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Early On-set sadness

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?

Comments

  • ​fesk
    ​fesk Member Posts: 504
    Legacy Membership 100 Comments 25 Care Reactions 25 Insightfuls Reactions
    Member

    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
    Jazzma Member Posts: 216
    Sixth Anniversary 250 Care Reactions 100 Likes 100 Comments
    Member

    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
    HollyBerry Member Posts: 216
    Third Anniversary 100 Comments 25 Insightfuls Reactions 25 Care Reactions
    Member

    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
    rplourde50 Member Posts: 47
    Second Anniversary 10 Comments 5 Care Reactions 5 Insightfuls Reactions
    Member

    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.

  • White Crane
    White Crane Member Posts: 1,077
    Eighth Anniversary 500 Care Reactions 250 Likes 500 Comments
    Member

    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
    katefaye Member Posts: 2
    First Comment
    Member

    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
    tmmcwilly Member Posts: 9
    First Comment
    Member

    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
    Michele P Member Posts: 157
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    Member

    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.

  • Momx3
    Momx3 Member Posts: 31
    Second Anniversary 10 Comments 5 Likes 5 Care Reactions
    Member

    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!!!

Commonly Used Abbreviations


DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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