Early On-set sadness

ChaChaJ

My DH seems to be advancing rapidly in his disease; he is only 61. I feel guilty that it's because I can't provide the level of care he needs. We've made too many trips to the ER lately. Most recently, he fell out of bed, tripped on a metal step stool, broke it, and then snapped the stabilizing bar, and it stabbed him in the throat. It was quite an ordeal for both of us. He ended up with a three or 4-inch slice in his throat. They stitched up, and I got him home, and he stood in front of me and ripped all the stitches out as blood gushed out. I yelled and begged him to stop, but he wouldn't. He didn't seem defiant, just lost in his mind; he had forgotten the incident and didn't know why the stitches were there. I took him back to the ER, putting a different type of stitch in, hoping he wouldn't bother them. It seems to have worked; he's leaving it alone. He doesn't know or remember anything about it. That is how it is now. His short-term memory is a nano-second. The ER doctor told me to start the process of moving him to memory care. He could observe the difficulties without my saying anything. As the Dr put in the second set of stitches, my DH kept pulling his hand away, and the Dr. had to keep telling him not to touch it. This is terrifying to me. I have no idea about how to do any of this. I have POA medical and property, but that's about it. There are days when my husband seems pretty good; those days are the hardest for me. It makes it painful to think of moving him.

Further, I worry about how to pay for this, get him a quality care center, and financially sustain my life. I feel pretty hopeless most days. I never get a good night's sleep, and I have lost interest in having any kind of life of my own. I have never felt so much despair. I wish I had an advocate to help me navigate this big step. Does such a person exist?

M1

welcome to the forum and I’m so sorry, yes he’s very young. Have you talked to an elder law attorney about getting him qualified for Medicaid and how to protect your assets? That might be a place to start.

I know this sounds harsh, but if he’s progressing fast he’ll probably continue to do so, and there’s some mercy in thinking it may be over sooner rather than later for both of you.

You have come to a good place for advice and support. You may want to try the help line also, or your local Alzheimers association chapter for local resources.

​fesk

I am so sorry you are both going through this. That experience sounds frightening. In additional to the elder law attorney who will help you with the legal/financial aspect, there are geriatric care managers who are knowledgable and can help you navigate placement.

Jazzma

Our local fire department has a 'CARES' office (I'm not sure what the acronym is for) that provides information and support for situations where it's an emergency but not one that would be helped by a trip to the hospital. They have been really helpful for me as I've tried for months to figure out if/how I could bring my DH back home from memory care. We also have a County division of Aging and Long-Term Care that has a wide array of information on support services. I hope you are able to find help. I know even looking for help seems like too much of a task when things are so desperate.

HollyBerry

Have you spoken to the ADRC in your area (Aging and Disability Resource Center - there is also an ADRC which is something like the Alzheimers Disease Research Center - totally different). I've found them to be very helpful in finding resources and just listening with an experienced ear- sort of like a social worker who's there for free. The hospital where you've taken him to the ER may also have a social worker who can help you identify an advocate to help with the transition.

rplourde50

there are, for better or worse, a number of different consultants needed. Professional fiduciaries are a good start, though expensive. Then there are life care consultants. The former do financial and legal kinds of things, the latter do more medical management. Both will “subcontract” to more hands on people so it’s a complicated thing to even establish a support system. We are just starting to put these things in place. If your neurologist has a social worker they can help guide, too.

Pat6177

I don’t know what medical care your DH is receiving but I wonder if he would benefit from medication for his behaviors. The best option sometimes is to have him admitted to a geriatric psych unit and be treated by a geriatric psychiatrist (aka Geri psych). Your DH’s PCP may be able to advise you how to do this. Often folks have a crisis, call 911, and their LO is admitted to the Geri psych right from the ER. And please, if you feel threatened at all, call 911. Be sure to tell them when you call that your DH has dementia.

At the top of this site there is a link to “Groups”. In there is a group for beginners info. Lots of good info in there.

In general:

As recommended above, see a Certified Elder Law Lawyer (ck nelf.org to see if there’s one in your area. Call and see what they charge before making the appt. There can be a real difference from one lawyer to the next. And they might provide a free intro meeting - doesn’t hurt to ask.

Apply for SSDI from Medicare or “disability”. Dementia is one of the diagnoses that gets fast tracked.

Talk to all the people you interact with and ask if they know anything about the memory care places in your area. Ask if they know of Care Managers. Sometimes the lawyers have names. Maybe the PCP. Your local County Council on Aging May provide names.

Call the Alzheimer’s Assoc and ask to talk with one of the councilors - that might be the wrong title - but let them know that you need help and need to talk with someone and they will know who to connect you to.

This forum is the place where I have learned the most about dementia. There are also lots of good videos on YouTube. Tam Cummings is one expert. Natalie with Careblazers is another good one. And there are others.

It is overwhelming. But we here on the forum are here for you. Sending you virtual hugs!

White Crane

ChaChaJ, My heart was breaking as I read your post. I'm so sorry you and your DH are having to go through this. You have been given some good advice and I hope you can find the help you need. The Area Agency On Aging was a Godsend for us before DH went to MC. They provided aides to stay with him so I could get out and run errands or just have some free time. They also provided a shower aide to help him when I wasn't able to. When it came to selecting a MC for my DH, I visited those available in our area and talked to friends whose loved ones had been in MC. As to financing it, an elderlaw attorney has helped me through the whole process. Without her I would not have know where to even start. I hope some of this helps. Sending hugs and prayers.

katefaye

I am feeling similar, DH is 59 with early onset Alzheimer’s. He is declining rapidly. I’m looking for resources. Thank you for all of your ideas.

tmmcwilly

https://alzconnected.org/discussion/70815/early-on-set-sadness

so sorry to hear. What a scary thing to happen Any chance your DH was a veteran? They offer a benefit called Aid & Attendance to help subsidize the cost of private (not a public nursing home) AL & MC. The amount depends. Patriot Angels helped me figure out how much he qualified for based on srrvice and his assets for planning purposes, and they will help with the full application process.

Michele P

https://alzconnected.org/discussion/70815/early-on-set-sadness

We are using Oasis Senior Services. The agency is in multiple states. They assist with in home care and out of home placement with assisted living and memory care. They will walk you through the process and set up the tours at the facilities. In our area, Oasis has relationships with other senior service agencies to assist with anything you need for caring for your loved one. Get on a waitlist with a refundable deposit now. Safety is always your priority.

tboard

https://alzconnected.org/discussion/70815/early-on-set-sadness

I am sorry you have to go through this. He is young. I don't think anyone is a born caregiver. We have to figure it out as we go. I am going through this with a family member for the third time. So far I have been one step ahead as far as safety around the house. My DH is progressing more slowly giving me more time to figure things out. I can not afford memory care. I am younger than he is and was forced to retire a few months ago. I learn as I go. We have some really bad days and some OK days. My life as I knew it is over. I try to find a few moments of joy each day. We don't get to do any of the things we planned on doing in retirement. I am finding it is best to forget all that and to rethink our future.

Momx3

https://alzconnected.org/discussion/70815/early-on-set-sadness

ChaChaj I too am going through what sounds exactly like you. My DH is 64 and I am 62 (and still employed full time). His short term memory is non existent. He does have some good days but they are getting less and less. I just installed camera's in the living room and kitchen so I can keep an eye on him through out the day when I am at work. I spend a lot of waking hours worrying about what I am going to do when he can no longer stay by himself. Don't know how I can afford memory care. We still have a mortgage on our home. We have been on this journey about 3 years now and I would guestimate he is probably stage 5 or 6. Please feel free to reach out to me if you just need to talk or vent. It sounds like our cases might me similar. God Bless you and your DH!!!