Caregiving and Working Overload: Have to make tough decisions

Hi Bill,
My husband is 68, has advanced LBD and must have 24/7 care. He still dresses himself, is bathroom proficient, feeds himself, but the list of things he can no longer do is growing each minute. He wanders, asks me my name, is paranoid, hallucinations are all day and night, takes things out of closets, drawers, hides mail, etc., and he is fast which makes it hard to even brush teeth or go to the bathroom. I sometimes wonder if I am the one developing dementia because it is too overwhelming at times. No one helps other than to occasionally talk with him on the phone, or rarely drop by for a few minutes. I have to pay for so many things he always did, and now I can look back and see that I took forgranted so much for our entire marriage (repairs around the house, yard work, cars, the list is endless). His conversations are jumbled, and I mentally work hard to try and connect with him. It is so sad to miss someone when they are standing right in front of you.... Yesterday, I interviewed in our home a caregiving team. I think this is going to be a blessing as they talked a lot about how I need to put myself back together and create a life that will carry me through the really tough times that are coming. They are going to take him places some so that I can relax or get things done at home, and they will stay here some so that I can go out. We are starting at 15 hours a week for $20.00 per hour. As I am a bit hesitant about having others in our home, I requested this so that my sweet hubby and I can ease into more hours as needed. They were very understanding and willingly complied. Tomorrow is our first day - and I am excited and nervous. (I forgot to add that they will do house cleaning, light meal prep, meet all of his needs as they arise, etc. ) I am afraid that I will feel lost as my hubby has been my world for the past 32 years (24/7 for the past 5), and yet excited that I might be able to do something normal like getting a haircut....or take a shower without worrying about what he is doing. I hope maybe you can find some other type of help. If people come into your home, you won't have to worry about getting your wife ready to leave. Maybe you can keep your job and have time to do some thing else you enjoy.
I will admit that I spent a lot of time asking about and talking to agencies, private sitters, etc. I even tried a couple of individuals that just didn't work out or unexpectedly quit. (That was emotionally hard.) However, I know there is no other choice and memory care in our area would be an absolutely horrible experience for both of us.
I have to go as he is up now and hungry....God bless you as you work this out in the best way possible for both of you. Remember, you are a silent superhero and you are doing an amazing job. Your wife made a good choice to marry you. God Bless!

Hi Bill- Boy, I know how you feel! I went through this earlier this year, and thankfully, mine was for a shorter period. I was also my husband's caretaker. And you are right. No one lines up to do laundry and dishes.

David's doctor initiated hospice and then, just by chance when a nurse friend stopped by she stated that he needed to go to a 24-hour hospice care facility. And off he went. Without going into a lot of minutiae we never had a conversation again. He also had vascular dementia.

If she is in the last stages of vascular dementia hasn't her doctor prescribed Hospice for her?

Dear teacher,
You are an inspiration! You state facts, but give ideas and hope.

Thank you and bless you!

Oh wow...this just started the day off with a heart squeeze! Thank you!

It would be really helpful to make an appointment with an Elder Law attorney as part of your information-gathering. They have special certification and are very knowledgeable about the rules in your state as to legal protection of assets for the spouse, with an expected/needed future application to Medicaid for assistance in paying for inpatient/memory care. Every state has laws about “spousal impoverishment”. Look at it as just gathering information, no decisions being made.
Don’t feel guilty, such as “I’m being disloyal to my spouse even by thinking about placement.”, or “They’ll take my house, there’ll be no inheritance for the kids”. or “I’ve always paid my way, I don’t want to be on the dole”.
Don’t do magical thinking, such as “My spouse won’t get good care, they’ll be unhappy.” My husband (vascular dementia dx ) had to go into assistive living as his health plummeted to hospitalization after he began to refuse all meds and appropriate diet foods.He is so much healthier with the structured environment and is happy too- has a group of guy friends, enjoys the staff attention.
As part of information-gathering, you can visit facilities in your area that accept Medicaid (from the level of care you’ve described your wife needing, that would be skilled nursing facilities). The admission people hint that they would like at least 3 months private pay. Upon admission, they contact the county Area Agency on Aging, who will send out a staffer to do an assessment to determine if the person’s care needs are SNF appropriate, as almost every resident converts to Medicaid at some point (maybe not the Vanderbilts, but you get the point). The agency may begin the Medicaid application, but the Elder Law attorney will have given you advice as to what to do and will have put in place the legal protections for your assets, as allowed to prevent that spousal impoverishment. When needed, Medicaid will tell you what you need to “spend down” to reach eligibility- expenditures related directly to the spouse are allowed- the facility monthly fee, a pre-paid burial plan, a lift chair, the Area Agency people will be very helpful as to what’s allowed.
Medicaid does a 5 year look-back, so no dumping assets- large money gifts to adult children, sales or purchases/gifts of expensive items- jewelry, etc.
Very important- don’t sell your house. If you do decide that placement is a necessity and at some point your wife converts to Medicaid, and you pay the monthly “co-pay” the state has decided you owe, if she passes first, nothing happens until you pass, then they will require the house to be sold and will attach what is needed to “pay back” the Medicaid funds used, as well as those assets that were identified as hers under the “spousal impoverishment” determination.
Information is power! Gathering it will help you focus away from circular thinking and panic. No decisions have to be made right this minute.
We’re here for you.

My wife and I cared for her mother while she was dying from cancer and we had our first child.

I'm not sure how we got through. But I was not alone. I had my wife to lean on.

The only thing I know for sure is that if I did not take care of myself first I could not have been there for anyone. Not my mother-in-law, not my wife or our new born son. It is easy for me to write this I am not in your shoes, but anyone providing care to a loved one has to "put on their oxygen mask first." I can be of no help to anyone if I can not function.

I had the good fortune of being in contact with a loving therapist who helped guide me through my choices.

You have reached out on this board and I know you will find lots of support as I have. Perhaps you can find a therapist in your area just to talk to. No therapist can tell you what to do but they help you see through your suffering to the answers that your love will provide.

I wish you strength and peace!

You are doing an amazing job. I am retired with my husband. We both have a number of health issues. One day at a time is all we can each do. I find communicating with family is drawing them into greater awareness of changes that are taking place. It is challenging & v hard. These stories of Care are Inspirational. Keep planning, talking and discerning the best path forward. Well done to each of you.

My name is Greg D. Or Greg1956. I has a TBI 2012 from my bicycle accident. For now, I have 20% of my memory & understanding & doing helping myself to help of what I could (before my brain-injury).

My mom & her sister, Polly - both in their mid- 80’s) had the same “sickness” and another sister, Peggy, has some 50% of that.

My brother helped my mom and then added someone to help him (for free) to clean her for a couple hours 3xweek.

At the beginning of my accident, I was at nurse/medical places that did everything that you said: cleaning, shower, food, cussing..then my life has cheated the opposite of my life (I think God was given me, daily).

Thanks again,
Greg D.

I hear you loud and clear Greg D. and share your feelings. My husband and I are not in the same position as you and your wife but see things progressing fast. I had plans for my retirement and never imagined I would be a full time caregiver for my husband instead. Because of his health, I decided to retire from the best job I ever had and miss it very much. I joined a support group and have learned about services available. He now has an 8 hour per week at home Respite Worker who has been of tremendous help but it is not enough. The needs are greater and will continue to be greater and more time consuming.
The best to you and your wife.

My comment was incorrectly addressed to Greg D. It should be to bill2001. Thank you.