Help me cope with taking care of Alzheimer's mother.

My husband passed away three days ago after being progressively sicker for six years. This post might be too sensitive for you, but for me, it’s a form of therapy.

My husband had a stroke 6 years ago, recovered, started dialysis and then lost his ability to walk for unknown reasons. He was total care for about two years. He had some dementia, but not full Alzheimer’s. He was blind due to occipital lobe strokes. He forgot how to speak in the last two months and had a bleeding stroke and brain tumor discovered near the end.

He was at home with me as his caregiver the entire time. No other family. A few friends helped here and there. I fought and advocated for everything that would possibly make his life better. I even got certified in August in Hemodialysis so I could perform it at home because leaving the house was strenuous. But, It came to the point that I knew I couldn’t do anything more for him.

He was suffering. In the last 12 hours, he wanted to eat (about 5-7 bites), but even puréed food was aspirated. He could not lay down and breathe because of bronchitis that had followed the pneumonia 10 days prior. He could not follow instructions to inhale from the nebulizer to expand his airways. And after he spent the night in his wheelchair, propped up so he didn’t fall out, I felt absolutely helpless. I knew he would develop sores if he didn’t lay down, but ability to breathe trumped the danger of sores, so I kept him there that morning. I could not do anything more for him and it was awful.

When the pulsox couldn’t read his vitals later that morning, I called 911. He passed away peacefully after the EMS arrived and I stepped out of the room. He knew I was not alone, and I didn’t have to see that moment of urgency as they checked and confirmed it. He was DNR.

We fight so hard to keep our loved ones alive, but their/our time here is limited. I believe in the hereafter, and I have already had interactions with him in dreams. He’s not here in the same way, but his decline had prepared me for that. He’s no longer suffering, and I know he appreciates everything I did for him.

I benefitted from connecting with a grief counselor/pastoral counselor starting about 2 years before his passing. She taught me how to weather the stress and challenges. Also, it was nice to unload everything on her rather than family or friends.

I wish you peace, but also know that anger is part of the grieving process. (I was shouting swear words, but thankfully was able to keep it all in my head.)

*Hugs*

Dear "Cyprien,"

I'm 58, married, no children, no siblings and no extended family here. My dad died in 2004 and I had overseen my mom for ten years until she was diagnosed with Alzheimer's at the age of 89 in 2014. I would run back and forth from our house to hers until I couldn't do it any longer. She wanted to remain in my childhood home for the remainder of her life but, that just wasn't realistic.

I did move her into an ALF in early 2015 and then had to quickly clear out her house in order to get it on the market as the proceeds would be used for her rent. It was very difficult for me to do but, there weren't any other alternatives. Home care was too expensive and she couldn't live with us in our two-story house which was very small and had both bedrooms and bathrooms upstairs plus I knew it wouldn't be good for my marriage even though my husband loves her and thinks of her as his mom.

I understand your anger and frustration too - I could not accept the diagnosis as I never dreamed she would get the one disease I dreaded. It took me a good three years to really get myself to a place where my anger and sometimes even rage became a thing of the past. Believe me, I remember when I would get a call from the facility with something that was needed and I'd get in my car and pound on the steering wheel from the stress. I've learned to be much more patient as I knew she didn't need to see me falling apart - she need me to handle/oversee her care. I didn't want her to worry or be anxious about any of it. I wanted her to live the rest of her days feeling secure and trusting my judgment when it came to making important decisions involving her care.

She nearly died in April of severe dehydration and COVID but, survived and was under hospice care until Friday. She is in a new facility in their memory care wing and she likes it there and the staff treat her really well and I have a great rapport with them as well. That's all I can hope for and be grateful for.

I wish I had specific answers for you but, all I have to offer you is understanding and letting you know I've been where you are.

You'll be in my prayers that God would give you wisdom and direction in how to deal with and accept the situation at hand.

May I offer a suggestion for you to consider? I’m the oldest of 4, and two of us were raised as siblings.

I lived about 20 minutes from our LO who is now in a VERY good AL, and am one of her POAs. The second POA lived less than 5 minutes away from her.

At some point, he promised to serve as a co-caregiver with me, but soon chose instead to move 1,000 miles away, leaving me with any hands on care that was needed before the Covid lockdowns.

Fortunately, I knew before he was gone that there’s no benefit to me to try to enlist help that would be grudgingly given. I expect NOTHING from him, and am no longer disturbed when no help comes forward.

IF YOU CAN, allow yourself to write your two siblings off completely. Concentrate entirely on reducing the pressure on yourself, by using whatever resources YOU HAVE to get the additional help you need. If your mother has financial resources of any kind, use them to secure respite coverage for yourself.

Is your mother eligible for any public services via Medicare, Medicaid, veteran’s survivor benefits, private philanthropy?

My mother lived for almost 5 1/2 FINE years in a SNF a five minute drive from me, with visits from me every day. Her previous life, while independent, was lonely and difficult. She expected to live and die in her home, but when that became literally impossible, I made the best choice I could, and became her ally, protector, and friend, as I had been before she became totally disabled by a totally shattered broken hip.

Life “in Covid” is different, and my present LO has suffered from the effects of it, but for her, residential placement was certainly NOT “....death in short order....”. If you are willing to consider your mother’s life to the point where you are unwilling to view your own life with compassion and objectivity, it will become more difficult as your mother’s condition continues to become more care.

What you are “becoming” may be resulting from your sense of self preservation, and that’s not a bad thing. You are fully entitled to decide FOR YOURSELF, that you will choose to care for your mother until residential care is once again safe, or your care cannot safely manage your mother’s needs, or any criteria you choose.
Don’t let any trace of guilt impact on your judgment as you decide where you want your circumstances to be in a month, 6 months, a year.

Many of us have been where you are, and learned that “balance” is not really balance unless YOU are a part of the equation, and not just the party who is doing 100%.

I found much help by attending a support group generated by the local chapter of the Alzheimer's Assn. IT is not for everyone and I was never a group person...this one turned out to be a special group with a sense of humor and wonderful participants all. We learned from each other. Also it was limited to adult children. We also were blessed to have an outstanding facilitator who knew when to add and when to let it roll. Regrettably she left as the chapter began to focus on being volunteer led. One by one participants stopped showing up as the volunteers or a staff member would show up to lead and some were very directive, lecturing and jumping to inaccurate conclusions. They held the reins so tightly that sometimes some people never had a chance to contribute or be heard. About the 2nd or 3rd time that happened, I dropped it. I miss what it was. But when it was good, it was very very good. You are right to recognize the signs of burn out and I urge you to not neglect your own well-being. I've probably said this at least twice on these pages, but I learned the lesson a very hard, terrifying and expensive way...My 104 year old father thinks he and 98 year old mom who "has a problem" (it's Dementia/mixed type) are very independent. He's delusional. And deaf. They manage because I am the one coordinating and doing. Cooking, cleaning up after them, laundry, linens, bill paying...and a few months ago it caught up with me....I had what they called a dissection of the aorta which is often fatal. That's right, I'm lucky to still be here. I am NOT doing what I did for them. I wound up in the hospital having a major surgery. And they survived. I have changed my ways. For now we manage with take out and frozen and the world has not come to a dramatic end. I am ordering groceries for delivery. I have stopped cleaning beyond the areas I get messy. Neighbors have been supportive as I recuperate. It is so not worth sacrificing your own life. And while I happen to share your feelings in re to nursing homes especially now with not being able to visit due to Covid, if she stays at home, you have GOT to get some outside help in. Find a trustworthy reliable agency that is taking COVID precautions. IF the idea of a group meeting turns you off, consider a private psychologist or even the Alzheimer's Assn may have a social worker you can talk to. Just don't do nothing and don't let yourself collapse from this insanity. Is there a local office on aging to help? Call city hall and ask; if not every area of every state is covered by a local Area Agency on AGing....They can help guide you to in-home service....Unfortunately, you are NOT alone. We're with you and sending hugs and prayers. Your siblings, sadly, are not unusual. My own BLAMES ME for my illness while she is not doing anything. Can't even acknowledge an email. She has no idea of what she is being spared no matter how many notes I send telling her the latest miserable thing our mother did. She helps by ordering items via Amazon which is a big help....but where her tasks don't involve pressure or physical effort, all of mine do. Her not calling to see how I am or respond to my emails has greatly hurt me. I still can't help myself from caring about her and trying to communicate. If you aren't going to listen to me to protect yourself, then all I can say is get your legal stuff in order....to play it safe...because WHO is going to be there for you...speaking as another single in your age band. The crisis with me was a real eye opener...people I expected to be there for me were not. People I didn't anticipate surprised me and were such a blessing...but know in your heart that you are a truly good and caring soul. I pray karma finds her way to us both!
sending hugs...

Cy, you are burnt out. You need a serious break. Three years is a long time to care for someone with Alzheimer's disease. I did four then couldn't any longer for several reasons. Mom then went to a memory care facility.

You don't want mom in a nursing home. Why do you hesitate? You deserve your own life and isn't that what mom would want for you? Can you get sis to take on some regular time with mom? Five hours o the weekend maybe?

You need to take care of you or you won't be good to anyone. Something has to give it may be you.

One of our gentleman posters here who's lost a wife to Alzheimer's posted a quote the other day which I kept in Word. Here it is:

Too long a sacrifice can make a stone of the heart
~ William Yeats

My cousin took her mother in to live with her when she developed dementia and went into a wheelchair. After about 18 months of having my Aunt live with her in an upstairs bedroom, she called to tell me that my Aunt was dying. To come over to see her if I wanted to say goodbye. My husband and I rushed right over to see her, right then and there. She was withered and small in that bed, definitely looking as if she was ready to pass. I kissed her, held her hand, reminisced with her a bit about the old days and memories we shared. She was pretty much out of it, but I did get to say my goodbyes. I was in tears as we left the house that day.

Fast forward a couple of weeks. My cousin, for some unknown reason, decided to place her mother, my Aunt, into The Dreaded Nursing Home at that point because she hadn't died after all.

My Aunt went on to live another 3 years, happy and quite healthy, in that nursing home where she had good care, companionship of other elders, 3 hot meals a day and several activities to keep her occupied. She rallied, in fact, and my husband & I went to see her several more times over the years before she finally did pass away.

Living with anger and losing your temper isn't healthy for you, or for your mother. Living in such an environment isn't better than her being placed in a nursing home, nor will placing her mean 'death in short order.' You have convinced yourself of something that isn't likely true. And have subjected yourself to a life of anger and resentment as a result.

My mother has moderate dementia at 94 years old next month. She lives in a Memory Care Assisted Living home 4 miles away where she's beautifully cared for by a team of 24/7 caregivers. I would never, under any circumstances, have her living with me b/c she and I would be fighting a LOT if she did. Like she and my grandmother did when I was growing up and mother felt obligated to care for her in our home, ruining my childhood. It was her misguided attempt to 'do the right thing' and it backfired. After 25 years, my grandmother was sent packing to go live with another daughter 2500 miles away. That lasted for about 2 months before that daughter placed her in a nursing home. She too went on to thrive in the nursing home for several years before passing away at 91. With a smile on her face, in her sleep, by the way. We are all grateful for that.

Life is filled with choices. There isn't only One Right Choice in such a situation. You matter too. Your life counts, not just your mother's. Do what's right for BOTH of you.

Wishing you the best of luck dealing with all you have on your plate. Sending you a hug & a prayer for peace.

Let me ask a question. Are you for the most part the only person your mom sees? Don't think of the nursing home as 'death in short order'. Becoming a resident in one would give your mom what she's probably not getting - socialization with other people her age. She'd be with other people in a controlled environment where they can provide activities and socialization for people with Alzheimer's/dementia. Sometimes the best thing for a senior is not for them to be kept at home because home can be a cold and lonely place even when their caregiver is doing the best they can to do right by them. You don't have a staff of people to help you.
I've done in-home care as a job for a long time. I took a case for an old woman who had Lewy Body Dementia (which wasn't severely advanced when I started but it became so), mobility problems, and was becoming incontinent. She was declining quickly. Her husband at the time was still living and able to still have a life. She was for her whole life a very social person with many friends and always on the go. For the most part I was the only person she interacted with. Her husband would go for the day and only see her for a few minutes in the evening after I put her to bed. Then he died. Her friends had stopped coming around because it was hard for them to see what she'd become. Her kids were all far away and couldn't visit often yet they insisted she be kept home because it was cheaper then a nursing home. She would have at least had some quality of life in a nursing home with other people and some socialization. The few times she spent the day at adult day care she totally loved it. They wouldn't let her continue though because she was incontinent in diapers and that was their rule. It would have been kinder to place her in a nursing home. I think it would be kinder to place your mom too. Loneliness and inactivity makes dementia worse. They will go down faster then if they're getting regular socialization and activity.

I took care of my mom for 15 years and the last five were extremely difficult. You need a good support system. I could not have done it without my best friend. Just wait until you have to manage her bowels and diaper her. I had to make certain she had a bowel movement every Tues, Thursdays and Sundays. If she had no bowel movement on the fourth day she would get impacted. Her bowels movements were the worst thing about caregiving and after she has them you have to make certain her private area is well cleaned or she can get a urinary tract infection.

If you cannot do that you had better put her in a nursing home.

I lost my mom not due to Alzheimer's but decades of being insulin-dependent diabetic and kidney disease. Mom's feeding tube kept her needs met, but that was hard work in itself. I do not regret caring for mom. Her final years were very peaceful and wonderful (for her!) and I never had to give her any narcotics or psychotropics. She also died with perfectly good skin. I really took care of her. Because I love mom and it kills me inside she is forever gone. The blessing about Alzheimer's eventually they will no longer realize they have it and the worry and fears of life go away, and just keeping her comfortable and needs met made her very happy. Mum was on hospice for 2 years and they supplied me with diapers and other needs and renewed her routine medications and routine lab work.

You are losing your mom. We all die. Since you say you are 69 your mom is probably in her late 90's.

Hello. My mom is in a similar position, caring for my grandma with siblings who don't care. She says the same exact thing, that she doesn't like who she's becoming. I feel lost myself and don't even have my own answers for our situation, but I did want to tell you what I told my mom - which is to be easy on yourself. I know that's much easier said than done, and ultimately doesn't give you a practical solution. But sometimes it can help to hear from another person. It seems you take accountability for your behavior, but also remember that you're in a vulnerable position, in survival mode for yourself and your mother. You aren't defined by losing your temper in distressing moments. And if you can recognize that you don't like that part of yourself, you're still in touch with who you really are at your core. Which is more than some of us can say. I think you know that if you don't preserve this part of yourself you won't be the best person you can be caring for her, bringing yourself and her more pain, confusion, heartache. While on the other hand, getting her placed somewhere else would give you time to take care of yourself, and be able to check on her while people trained to handle this kind of thing do so. I'm glad you posted and hope that you get something out of these replies. I wish you the best.

Imho, no one person can handle care for someone with dementia single handedly. You must seek respite through any source possible. Prayers sent.