Trying to decide whether to continue being the sole caregiver for my 84-year-old wife with Alzheimer's and other medical problems. Any advice?

I’ve been caring for an elderly parent for 4 years now. Unlike many of those responding, I do NOT work in any kind of care facility. I have seen the kind of facilities which they say just don’t exist any longer.
Social security and Medicare will not provide enough revenue to provide the utopia they advocate for.
You can only speak from your experiences and your heart. I understand your concerns.
Let your conscience be your guide because you’re the only one who can answer that question.
Did I do the right thing?
The day is rapidly approaching when I too will have to make that choice.
I reached out to my state and county aging services depts. As a result of that call my family member was determined to be a High Priority for services. It has been 3 years now. Just a couple of days ago they made what I suspect is their annual call to determine if the individual is still alive and confirmed that yes they were STILL, a high priority.

Good luck to you Sir.

yes you will. I, too, and the primary care giver for my husband for the last five years . I am 67 he is 78. I wonder the same thing. You have to find a hobby that you can take time for yourself. In the beginning guilt will be bad. But, push forward

I did face this dilemma with my husband. At some point you realize that one person is not enough to take care of your spouse. I did the research and found a memory care facility that I thought would meet his needs and explained to him that I could no longer take care of him safely by myself. It was traumatic, but the right thing to do for him (and me.) I was able to visit him every day, but no longer responsible for the exhausting daily (and nightly) care. It is our responsibility to see that our spouses are taken care of, but at some point, we need to pass the baton on to those that can help us do that. It sounds like you have reached that point.....

OldArkie: Perhaps it is time for a managed care facility.

I would suggest start slowly before making a drastic move for her that might leave her feeling abandoned and you feeling guilty.
First evaluate any family support or children that you may not have even directly asked them to help. Some people may know that you have given your entire life to her care, will commend you for it, and some even toss out a few - do you need anything? Those are the people that you have to directly and specifically ask for help: I would like to spend a week away from home. Can you come and stay with the Mrs? If you have children and there has been ANY discussion of what they will inherit when the two of you are gone, make sure they all know there is about to be large deductions out of the pot of gold.

If this isn't an option - you've asked and been turned down - then it comes down to finances. Can you afford to pay for round the clock care in order to take a week off? If there's children who won't step in to help with caregiving, would they split the cost of 24/7 care so you can get out of the house?

Have you thought about selling the house and moving into a facility with both assisted living and maybe a little higher level of care for wife? Facility type living might work better for both of you - you could walk out the door to enjoy life knowing she has the 24 hr care she needs. You could still visit with her, as a visitor instead of wearing yourself out in the caregiving role. It would keep both of you under the same roof while allowing you some freedom -- and no worrying about keeping up a home/lawn/etc.

Hard decision for you...peace in whatever you decide to do.

Yes, I understand your dilemma. My husband with PD and progressing aggressively shows me that time would only tell what is going to happen, but, for me putting him in institution is not an option, as I would feel similar to how you feel.
However, I came to accepting( most days) his condition will not improve and I had to start create my own life. I am neither introvert/extrovert, so I want company, friends, but I don’t need them all the time. However, I am never lonely and I need almost every day few to several hours on my own.
I also have great need to travel again and soon this is going to happen.
There is no drama here as we have respite care so I have time to go out with friends or do other things.
At the same time I recognize my husband’s needs to have good friends who invite us and vice versa.
Recognize your needs and have them met, create life on your own, join some clubs, interest groups or take short trip at first. You are talking care of your wife for years, I have done the same with every doctor, specialist, going for every test, second opinions, isolation during covid, injuries, surgeries and there is nothing more to do, the rest is beyond my control. Now I have to rebuild my life, I have overwhelming need to move forward, my needs are becoming more important in order to remain happy and able to continue.

my husband is a bit more functional than your wife (he still drives & dresses himself,) but whenever i'm gone for more than a couple of days i hire someone to come in & check on him. every day. and i take 2 10 -14 day trips every year, as my sanity breaks, to prove to myself that i can handle being out still. i also make sure i get out to hike & kayak & attend rotary meetings, just to keep my connections with people who can converse normally, as fully functioning adults.

I'm providing similar care for my husband with vascular dementia and we are only 3 years into this progression. I have been in counseling which has helped me greatly to see that it is imperative that I take care of myself as well. I have a medicare advantage plan and they offer free of charge AbleTo. Which is a counseling program that helped me so much with my feelings of guilt, frustration and fear, and despair as I watch him deteriorate.
I love my husband deeply and I can't imagine being able to do this without that kind of love. You are a person of great integrity. I commend you on that.
But one thing I have learned and am learning is that you absolutely MUST take care of yourself. Please don't let another day go by without starting that process.
Pam

63 years, and you have never been close?

Did you marry in extraordinary haste?

You can "commit" her - not the word I'd choose, but I'm sure we mean the same thing - and continue to oversee her quality of life, you know. Living in residential care does not end a person's relationships.

Why not begin with respite care, which will give you both some time out and an opportunity to see how your wife adapts to receiving care from others.

Many decisions. You can get home care to get a few hours here and there. You can do respite care n a facility for 30 days at time. Or medicaid if no money. Will let you stay in house and keep 1 car and I will think 100,000 until you need it. Th re is daycare available for Monday through Friday daytime. Depends on what you want.

I called our GP after my husband suddenly couldn't walk. He has vascular dementia. She referred him to Eden HOME Care and Eden Hospice. He was accepted into hospice. They come to our house several times a week. Medicare covers all of it. I believe our health insurance also covers home health care.

Now is the time to place her in Assisted Living and announce your retirement from nursing: everyone deserves to retire............the lucky ones live long enough to do so.

So, how about a facility somewhere between the casino and the beach you long to linger at? When you're not busy, you can drop in on Mom and play a game with her. Since she is sharp, perhaps you can get her a computer where she can play Lumosity and other challenging games. (https://www.lumosity.com/app/v4/dashboard?ll_ad_id=4010&ll_lesid=)

Make your announcement to mom and then invite her to go look at the facilities so that you don't have to make the decision where she goes.

You need respite and the solution is easy. Hire a private care-giver who you feel is a good fit for the amount of hours daily that you can afford. Your wife will get used to it and most likely will have more interaction than even you can provide. This will give you both time away from each other to give you the "me" time you desperately need, and her the time to trust another care-giver, in the likely event she will need even more in-home care or facility care. Don't keep putting your life "on hold" - start looking TODAY!

Wow. You are doing so much for your wife. I am amazed. There is a program called TSOA-Taylored services for older adults that would provide 20 hours of in home care. It takes some fortitude to fill out all the forms but it would be worth it for you I would believe if you qualify.
taking care of you is taking care of your wife.
I am blessed to have a wonderful friend that talks to me every day and encourages me, who watches over me while I take care of my husband who has to have a catheter and doesn’t understand why he has to have a catheter. I have to watch him very carefully so he won’t pull out the catheter or the leg bag. My husband and I have been very close and so it’s very painful for me to see his decline.
I would encourage you to reach out to other people for help. Have you?

I invite you to join AARP Family Caregiver Discussion Group on Facebook. There are soooo many empathetic and wise caregivers there! Among them are: caregivers caring for a spouse, an adult child, parent(s), and others who have multiple people that they care for daily. I believe you will feel less alone and receive excellent advice there, whenever you need it, 24/7.

As for your question, the answer is found when you seek to balance the equation. There is an imbalance in your situation and your mind and body are telling you to seek it. Your financial well being may define how well you can balance it. But, balance it you must. You only get one go through this life and your life matters too. ✨️

Wishing you peace and well-being in mind, body, and soul.

Heather

Look into respite for yourself; you have shouldered, admirably, your wife's care out of commitment to your marriage; that said, you are not required to sacrifice your self to her situation. Respite is to recharge yourself, protect your health and sanity, and help you endure to the natural conclusion of your wife's live, as well as your own. All the best. If and when the time comes your wife's care needs are beyond your capacity (which is different for every person and legitimate) the responsible thing to do is to place your wife where she'll get professional care; that is not 'abandonment' or 'committing' her (in the old fashioned sense of 'commit' someone, as to an institution) but meeting her needs, while preserving your health.

Dear sir, have you checked into what's called " Provider Services " Each state has some variation of that. Typically dept of health a d human services will assign a case manager upon request for those services. You have to meet a financial requirement. If you do they have someone come out several time a week a few hours a day to help with things like; dressing, bathing, grooming, light housework and cooking. The other thing is you can ask your primary care MD about what's called palliative care. They can come and assess the patient appropriateness for services and even offer respite care for people in your situation that that need a break to go take care of personal needs. I would start by telling your primary doctor of your concern and that you need a social work referral to start working on getting some type of ",provider services" or ",respite" care. You must take care of your own physical and mental health first. It's like when you are on an airplane and they say in the event of an emergency put on your oxygen first then help your child. You can't continue to be all the way there for your wife if you are feeling burdened and fatigued.

I am facing this dilemma now. I am sole caregiver for my husband who has Alzheimer's. It's not so much, the care I have to give him but missing my partner. We can't go on vacation, out to eat, visit friends anymore. I miss my life. No, I haven't resolved this problem and it could go on for a lot longer. One of my biggest fears is when this is all over, I will be so broken that I may not be able to travel and living alone scares me to death. We are both in a world of hurt and at our age, making a new life is hard. Good luck.....

Good Morning,

Scratch that...I apologize I thought it was your Mom, but I still think you are a great person! Do you have a single brother, most woman would love to meet a devoted man like you!

We arranged home care for our mother for years until her memory, behavior, and skills deteriorated to the point that she was a danger to herself and maybe others. She wanted to live at home with part time caregivers but we moved her a few months ago to a memory care facility. We were always one phone call away from disasters like the caregivers getting covid, her falling, or a caregiver quitting. We felt guilty and sad and she lashed out at us but we now realize that this is the best for her and for us. She now accepts this, grudgingly. You have done a great job for many years taking care of your wife with little or no help. However, she needs to be in a proper long term care facility for her sake and for yours, given her needs. You should feel good that you have helped her this long, but you cannot sacrifice your life and happiness forever, and she will be safe and well cared for in a LTC home. It will take some time for you to come to terms with this, but you can do it. All the best..

Try and find some home care you can afford. Even it is only 1 day a week where you can get out and do something you enjoy.

You have done your duty and you need to take some time for yourself before you are unable. Yes, she may not be happy, but as you said her memory is done by end of day.

Everyone including me, agrees that you have done a wonderful job for many years but it is time to change. Placing your wife in Assisted living or memory care is the best thing for both of you.
I am curious about one thing in your post. You said her mind was still clear enough that she understands things but her memory is gone day by day. Has she been to a neurologist and been officially diagnosed with Alzheimers? Or could she have just short term memory loss or one of the many, many other forms of dementia?

Also be aware that with all her medical conditions and need for bladder cathing, etc. she may not be a candidate for memory care, or even assisted living. A skilled nursing facility (nursing home) may be your only option.

It's time for you to get all the legal work done so you can get her placed. Nursing homes often have long waiting lists. An elder care attorney will be able to guide you on what you need but at the very least a power of attorney and health care proxy should be in place.

Best of luck to you.

Sounds like me I feel your pain.

Ireland's response below is spot on except she got confused and thinks you are caregiver for your mother and not your wife.

Its time to get relief and help for yourself. Ask wife's primary care for a social worker to sort out what is available. At the very least a caregiver could come to your home several times a week. Get some housekeeping help also. You can get groceries and prescriptions delivered to help.

Can you reconnect with friends, neighbors or family?
If not maybe join a church. Look through facebook or the newspaper to see what social activities are available near you.

You deserve time for yourself while you can enjoy getting out!

I think that you should contact the Hospice of your choice.
Have her evaluated to see if she would qualify.
You would have a Nurse that would come at least 1 time a week to check on her.
You would have a CNA that would come at least 2 times a week to bathe her, dress her and change bedding if needed.
You would get all the supplies you need as well as any equipment.
You would also have the ability to have her placed in Respite Care for about 1 week so you get a break. (This is covered by Medicare, Medicaid and other Insurance, a great benefit of Hospice)
And you would have the ability to request a Volunteer that could come and sit with her for a few hours. They can do no hands on care (no medications, changing)
If you decide that placing her is the best option the Social Worker that is assigned on the Hospice Team can help find a place that would be appropriate and may even be able to "fast track" getting her in, many facilities might have a "waiting list" but with a Hospice admission they realize the resident might not be there long term (sorry to be blunt. the typical Hospice "6 months or fewer" is a guideline there are many that are on Hospice for longer and many more for much shorter lengths of time.)
But Hospice will give you all the support that you need.

I see nothing wrong with bringing in someone to help with her care. Your character is truly commended! Hire a friend, family member or caregiver to help with the slack. I don’t see it as selfish and I understand your point of view. Your morals will help you find the balance then make peace with it and enjoy your “me time!”
Wishing you the best😊

Good Morning,

You could start with speaking with your mother's primary care doctor (PCP) and say "call on the troops", basically have the PCP write orders for as much home care as your mother needs and is eligible for on her medical (VNA, p/t, o/t, speech, home blood draws) as well as the Church people--it's never too late to join a Church. Our parishioners come faithfully every Sunday!

I don't know if your mother's situation is too far along but perhaps a 4 hour, once a week respite day program. They have them for Dementia patients with different stages. Sounds like you would need a "medical" model with an RN on site. Many have transportation.

The no emotion is difficult because they can't help it, they lose empathy when the mind ages. I know you miss speaking to your Mom, me too as she was always someone I could confide in and tell everything but now it is a daughter-patient relationship.

You can do a lot of virtual tours--every place has a website. Sounds like you are out of gas. Maybe you need a vacation. Speak with your Mom's PCP and see what they come with. You have to make the changes along with the stages that your loved one is in. You sound like an outstanding person who has a good moral conscience. Every mother should be so fortunate as you sound like you are a son that would make any mother proud!

Hang in there brother...

My situation exactly. Also taking care of spouse with lymphedema. I don’t know how to deal with it either. I resent the fact that my sister gets to do whatever she wants!!! I’m looking for answers too

You are a very good soul, the type of man that can be counted on. You are admirably loyal and selfless. You sacrificed, above and beyond, and more than enough.

At this point, if you don't make arrangements for the new guards to take your place for all those many hands-on duties, then you will have set her up to perhaps loose her only champion. You are not abandoning her. You are securing help and saving yourself for the both of you. It's time.

There are many great recommendations from the other responders to your post. I can't add anything other than to say please take note and follow their instructions and steps to get help from professionals.

You did good, super good. Now catch a few rays and enjoy the view of the horizon from a beach. Put a chip down for us.

You need to review the information on Palliative and Hospice care especially for an individual with your wife's health issues. Once you are comfortable with the information speak to her primary doctor to do the necessary paperwork to have your wife assessed for Palliative or Hospice care.
If she is accepted into either program, there are benefits that will not only provide her professional care but will give you the rest to breath easier knowing that she is being helped and cared for by positive people. Take advantage of the services that these programs offer to caregivers because YOU need support and care too.
I'm glad I approached my mom's primary doctor to ease the caregiving my sister who lived with mom needed due to my sister's increasing health issues. At times, mom who had progressive congested heart failure and ad fib seemed healthier than her daughter. We were fortunate that mom did not decline mentally and was still following her stocks daily on CNBC.
I cannot say enough positive things about the Palliative and Hospice care my mom received from these services. The CNA was the same person when she began twice a week and continued with mom when we increased to 5 days a week and transferred mom to Respite care. The nurses were great -- and always available 24/7 either in person or on the phone. The social worker and religious care were fabulous. When the religious care volunteer visited I would leave the apartment so mom would have private time with her for praying and speaking her mind without me in the background.
You deserve to have time for yourself and to participate with others. If not in person, perhaps taking a course or seminar online via Zoom to interact with others would be helpful. You definitely need a break and investigate what is available for you and your wife.