Running out of steam

tryingtodurvive · July 29

my DH is in Alzheimer’s stage 6b according to the doctors. We’re about 7 years in and I’m questioning being able to proceed to the end of this journey. I feel so guilty and selfish when I read about all of you who are lovingly caring for your loved ones beyond where I am. I am 62 and still working full time. I can mostly work from home and have friends who will stay with him one or two days a week to allow me to get to the office. He can do nothing on his own. I bathe him dress him help him brush his teeth shave him etc. he has now started the process of not knowing who I am and wondering where the real me is. It’s a constant round and round conversation about who I am where I came from, etc. I’m physically and mentally exhausted. I wake at 4:00 am to have an hour or so of quiet time to read my Bible and pray. I’m starting to consider memory care but I worry it’s too early and I’m being selfish. Are there any of you out there who have made this decision at this point in the journey?

M1 · July 29

Why on earth would you think it's too early? You're clearly not alone in this, but it's definitely not too early. Makes me curious as to what your criteria are. If you're exhausted, it's time. You need to be able to work for your own retirement.

Lkrielow99 · July 29

if he is unable to perform activities of daily living, IMO he is ready for either home health, MC, or a nursing home. That is where my line in the sand is drawn. I’m 10 yrs younger than my DH and he is stage 5. I’ve told his family stage 6 is the decision time. Wishing you the best. Please be kind to yourself. much love and hugs to you.

harshedbuzz · July 29

@tryingtodurvive

It sounds like it's past time.

HB

midge333 · July 29

You are performing at least 2 full-time jobs. It is time to consider placement for your own survival.

CindyBum · July 29

I remember so clearly the conversations my DW and her sisters had about both of their parents who ended up with dementia. Both times, they struggled and talked about how hard it was to walk across that bridge to the decision they knew they needed to make. They felt such guilt and grief, but once they started saying it out loud, they started to admit that even having the conversation meant the time had come.

There will likely be a time for all of us to face that bridge. I don't look forward to making that call with my DW. I dream I could handle all of what you described, but like you, I'm younger (58) and really can't afford to stop working. It's also a lifeline for me to the "normal" world. Caregivers or MC placement will definitely be in my and her future.

It's more than ok to trust that voice inside of you. It knows the right answer, even if. you're not quite ready to accept it yet.

xoxo

housefinch · July 29

Different situation, but my husband and I have a special needs child who will need lifelong help and won’t live independently as an adult. We recently met with our financial planner who said she’s going to help us arrange a supported living situation for our child when she’s 25 (when we’re 75). We both started tearing up in the appointment, because our answer when she asked what our plan was? “To take care of her together until 1 of us drops dead from exhaustion or a heart attack.” She reminded us that we deserve a life too. Sending you comfort and hugs.

SDianeL · July 29

If you are physically & mentally exhausted, it's time. You will still be his caregiver just in a different capacity. You can visit him and make sure he is being well cared for. Many facilities have Social Workers or support groups you can talk to if you feel guilty. I think your DH would want you to live your life to the fullest.

fmb · July 29

I agree, it is past time. You cannot let this disease claim two victims.

jfkoc · July 29

Get your Plan B in place!

Denise1847 · July 30

You are amazing that you have gone this long in the state your spouse is in. You have to work and sustain your life. Take care of yourself or the disease will claim you. I am retired and I know that I will not be able to go the distance keeping my DH at home.

sandwichone123 · July 30

I am also younger and placed my spouse in memory care/assisted living much earlier, when he could no longer stay home alone or leave the house alone. He has now progressed to needing care with hygiene and other ADLs, but he had been in assisted living for a year and a half before that. I realized that I could either continue working or care for him, but not both. I didn't think that giving up my life would really improve his, but I knew I didn't want to find myself in my early 60s with no job, no contacts, and no current experience.

tryingtodurvive · July 30

tryingtodurvive · July 30

I want to truly thank all of you who have given me your support to help me with my decision. I have found a beautiful place for him and am so close to beginning the process. Your comments have truly helped more than you can know I’m praying for final guidance but I’m just so broken as I get ready to pull the trigger. Love and hugs to you all

549jb · August 4

It's a difficult decision to place your LO in Assisted Living. I recently made it, for the reasons many have listed above. If you can't leave your LO alone because you are worried for their safety then it's time. There are many good places to choose from. It does take time to finally get them in. Often there are wait lists. Start the process as soon as you can. You will get your life back (sort of) and it takes time to settle into the new routine. It's a better life for my LO because he has so many activities and much more stimulation than being with me. It's not easy but it's better and he is safe. All the best to you.

concerned_sister · August 4

https://alzconnected.org/discussion/comment/217418#Comment_217418

Thank you for sharing your dilemma and the advice you received. As you perhaps recall I'm dealing with DB with early onset ALZ. I have an older brother who has been a widow going on 3 years. He has an autistic daughter in her mid 30's. He called Friday to share that he scored 25 on a MoCA test. He retired less than a year ago, and asked me to sit in on all meetings with his financial planner. He has an upcoming blood test for ALZ. Luckily he did make LTC plans. I have to take deep breaths thinking he may have to revise/implement those plans.

Lee39 · August 5

I am just where you are (although 82 yo to your 62), 7 years in and just beginning to look at memory care for the same reasons. With your having a job I can’t imagine how you cope with caregiving too. 549jb’s statement that if you can’t leave your lo alone for their safety then it’s time for mc really makes sense to me. Just want to say you’re far from alone in wrestling with the mc decision and wish you the best.

tryingtodurvive · August 5

just as an update I’ve made the final decision and am in the process of placing my DH Im sick and heartbroken and so dreading the process. He’s going to be so mad at me but he’s mad more and more anyway. At least when he starts getting mean now I can go home. Thank you all again for your words of advice and encouragement.

M1 · August 5

please keep us posted, will be thinking of you.

White Crane · August 5

Praying it goes well for both of you.

TooEarly · August 11

Dear Trying,

You're not alone — much of your msg resonated with me. I'm a hair younger than you. DW was early-onset and now around stage 6c. She needs help showering but still dresses self (mostly). I'm not an early bird like you but a night owl so I stay up late sometimes to walk a basement treadmill just to get in a day's exercise. Sometimes I walk the neighborhood at 11 p.m.

I too am working (mostly from home) and managing all. Been handling it but recent signs have me worried (not recognizing her sister, almost never now remembering her brother's name) that the next step is coming much sooner than I have been thinking. Wondering if I've screwed up. Just making contact now with in-home caregiver candidates and MC.

Running out of steam

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