stage I would say. He has trouble speaking now, cannot find the words, constantly losing things, needs help bathing and dressing and is starting to have incontinence issues. I retired from my full time job in 2008 to care for him and now work part time out of my home that is becoming increasingly hard with his needs throughout the day. He is ambulatory, and his physical problems (heart, COPD, peripheral vascular disease, sleep apnea) are stable as I write this. He does not need NH but assisted living. I have looked at several facilities and most say I must be approved by Medicaid before he is placed on the wait list. I know it will take 3 months to get approval for Medicaid and then who knows how long he will be on a wait list. I tried daycare and he hated it saying I don't want to be with "those people." I have supportive children who occasionally take him but they all work and have young children. My husband is almost 10 years older than I and I feel my life ebbing away. He goes to the local senior center most days for a few hours but cannot participate in many activities. He does like to go. I feel very guilty even thinking about placement as I know he is not as bad as many--he is not violent nor does he wander. HE basically sits on the couch or watches TV or tries to talk to me when at home. The conversations always seem to end up in an argument because I cannot understand what he is trying to say or he takes things in ways that were not intended. I know everyone is different. I guess I am wondering if placement sooner rather than later is the way to go?
CO2, only you know if he's at the stage where he should be placed or if you can no longer handle the stress of caregiving at home. As many others have said on this site, it's always better to prepare for placement before you think it's necessary (sooner rather than later) so all the paperwork will be completed and he'll be on a waitlist and hopefully a spot will be become available when you need it. Once he's on a list, most places will allow you to decline the spot if he's not ready and will hold his position on the list for some period of time (the one list dh was on allowed him to keep his spot for 1year).
Have you seen an elderlaw attorney to help you with medicaid planning and protecting as many assets as possible? If you have not then I would recommend you see an elderlaw attorney who specializes in medicaid planning BEFORE you apply for Medicaid. Where I live most alf's are private pay and require you to be private pay for 2 years before becoming medicaid eligible...is that the same with the alf's who are requiring you to apply for medicaid before allowing your dh on the list?
If you have been reading my blogs, you know that my mantra is "sooner rather than later", and I have followed my own advice, which has served me well. This may be a bit long, but please bear with me as I am in your shoes.
I moved into an Independent Living Villa, which is next door to, and associated with, an Assisted Living Facility "sooner rather than later", before I needed it, because when the smoke detector battery started beeping in our house with 10 foot ceilings, I thought - who is going to get on a ladder and change this battery. Not my husband, who was becoming disabled from diabetes in addition to his Alzheimer's Disease. Within a few months after moving, his mental and physical situations declined, and I definitely needed the services offered in my Independent Living community.
I sent my husband to Day Care "sooner rather than later", before I thought he needed it, because his name came up on the list for it to be partially paid for, and I didn't want to go to the bottom of the list. Surprise - he was ready for it and loved it.
When it became too difficult for him to shower himself, I applied for Medicaid - we lost all of our money in the housing crisis, so being approved was a slam dunk. They took over paying for Day Care that had been partially funded by a different program, and they sent me a male aide to shower Sid twice a week.
Now he is fast becoming too physically disabled for me to take care of him on my own, so I am starting the process of getting Medicaid to pay for a facility.
So yes, absolutely - "sooner rather than later" is the way to go. I swear by it. If I had waited until now to apply for Medicaid so he could have services, I would be in the hospital myself from physical and mental exhaustion in trying to care for him. Because of his physical disability, he needs to be waited on almost 24/7; I am unable to shower him, because he needs to be held getting in and out of the shower, and I cannot hold his weight. We would both end up on the floor.
With Alzheimer's Disease, functioning can change in a second. You do not want to end up in an emergency situation where all of the applying, looking, and placing have to be done immediately.
As for "when" is the right time for placement - I feel it is when the spousal caregiver has had enough. When you physically, mentally and emotionally can't do it anymore, it's time for placement, regardless of the stage they are in. That may sound selfish, but I prefer to think of it as self preservation. I have seen too many spouses almost dead from caregiving before they consider placement. It's not an easy decision - I can assure you that it is tearing my heart out, but I can't keep this up anymore. joang
Oh Joan yes my heart is tearing apart too, and I also cannot take it anymore. Your last paragraph says it all. That is where I am , already, and I STILL get those dumb guilt feelings. I will most definetely get sick or break down mentally if it goes on and on. I am hoping and praying for all of us here.
LFL that is a very interesting comment you made about being able to be "on hold" for placement for up to a year, I wonder if Medicaid approval does this? I will certainly ask when I go for my appt. on Wednesday, and let you all know here.
CO2, you have gotten good advice here, I too believe you should start NOW, if you do not need to rush it then that is good. I myself made sure to have every stitch of paperwork and information ready when I submitted to Medicaid application, and the set up an appt. for me only 2 weeks after I sent it! It sounds like you need to do this, and maybe should not second guess yourself. You can always change your mind, is my mantra. It is not going to get better, except for miracles. I still look for them.
Thank you all. This is indeed what I needed to hear. Deep down I have felt sooner rather than latter is the way to go. I watched my mother care for my father far too long until she ended up in the hospital. I also am comparing myself with my neighbor whose husband has vascular dementia and who is determined to keep him at home and makes every minute decision for him 24/7. I realize I need to do what is best for me and not compare myself with anyone. I will contact my Medicaid advisor and set up an appointment. He is going to help with the application. I still have some financial decisions to make but again thank you.