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My wife was diagnosed with dementia 2 years ago and it's progressing. I retired to be home with her.


As I am her sole care giver, what happens if something suddenly happens to me? We have no children or nearby relatives.


I'm healthy but at age 66, who knows what can suddenly happen.


I have no backup.

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I'm sorry that your wife's has this diagnosis. Kudos to you for thinking into the future. Being flexible will be very useful to you. I would start with your not-nearby relatives and work from there: Do you have a good relationship with them? Are they mature, responsible and trustworthy? Are they younger than you? If you moved very close to them would they be willing to be your and your wife's DPoA? There are professional guardians that you can set up for her but this will require making sure the financing is there for it, since it won't be free.

FYI my family just lost my cousin, age 62 -- very fit and athletic his entire life, with no known medical issues or "bad habits". Found him sitting on his couch as if he were sleeping, tv on, wearing his glasses, 1/2 a glass of beer next to him... the autopsy came back inconclusive so family is awaiting a toxicology report. He was my exact age and we are just still so shocked. But you are correct -- who know what can suddenly happen -- to anyone. May you receive much wisdom and peace in your heart as you plan for the future.
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Put instructions along with your Will.
Let Relatives know what you want before something happens.
Write instructions on your wishes and leave on Refrigerator.

If no instructions are left, she would be put in Nursing Home.
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I can't even imagine doing what you're doing without backup. When she starts sundowning, if not sooner, promise us you'll look into memory care. You need to sleep. My brother and I slept in shifts so one of us could stop our mother from having breakfast at 11pm or midnight or 2 am, or whenever she woke up. We also hid the caffeinated tea after she went to bed. You're going to have to keep an eye on your wife's symptoms and your own physical and mental health. I'm pretty sure you can find an advocate for her through the Council on Aging or through your lawyer, and financial details can spelled out in your will.
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Cover99 Sep 2021
Be on the lookout the first Sun in Nov.
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I hear your plea. Every day and night is a concern, What if something happens to me? There was no one who could help because of my LO’s dementia. As much as I tried to think what to do, it always ended up being the same situation - no backup. Fortunately nothing did happen, except one situation where I had a kidney stone experience and needed to go to the Hospital ER. I called the ambulance for myself, but explained that somehow my LO needed to follow me because there was no one to help. The ambulance brought us separately to the hospital and we met there. I was later released home and we both went home together on the coldest night of the year,
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When caring for my mother I had family for short-term backup but I had some health issues (some minor surgery eventually) where some longer term care might be needed so I arranged "backup" care at a local long term care (daycare/AL/MC) facility. Mom attended a community Adult Day Care (ADC) already, so I entered a contractual relationship with the facility where they evaluated Mom and agreed to admit her as a short-term respite patient on as little as one hour notice, provided they had an available bed. Since Mom went to the community ADC 3 days a week, Mom attended the AL's daycare and stayed for the night on Saturday one weekend a month, which allowed her to become accustomed to the place. Or more accurately, it allowed the caregivers there to become knowledgeable of her. All though she only went to the facility I had chosen for placement when/if I could no longer care for her needs, I had a contract with another facility too in case the first one didn't have a bed when we needed it. I had to pay an annual fee for an evaluation update, but it was worth it to me for peace of mind. Mom never needed to stay there for more than a day, but I felt much better knowing if something happened to me, for the short term or longer, Mom would have good care.

Fortunately, I had a brother to back me up on decision making. He had a full-time job and wasn't able to provide much hands-on care, but he stayed with Mom for a few hours at a time and was available to discuss decisions. If something happened to me, he was secondary POA and would take over. If you do not have someone in your family you are comfortable as your secondary decision maker, I would encourage you to consider setting up a "committee" with at least one person local and the others being an attorney and a member from some organization that knows your wife, a club member or a member of her family or clergy perhaps.
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MaryKathleen Sep 2021
I too have almost no backup. I appreciated your ideas and I am going to start looking for a place this week. I like the idea of a contract situation. I will find out if they have something like that.

We aren't quite there yet, but I expect we will be next year. Right now with cameras my husband can be alone for a day or so, but my backup is his niece with stage 4 breast cancer. It is spreading in her body and I might be helping her soon.
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You are living with a potentially dangerous situation. I have taken care of dementia patients in the hospital when their spouses have had heart attacks and strokes. It was never an ideal situation for the patient or the staff member. Hospitals are not set up for long term care.

You need to expand your network of caregivers for your wife. Since you don't have children, it would be helpful to have nieces and/or nephews that check in on you both daily - at least by phone. It would also be helpful to have neighbors that know you and your spouse. Those neighbors should know you well enough to notice problems and could call 911 or distant family. Consider members of your faith community and paid helpers that could become caregivers. Please consider teaching some of these people about your wife's care. Allow a caregiver or several time with caring for your wife at least weekly - such as when you go shopping or to your doctor. You will need someone to be able to step in and provide care for the occasional time without your wife and for emergencies.

If you are disabled or dead, you want family and friends to step in until long term help could be arranged. In the absence of all help, hope that somebody notices you are unable to function or that your wife is still able to call 911. The local authorities will place her into the hospital temporarily until social services can place her into a long term care residence. I shudder to think of your wife at home, unable to remember how to get help, and suffering neglect since she can't care for herself and you suffer too.
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Cover99 Sep 2021
Which is why it is time for placement, sadly.
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You are voicing the thought, fear that all caregivers have.
For long term I set up a special needs trust for my Husband when I had my "papers" drawn up. He would have been placed in a facility and the trust would have been there for his care. His daughter would have been made his Guardian at that point.

For emergencies I had my sister as a back up for something that would be longer but not permanent.

For day to day I did have caregivers that came in almost daily and their hours could have been rearranged to accommodate a "quick" emergency.

For you I suggest that you start now and have caregivers come in a few times a week. Not only will this help you but it will get her used to having someone else in the house helping her.
You should never be the "sole" caregiver. No one can be caregiver 24/7/365 you need to still have time for you.

If she has friends encourage them to come by and visit. If they are comfortable visiting if you had to make a doctor appointment for your self you could arrange with a friend of hers to stay with her.
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If there is a dementia resource center in your area, I highly recommend connecting with them to get information on local resources that could be part of your backup plan.
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All good replies here. I suggest you call you local chapter of the Alzheimer’s society also.
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Sadly, time for placement.
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disgustedtoo Sep 2021
While "placement" might be okay, there are other alternatives. OP isn't expressing any difficulty, but rather looking for suggestions about having emergency directions/alternatives in place, such as.

Check out places and perhaps make a deposit on a facility, just in case.

Have instructions drawn up and held by atty and a responsible party.

Hiring help who can be there to assist for as many or few hours as needed, who can also check up on you daily.

If there are no close or trusted family members, then an alternative should be chosen who will manage everything. A good EC atty can assist with long term planning, recommend fiduciaries who can manage finances for her, get guardian appointed, etc. Planning should include both short term and long term situations (short hospital stay, longer stay, your untimely demise.)

It would be best if you could find the place for her that you would prefer her to be in - if they can take a deposit (refundable is best!) with no time planned, just an at-will, that would be great! If possible, have a secondary option available, just in case. Your instructions could specify preference and even stipulate she move from option 2 to option 1 if space opens up.
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Discuss issue with non-near relatives and see if/what they might take on for your wife. Maybe have her placed in memory care near them where they can look in on her from time to time and act as her advocates making sure her needs are being met. Would they be willing to take on DPOA duties and make sure bills are paid?

If relatives aren't available check into Companies/professionals that take on the administrative duties of DPOA to make sure her bills are paid.

Make an appointment with an elder care attorney and see what options are open for the continued care of your wife if something happens to you. They should be able to help you draw up the appropriate documentation and maybe a trust for her.

I'm so sorry for the two of you, she is so young to be going through this. Remember to take care of yourself as well as her. Blessings on you and your wife.
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disgustedtoo Sep 2021
"Would they be willing to take on DPOA duties and make sure bills are paid?"

I almost mentioned assigning an alternative POA in my comment, but caught myself! Unless the wife is capable (doesn't sound like she would be) of appointing the POA, then it would have to be guardian/stewardship.

The EC atty visit is highly recommended. They help with long term planning and can recommend fiduciary who can take over financial duties if no one is available or wants the guardian/stewardship. A guardian would need to be appointed, so it would be best to have a place selected and "reserved" if possible, for her AND have hired help or someone who can check in daily to ensure all is well!
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thecoinbox: Imho, check with your local Pittsburgh, PA COA (Council on Aging) and also the Alzheimer's Association. Btw, when I had to move out of state to care for my late mother in her home as she was adamant about living alone seven states away from mine, I was almost 70 and I was the sole caregiver. I also required surgery myself, but that had to be placed on hold.
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OldArkie Sep 2021
Local Area Agency On Aging works with DHS and I went to them for answers and got nothing but bad news and worse news. Until we become paupers, we get no help. after we give every dime (nearly) to the nursing home, then medicaid will help. Instead of suggesting things to help, she said "you better get yourself a eldercare lawyer...soon. I know they are expensive but they will help in the long run"
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HI there. We are basically in the same boat. I too took early retirement to be with my mom amongst other reasons. We had so many plans and 3 days after my retirement started mom landed up in hospital. She was in and out for 3 months. I think the medication she was given also took her dementia to a whole new level. She has never been the same. We have relied on each other for forever and I told her I would never put her in a home. We are bothe facing health challenges at the moment but her dementia far outweighs my stage 4 cancer. It is vicious. I have a brother who is living his life oblivious to the drama going on in ours. He is supportive but only when I ask him. If something happens to me he knows nothing of mom's habits, want and needs. He has no idea of her financial situation. I have made him promise that he will look after her but my fear is he will not be as involved as I have been and my mom tells me she lives for me. It is just a mess but I have to believe that God has a plan. That is what I'm clinging too. It is a very lonely road you are traveling and if you feel anything like I do, you're trapped but love and loyalty prevail. I would suggest that you let your relatives that are far away know what is happening and have some sort of arrangement that they will at least take temporary care of your wife should something, God forbid, happen to you. At least until another plan can be made.
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