Coming to this post three years later, since it was shared in aging care’s daily digest. Everything in this resonates for me and I appreciate the directness and compassion that is evident in the way you wrote it. I have shared it with other friends who are living through similar situations. The short version of mine is that I live in the Washington DC area and my parents both have dementia and are in a senior community in San Jose California. One with exceedingly advanced vascular dementia, the other with exceedingly quickly progressing Lewy body. I am primary for them among my siblings and myself.

if I had one friendly amendment to offer it would be the following:
“#9 It’s a blessing and a curse to live 3000 miles away from your care recipient”
If you are the primary family caregiver and don’t live very close to the care recipient, you are still the primary caregiver. Even if your care recipient lives in a great community and you have a spectacular hired caregivers. Don’t dismiss or understate your role or the toll it takes on you. Many of the other comments and suggestions here are especially vital if there are no siblings, spouse, or children nearby to provide day-to-day interaction with the community or the caregivers. Some days you will feel relieved to hit “decline “when a call comes in from the area code where your family members are. Other days you will be obsessed, waiting for that call or the attempted video call with your loved one who is slipping away. If you are able financially, you will want to fly or drive to where your care recipients are at the drop of a hat when “shit happens.” But that may not be the best thing for you, or your loved one. It’s tricky. And exhausting and distracting. And rewarding. Above all, be patient with yourself as much as possible.

Country mouse, I have an appt this Friday to discuss options.

GranJan I can't possibly "like" what you've posted, but I would like to thank you for describing what is happening and to send you a virtual hug.

Are your doctors investigating the causes further?

I am the person in our home that has dementia. My mother died of alzheimer's 2 years ago at age 92. I am 67. I was diagnosed with dementia after my husband insisted I see a doctor. An MRI determined it was not Alzheimers. The doctor prescribed Memantine and Donezapril. I have good days where I can think and remember clearly but I also have days where I cannot. I have always been considered a good cook, but now I find I can no longer follow a recipe. I have trouble organizing things and events. I now do things I would never, ever have done in the past. Recently, I used profanity in my Sunday school class. I was so embarrassed and I don't understand why I did that. I hate what this is doing to me and I hate what it is doing to my husband. I just want my mind back.

Like so many others here, I was totally blind-sighted by my mom getting Alzheimer's. I originally thought that Alzheimer's just involved a loss of memory, but it is so much more than that: cognitive decline, personality changes, etc. I even wrote a book about my husband and I taking care of my mom: "My Mother Has Alzheimer's and My Dog Has Tapeworms: A Caregiver's Tale." For me, I changed my perspective from, "I 'have' to take care of my mom, " to, "I 'get' to take care of my mom, " and that made all the difference. Since she had some good days, I felt that my caregiving role gave me more time with her, so I convinced myself that those good days overshadowed the days when she wasn't really "her" any more.

caringson12, you said it well. Those basic truths that I wrote about 3 years ago should remain somewhat timeless, but additions are always welcome. You've made another good point.
Take care,
Carol

How right you are. My brother and I had POA, legal and medical, over Mom. After she moved in with us I had it changed to make me and my wife POA as my brother lives 1500 miles away and we are her primary caretakers. He had no problem with that, thankfully. He even stated, if you have to put her in a home, put her in one close to you all. Enough said.

These were all true for me as I cared for my mom. I was pleased to see #3 as it was something that resonated with me. I even lost friends over my caregiving (not exactly friends I guess). Most didn't understand my journey and it was frustrating to hear them. However, now that the journey is over, and my mom has passed, I don't regret a moment of my dedication to her and I am at peace with it.

Unwanted advice is like arthritis, it comes with the territory the older you get. Some, especially relatives, or more than willing to give clueless advice and opinions. You can ignore, graciously thank them, or tell them to go to hell. It all, of course, depends on what it is, who they are, or what it is concerning, but it's bound to happen some time sooner or later. Good categorizing, Carol,
you pretty much hit it spot on. Nobody is perfect and caretaking can be one of the most stressful roles anyone takes on. Few have any idea what they are getting in to. Then once one starts, few can find a way out without major guilt issues afterwards. We learned early on breaks are a must for your own sanity. Just a few hours can make a huge difference. Adult day care, if only for a short while a few times a month, can change your life. Do what you have to do and watch after yourself first. If you don't then who will care for them then after you're gone?

Good article. Whoever said that legal documents are a truth of caregiving is 100% right. And I'd like to add getting training in caregiving. Whether that training is watching videos online or attending a seminar, training is essential.

Wow, that sounds so much like my Mom on many examples you gave, there are many days I just want to run somewhere and scream. Not all the time but she is totally consumed with her appearance yet her OCD is in different areas other than hygeine. That has become worse. Consider yourself lucky she WANTS to socialize, mine refuses to go anywhere unless I am right next to her. I have tried getting her to go to daycare and even found a group that only deals with people who have dementia and she said she enjoyed it but would not go unless I was with her. I wanted to scream, "The whole point is for you to be around other people besides me!"
She never forgets garbage night, beauty salon day, what she needs from the grocery but anything else I tell her I have to repeat at least 20 times!
My brothers that live close are useless, do nothing so it is all me. My husband wants nothing to do with it either. This is where I am grateful I chose not to have kids or I would be certifiable by now.
The selective memory is interesting with her specific type of dementia. Oh and she is always consumed with what other people think, how she looks, won't wear the necklace or armband that would save her if she fell and I did not see it because I was out or asleep. It doesn't go with her ensemble or makes her appear to have a weakness.
If she sees the neighbors have taken down their Christmas decor, then she starts taking hers down, gotta keep up with the Jones's! Even though I have to put it all away just as I had to put it all up for her.
She won't prepare any food unless it's something she can just shove in the oven and she used to be a great cook, taught me everything.
Yes, it is very hard dealing with a frightened insecure teenager that used to be the person you looked to for help, advice, how to behave, etc.
The role reversal is no fun. My heart is with you and I understand. There is no more logic or common sense, it is a hard thing to come to terms with.

I just received this article. Judging from the age of the comments it must have been written 3 yrs ago. The advice is just as valuable today. I would like to add before you take on the responsibility of caring for a parent be sure and have all legal documents your parents created reviewed by an attorney. Do not end up in the role of caretaker only to find out an uninvolved sibling can make the final health or financial decisions because of previously drawn up documents by your parents. Only take on the care taker role if you have full control over all decisions. I learned this lesson while taking care of my mother.

I love this site! Another Great article!!

I seriously was on the brink of a nervous breakdown from trying to do everything myself. I'm the youngest of 5. One of my siblings is deceased. He was the only one that actually ever offered to help. The remaining 3? Nothing. I was angry about it for a long time, but then it hit me. They've never been there before, when our dad was dying from heart disease. So why should I think they'd help now that their mother has Alzheimer's.

Thankfully my doctor saw my condition and put me on lexapro. It helped me stabilize mentally so much that I finally saw I couldn't do it all. I hired a day time sitter so that I could go to the office 3 days a week without worrying that my mom wasn't eating or was messing with the stove. "Detachment is vital for our mental health." Those 3 days in the office interacting with co-workers and friends have been a godsend.

I agree with and like Carol's explanation of empathy and sympathy. I'd just like to add Robert Heinlein's important caveat: "Do not do unto others as you would have them do unto you. Their tastes may not be the same." Just something to bear in mind!

This is true of much of life. People - often well meaning but ill informed - offer their opinions on how your should live your life when they don't really know about the unique difficulties of other people. Outsiders who've never been caregivers generally think that they are being helpful by telling us what we should do but they'd be much more helpful if they just said, "it must be hard." Your wife has the right idea.
Take care,
Carol

#3 fact is so right on. There will be those who will offer advice. It's offered by those who don't have a clue what works. Maybe they babysat a 10 yo once and that makes them an expert. After much dumb advice, my wife now says "If you criticize the way I do it, be prepared to carry me" She is just tired of it. She lost all her smiles when it comes to this.

Great article. I face a lot of frustration when my hubby is making no sense and he doesn't understand why I don't understand him. Sometimes I feel like I have to have a break, but, that's usually at night when no one is available Corinne

Redhead1, you are right. I think "bad days" is a catch phrase for when we have to surrender to the disease process in hopes that tomorrow/the future will be better, however, you have no idea what form that will take. Time to deal with our own frustration and feelings of helplessness, realize the brain is hurting, literally and they can't say that it hurts. Let them rest, try to do for them and not talk or cause them to feel discomfort to get through the day. Apologies go a long way to help ease their feelings, no matter what the complaint is about. Your feelings are real, but they are not in relationship at that point in time and may need your compassion/ heart energy right then more than anything else. -Hope this helps.

What to do when the caregiver is 87 yrs. old and he is having a bad day and he refuses any outside assistance. These things can undermine care for both and family is left on the outside unable to help.

Lynn, that separation is often vital - as you've so wisely seen. Many if not most adult children have resentments. Some are simply because when they were children they didn't understand their parents' reasons for doing certain things. Others are well earned, which seems to be the category that you fit into.

Separating your "old" issues for the current caregiving can seem like a super human effort. I'm stunned at the number of people who can do this after horrendous childhoods. Those of you who are in this situation - and that means you, Lynn - deserve special admiration.

Please keep us updated on how you are doing,
Carol

I came upon this article after an especially bad day with my mother. It gave me some insight, and the poem grounded me again. Sometimes, I think, caring for a close relative means separating all the past baggage of the relationship from the task at hand. I resent my mother for many reasons, but the person I'm caring for now is not the person whose behavior caused my resentment. It's hard to keep that in mind, or at least it's hard to keep it in the front of the mind, when a day has been exhausting. But for me, it's crucial.

It is so difficult. MY son actually was of tremendous help. He said he now needs time to get on with his life. They have postponed having a family yo care for Dad. Our loved one still can converse and certainly recognizes our faces and voices. He was in a memory care place called Emeritus. They push medications instead of recurring. They are terribly understaffed. They fall under assisted living so don't have to provide the memory care that is needed. Be aware of them. We are in a new facility now. My suggestions if you need to place your loved one: 1. Be careful that pretty fluff does no ensure good care. 2. Ask about a nurse on duty. 3. Ask about laundry days, current medication, who is in charge 4. Activities offered. Good luck!

Excellent, DianaRuth. It's far too easy to talk around the person who actually has the disease, but they are not babies no matter how impaired. They deserve to be treated with respect and dignity.

Dementia caregiving is most definitely a team project with the client as team leader, as I like to think.one more truth I always keep in mindis that no matter how regressed their behavior might seem at any given moment,they are not becomming children and should never ever be treated like a child, but with the dignity they have worked toward through the years, always keeping their accomplishments in mind.

While I cared for people multiple elders under several different situations, the last years of five of my loved ones were lived in a nursing home near me. Believe me, I know I was still a caregiver.

Even though I wasn't with them physically every minute, they were always on my mind. The knowledge that an emergency call could come any time kept me from totally relaxing. All of my vacation went to taking them to medical appointments. I'd run their errands and spend much time visiting. I was the advocate for them.

Yes, you are a caregiver and the truths apply to you, as well. No one needs to be constantly providing physical care to have all of the issues addressed and more. Sometimes, separation can be harder than actively working to "fix" a problem. You may want to re-read the article on you being a caregiver. You may want to just be negative for awhile - we all have those days. Just don't beat yourself up can credit yourself for all that you do. You are a caregiver and you deserve the respect that caregivers are due (though rarely get).

Blessings,
Carol

With this article I feel left out, even though long time ago I asked in this page if I was a "caregiver" having my husband in a NH. I received a Yes for an answer but I am still wondering, because mainly the support is for people who are taking care of their loved ones at home. Maybe today I am feeling very negative.

You spoke of many truths here, we must absolutely look out for our own wellbeing or we will not be any use to our receiver's. The good and the bad all go hand in hand, it is just unfortunate that bad days seem to be the ones that stick in you head. But it doesn't have to be that way, if you treat those bad days like water off a ducks back in other words don't take it so personally. It is not a personal attack on you, it is the disease, this is where empathy steps in. By placing yourself into their shoes how would you feel as your days are full of confusion, you are losing control of your on life, now independence is out the window and to boot you are losing the last part of yourself, your dignity. These are all parts of us that shapes our lives and we depend on them. Remember that this person needs you but most important this person needs you strong physically, mentally and spiritually. Bless you all for caring.

Stubbstein, I am getting the experience with FTD with my husband. Do you have questions or want to share experiences? At the caregiver support group I go to most everyone else has relatives with AD, not FTD, so their experiences are different. Have you read the book "What If It's Not Alzheimers?" ?.

Solid , helpful information . An article to share with my Caregivers.

All so very, very true. If you are new to this site or new to dealing with someone with dementia, keep these all in mind. #6 & 8 are especially important.