How do you keep mentally well while caring for a parent with Alzheimer's?

13 answers | Last updated: Oct 26, 2016
A fellow caregiver asked...

What can you do when your parents have Alzheimer's, which is getting worse, and you can barely visit them without feeling sick afterwards? I know I need mental support but no therapist will listen to all I need to say. I feel like I can't deal with this anymore. I have to organize bank documents for my eldercare attorney and I am falling apart and feeling very depressed.


Expert Answers

Kenneth Robbins, M.D., is a senior medical editor of Caring.com. He is board certified in psychiatry and internal medicine, has a master's in public health from the University of Michigan, and is a clinical professor of psychiatry at the University of Wisconsin-Madison. His current clinical practice focuses primarily on geriatrics. He has written and contributed to many articles and is frequently invited to speak on psychiatric topics, such as psychiatry and the law, depression, anxiety, dementia, and suicide risk and prevention.

I am so sorry to hear that both your parents have Alzheimer's Disease. As you have experienced, grieving is an ongoing process through this illness, because the person with the illness slowly slips away. It is important to recognize, however, the illness does not have to be a miserable experience for the person who has it. As this disease progresses, it becomes increasingly difficult to remember the past or anticipate the future, so one must live in the moment. This can actually be a gift, as long as there are enjoyable and meaningful moments. It may give you some solace if your parents are able to remain comfortable, but you still need assistance with your grieving.

It sounds important for many reasons that you get help with the emotional toll this experience has taken on you. There are several places you could get such help. First, I would strongly recommend you participate in support groups for family members at your local Alzheimer's Association. This can help you get ideas about what has helped others going through similar experiences and give you a chance to talk about some of your own challenges. I can't tell from your note whether you have already met with a therapist, but I would also strongly recommend you get an evaluation from an experienced mental health professional at this time. When grieving reaches such an intensity that you are unable to manage your day to day activities, it is important to get such help. You could get assistance finding the right person from your primary care physician, friends or family you trust or you could ask for suggestions at the Alzheimer's Association. It may be you have a serious depression that would improve dramatically with proper treatment, and/or it may be you need help talking through the various issues weighing you down. A good mental health professional can help you either way and they will be very interested in what you have to say. If you already tried meeting with a mental health professional and did not find them helpful, I would suggest you get a good recommendation and try it one more time. Different mental health professionals can have very different skills and approaches.

There are a number of other things that can be very helpful at such times of great stress. These include regular exercise, a consistent sleep schedule, avoiding alcohol and other mood altering drugs, doing your best to follow your usual routine and keeping in touch with your social supports. If you have siblings, a significant other or other close relatives, they are likely struggling as well and this is a time to try to reach out and do your best to support each other. If you participate in an organized religion, this is a time where clergy can provide you comfort. It is also a good idea to try to spend some time each day with activities you would usually enjoy. During this difficult time, you may not be able to enjoy them to the same extent you have in the past, but hopefully they can still provide you some relief.


Community Answers

A fellow caregiver answered...

Thanks for such a kind, supportive response.


Jenc answered...

Feel free to email me. jec3482@yahoo.com - I care for my mother and father in law who have alzheimer's. I've tried several therapist including church and support groups. I don't feel that others have the time (or their time cost too much)to listen to eveything and I personaly feel the need to give a complete and accurate account of what's going on so that I can get the best advice. I have yet to be able to do that, but have been finding ways to work through things regardless. The frustration is relieved when my concerns are recognized and yes it is undoubtedly hard to do what we are doing. I have plenty of time to listen and would be happy to give a phone no. or call after email. Jen


Judithmft answered...

As a therapist myself, I would also encourage you to try therapy again. The personal fit between the therapist and client is essential for it to be helpful, and perhaps in the past it was the wrong person/time/place/approach for you. Also, as I therapist I would want to know what my new client needed, and to know they need someone "to listen to all they need to say" would help me do a better job. Don't give up - help is out there.


Brighter answered...

I would suggest that you try writing your thoughts (you can destroy later as you wish). Writing can bring clarity to issues - just like talking aloud. Also, be sure to remind yourself of the things for which you are thankful so that you can give yourself some balance in this process. Even if you only create a "grateful" list daily, after awhile it will help replenish some of the energy expended in caretaking, grieving and accompanying worries. It's possible that your parents are happier now than you are and they wouldn't want you to be so stressed.

I agree that getting into an appropriate support group and/or a new therapist will benefit you greatly. We all need help at times, it's in our nature. I say to myself when confronting difficult caretaking issues, "I choose peace" and after months of saying it, hoping for it, then believing it - it finally worked! Remember too, that you're not really alone as there IS a lot of support out there for you and you will connect to it.


Fiona answered...

I read that having Alzheimers is the closest we can come to achieving "zen"...there is no past, there is no future. As long as the person with the disease is not in pain in any way, they will be happy in the "right now", and that's all they have anymore. My Mom was always a discontent complainer, rarely pleasant to be around. But now she is mellow and child-like. She has balance issues and fell recently in the middle of the night(for which she is now receiving therapy), and by the following morning she didn't even remember the fall or the emergency room visit.
Unfortunately for those of us who love the person, there is no more opportunity for the kind of "closure" that many of us seek before we pass on. There is no way to discuss the past with Mom...she simple has no idea what I'm talking about. I think my brother, who rarely visits her, is going to have some difficulty with this in years to come. But having lost our Dad to colon cancer, I can say with certainty that the grieving for losing a loved one quicker like that is infinitely less painful than losing Mom by inches like this. Three years after her diagnosis (who knows how long she had been "sliding"? She hadn't seen any doctor in over 30 years!) Mom has no idea who I am other than the nice lady who brings her candy. She can only sit and listen to me chat one-sidedly for a short time before she gets bored and walks out of the room murmuring that she has "things to do". Then she goes to sit in the common area with her fellow residents. The first time she "dismissed" me, I was hurt. Now I realize that the frequency of my visits helps keep my face in her mind, so I have to be content with that. She has reverted to being like a toddler in many ways. I will take care of her until she doesn't need me anymore, because even if she doesn't remember it, she is still my Mom and I love her. And the grieving goes on.


Jan52 answered...

One day recently I visited my dad, and he kept pulling all his covers off, revealing much more than I would ever want to see, so I had to leave.

My last visit, the first words he said to me were "I am 90% dead" and this was during a very rare lucid moment, because what he said is very close to the truth as he is at the end of his PD and Alzheimer's.

It is extremely hard to spend any more than maybe 15 minutes with him because I am so afraid he will say things to frighten or upset me greatly. His conception of time is so off anyway, and he spends most of his time asleep and I would not want to wake him up if he's asleep during my next visit.

This is the hardest part of my life to go through. I suppose at one point he will be calmer and comfortable because of hospice, but he seems to be miserably unhappy, uncomfortable and since he can't move at all by himself, I can only imagine just how frustrated and angry he must be.


Fiona answered...

Jan, as you point out, he is frustrated and angry...he needs you to be there for him. No matter what he says, you have to try to force yourself to be there. If it helps, think of it as the disease talking, not him. Guilt is a terrible burden, and it will be worse for you after he is gone, if you don't give him a "safety-valve" to vent to now. Many times I come home and log on here immediately, to vent myself, because I can only take so much. Sometimes I cry while I write. But we are all here for the same reason...we all empathize, because though none of us wants to be, we are all in the same boat. Be strong!


Jan52 answered...

I have no guilt now, nor will I ever have any. I can only do so much and I can only visit him once a week. My doctor is in total agreement with me and always tells me to take care of myself first, which is what I am doing. Any more than once a week, and I will be good for nothing. I am using all the strength I have and this is the most I can do. My friends are also in agreement with me. What is appropriate for you is NOT appropriate for me, nor will it ever be.


Caregiving wife answered...

Jen, Fiona, Jan... and everyone else... My heart and prayers go to you. I am caring for my husband with Alz, and it's probably the hardest thing I will ever do. But it's very rewarding, knowing that I can give him as much love and peace as is possible.

There are mornings I sob myself out in the shower, then put my happy-strong-calm face back on and continue with life as it is now. When it's a spouse, it hits home even harder than with a parent. We've lost his income the last dozen years he would've been working, I'm watching my partner disappear from me a day at a time, the romantic parts of our relationship will never be the same again... it affects every moment of every day.

But knowing I'm not in this alone helps. I see the pain and confusion and fear in these letters, and know that there are others out there who "get it." My friends and family love me and support me, but they just don't understand how all-consuming and difficult this is for my life. You folks, on the other hand, DO understand, and that really helps. There's always someone here who has it better in one aspect, but worse in another. It helps me keep my own situation in perspective.

We have to keep finding the good in our situations. Maybe it's knowing we can help a loved one through a scary time. It's hard on us, but we're put here on earth to be there for others, and this is that time. I've had people tell me I'm a saint. Hah! I just have learned that I'm no good to anyone, including myself, if I let this beat me. Either we find strength and courage, or we crawl under the blankets and die. It's a choice; one that easier said than done, but not impossible. Some days it's a matter of making myself put one foot in front of the other, then doing it again, and doing it again. The more I do that, the better I become at it. If you'd told me 5 years ago I would be able to do this, I wouldn't have believed you... but here I am.

So I recommend turning to this group as often as needed. Just being able to write down my thoughts and knowing someone else out there will think, "Oh yeah, I know EXACTLY what she means"... that means a lot. Thank you to all of you :) God bless you.


Msdot answered...

I spend most of my time caring for my disabled Mom. She went through a deep depression after my brother had a instant heart attack right in front of her. She's now dealing with Dementia/Alhemizhers. She also has suffered many mini-strokes during this time that followed over the last two years. To watch her capabilities decline daily sometimes was more than I thought I could bare, but God is good. The way I kept stable mentally, physically & spiritually I would often think about the woman (Mom) who has taken care of me my whole life, taken care of my children, my siblings children and now I have to be there for her, she needs me now. I would begin to think thoughts such as-here's this woman, my hero who had been so funny, articulate, wise, outgoing, stable and strong in the face of adversity, took care of 8 children with no father, my rock, my anchor, my best friend, the one that introduced me to Jesus the first love of my life, my angel on earth, as I used to call her-who has evolved into now a stranger, someone I hardly know. Believe me I truly miss the model of my mother and lamented her loss every day. I must say during this time through all the pain and disappointment of losing the person I originally knew as my Mom has emerged a new understanding of who she really is and that my love for her became much stronger than ever before--this is what keep me mentally sane. I now realized that my love for my mother is not about her outward appearance and capabilities it came from witnessing her inner strength and just seeing the love that come from her eyes to many. These things make me a stronger caregiver, thank God for His strength in my time of need. Becoming her caregiver has become a privilege and honor, just to help hold one who has selflessly done the same for me and to usher her on to her new beginning is my reward. Through all of this caregiving has taught me that where there is love, one feels no sacrifice. Where there is love, things become effortless. There is no guilt nor remorse. There is only the joy of giving care to the one you love, to that person in need . I believe caregiving is one of the highest forms of love one can give, and thank God I am blessed enough to have become hers, I truly feel blessed indeed. The biggest blessing inlife comes from helping someone else, thank God if you're able.


Judy garwood answered...

I understand. In 1993 I moved back home to New Orleans to take care of my Mom who had Alzheimer's and my Dad who had severe dementia. I kept them at home as that was what my Mom wanted. I finally just wrote a book about my experiences titled "Mama, I'm Here." You can find it at the Bookstore at FriesenPress.com and everywhere else in about 2-3 weeks. The things that got me through were memories and talking them out to my Mom, who didn't know who I was. Finding a moment to laugh at something every day. We all watched the comedy channel on TV together. I put great thought into cooking really tasty things. At Thanksgiving my Mom, who, on that day, had a moment of clarity said "This is delicious!" It made my day. Every now and then Alzheimer's patients have that moment of clarity and know exactly what is happening. Be there and recognize that one moment when their eyes are clear and they say something familiar. It took me years to get over the depression after Mom died but then one day I realized this was not what my Mom would want for me. If you want to talk to me I'm at judygarwood@rocketmail.com.


A fellow caregiver answered...

Maybe it could help to keep some kind of record of the frustrations and let yourself have a stress-buster after it reaches a prescribed point whether you think you need it or not. For example, you could move pencils from one pencil cup to another and when they are all moved, you take a ten minute walk (or any number of things). Swinging and rocking can be almost as therapeutic as a massage because of their effect on the inner ear. And they're free! Good luck.