Dementia Caregiving Is Too Much

What to Do When Severe Dementia Caregiving Is Too Much

Watching a loved one with end-stage dementia is a unique kind of spiritual and emotional drain. Loss and hopelessness can feel overwhelming. Indeed, some caregivers even consider suicide when the meaninglessness of the present seems to blot out past and future.

If you've had pervasive dark thoughts, please do this:

  • Realize that sharing your feelings is a critical first step to showing your own self the same loving kindness you've shown the person with dementia.

  • Confide your sadness to a member of the clergy, a trained counselor, or a nonjudgmental friend. His or her perspective can help shift your current perceptions, which, while real, don't reflect your entire life story.

  • Don't delay. Dementia care tends to narrow one's world and therefore distort it. Even when you feel very alone, there's a world of interested others out there who can help bring you back into the light you deserve.


4 months ago, said...

What a Blessing you are Barbara and how sad the daughter has done that to her Mom :( I take care of my Mom in my home and one thing we did was her medical Dr. had Home health care come in and depending on her needs they send different people that can help such as physical therapy and social worker and the social worker may be able to help you with your situation!! Insurance covers Home Health but you may want to check first! God Bless you!


4 months ago, said...

I've recently moved in with an elderly lady, I was friends with her daughter in our younger years, Well to just come out and say it, Her daughter stole money, car and wrecked it, now her bank is in negative almost 1100 I'm trying to do all I can to help and don't regret one bit, Need some advice on getting help or finding out how I can possibly go through DSS to get paid to take care of her due to she doesn't need to be alone ...She is 89 .....Help me with suggestions if you can


about 2 years ago, said...

By being more realistic. NO ONE wants to hear this kind of thing let alone be burdened by it--it is an easy way to lose friends. And I, for one, do not have the availability of "trained" counselors. I even had one member of the clergy tell me that he wasn't any good at counseling in this type of situation. I have found you have to dig your own self out of this hole, if it is going to happen at all.


over 2 years ago, said...

I understand the emotional toll this takes... I am fortunate that Mom is happy... she is full care for everything. It's extremely challenging but I see in her very expressive eyes that she has no cares and is always happy. At times I get emotional and see that Mother's concern in her eyes. I talk to her as I always did. "Yes Mom, I'm crying, It's alright though, this is part of life, we all have emotions and it's best to express them than to hold them in." She seems assured by this... I also ask her if she is fed up with this and though I get no response, when I ask if she's alright she nods yes.... I am at ease. A conversation with Dad before he passed away when having to clean him up. He cried and said I should not have to be doing this, my response was, did you clean me up as a child, he responded yes, well then I'm happy to do it for you now and I'm a pleased to give back just a tiny bit of what Mom and he did for me. My sacrifice to the is for the sacrifice they made to give me such a wonderful life. As always, Hugs, Prayers and Courage to continue our journeys.... Roger...


over 3 years ago, said...

I completely agree with the above article. It is critical to seek professional help, and I would suggest professional help over confiding in family members and or friends. It has been my experience that extended family and some friends will distance themselves from the situation, for many reasons, some because they feel guilty for not being there for you and or your loved one, and some because they simply do not have the ability to face the disease. I always find that it is interesting that the ones that offer the least in support for the caregiver are usually the ones that are the first to offer their opinions of which they know nothing about. I have personally been caring for my Mother with Alzheimer's Dementia for over five years. It is the most difficult challenge that I have ever been through in my fifty-seven years of life, I have been blessed by having a very supportive husband of 33 years, who has stood by my side through this entire experience, and it is not easy, in fact, it is really difficult and emotionally and physically exhausting. In the beginning I was so overwhelmed with feelings of resentment towards other family members, i.e. siblings, aunts, and uncles, etc. those that made promises of support, but in reality they were broken promises, the eventually go on with their lives, and the primary caregiver and or point person in charge of making the decisions for a love one is really left abandoned at the worst possible time and circumstances. I was devastated by the actions of people that I truly believed were going to be here for us, this was not the case, and it was extremely hurtful. Thankfully I went to therapy, in fact I was able to obtain therapist that was trained in geriatric psychology for the stress and stressors of caregiving. I went to this therapy for two and half years. Through this therapy I was able to understand the dynamic of the disease, the feelings, the emotions that were a part of my personal feelings of abandonment towards my extended family. The only way that I am able to continue to provide the care for my Mother was to completely detach from these feelings by letting go of the choices and actions of others, to not expect anything from them. I leaned to care for myself, to know that I am not the cause, that I am not the cure, and I am not in control of others actions, regardless of how hurtful their choices have been, it's is theirs to own, not mine. I have searched the dark night of my soul, as I would have never treated my loved ones in the fashion that I have personally experienced from certain family members. You learn much about the character of others when we face these types of life situations, and for the most part, you see a very ugly side of people, it's not a pretty picture! I agree that it is important to remember that this period of time in ones life is not the story of your life, it is a part of your life experience but it should not define you. This is very important to remember who you were before and more important place value on your life and keep your hopes and dreams alive knowing that you are giving and caring and showing the loving kindness that someone needs. Value yourself, treat yourself with loving kindness. Something that I have learned is that if you do not value yourself others will not either. Has it changed the way I view life? You had better believe it has, but it has also been an learning experience of my strengths, my capabilities to deal with very difficult life situations, and I have learned to value myself, as I never had before, there are lessons to be learned in living with this disease takes courage, commitment and love.


almost 4 years ago, said...

Dear Mike, it can be rare to read such loving words from a devoted husband caregiver. I believe that somewhere in your wife's heart & mind she knows what a wonderful husband she chose 43 years ago. I believe that there will be a day when God resurrects your wife to a beauty only you can remember, a mind clear and functioning. I hope you will have a day when she looks in your eyes and knowingly thanks you with kisses & hugs. You deserve it! I keep my Mom and also feel the joy and privilege of seeing her to death. May our heavenly Father keep blessing you with strength greater than you know you have. We have a loving Father, I don't believe it's his will that people get this way or that they leave us, we are victims born into sin. Jesus died to correct all that. Until then Mike keep your honest, realistic and humble way. Know there are others enduring the same and we are so proud to walk with you. I'm glad you have the love & support from family, let them help you. You are blessed, and your wife is very blessed with you!


almost 4 years ago, said...

As my wifes condition slowly progresses and we enter a New Year I believe we are unlikley to celebrate another Christmas togeather I feel sad and down. But I also have become aware of receiving great spiritual help in copeing with whatever chalanges my wifes failing health has thrown my way, I have been given an inner strenght I dident know I had,I have learnt that I loved my wife more than I was aware, that I found careing for her was not a chore but a joy, I know that she will leave me soon and nothing will change that , thats Gods will, I just thank the Lord that I was blessed to have spend 43 years with a women that I loved and I have been given a great inner strenght to care for her during her final months, it hard to put into words what I am experiancing but I am aware of receiving help , I believe that help is available to all just open your heart, I will miss my wife when she is gone I will be sad and tearful at times but also full of wonderful memories and thankful to my Maker for giving me a wonderful companion with which I shared my life. I do not allow darker thoughts to enter my mind, life will go on, , I will be happy, I love my children and grandchildren and will always have wonderful memories of a wife that the Good Lord Blessed me with.


over 4 years ago, said...

One additional suggestion: move. Action leads behavior. Walking, cleaning, doing laundry, anything to get your mind free of the depressing thoughts. Pray for help. Be grateful. Sometimes you can't reach anybody so you have to help yourself until the feelings pass.


almost 5 years ago, said...

thank you again youngest daughter - your words bring me comfort! I think you are spot on, I think she is trying to look as though she cares for her mother but using it as a guise to hit out at us! best regards to all of us doing this heart rending work!


almost 5 years ago, said...

Just sharing here is a great outlet. I read of others feelings, I understand & hope when they read mine maybe it helps. There are those who are the only one in their person of needs life. I think they have it the hardest because they devote everything they have as this person goes slowly and finally the caretaker is left with an empty definition life & purpose. The caretakers who have "opposition" from other family members at least have a reality anchor, they reassess through others ludicrousness. We have four who share in taking care of Mom, 2 daughters, a granddaughter & hirer help. We keep a simple notebook & share some things there. We help each other reason at times. I print off stuff from here & we discuss. I understand darkrainn98's views & hope her tour has ended. It's very ok to let go. Mam's aide, I get her too. There is no legal / moral balance. How could there be with motivations like greed & shame? Your s-i-l has shame and compensates with activities that makes her "look caring." Poor her if she gets the gene! Use the legal system to your benefit, ignore her as much as you can & drag it out. Remember, you are doing ~ she's just talking, you are not going to "win" in her world, or change her. You are right by your actions. Miss RitaB, bless your heart. I change hats you do doors, both helps with boundaries. I get living in the grayness, did you ever think this would be your life? You see people & they ask "What are you doing now?", "Taking care of my Mom." They can't relate, "Oh still? That's nice, how is she doing?", "Well just a smidgen less than yesterday, but better than tomorrow!" Daunting, she's not getting better. Stay with it ladies & gents, love them & love us. Accept our love back to your heart, big hug!


almost 5 years ago, said...

I try to do all the three things mentioned in the artcile, and it helps. The feeling is of a soft and grey sensation pervading everything, but sharing my situation with a few others and trying to give rewards also to myself helps a lot. I also try to "open and close doors" in my mind to appreciate the good moments.


about 5 years ago, said...

oh boy, do I understand how you feel!!! I've been looking after my m-i-l for 7 years now. I have come to the end of my rope too. Mom is in the late advanced stages and each morning I look to see if she has died in her sleep. It seems to me it would be so much kinder if she did as her life is little more than eating (with difficulty) and sleeping. That part isn't the worst for us . . .it's my husband's sister . . she is working hard to make our lives as difficult as possible. Taking mom to court, taking us to court, reporting us to the building department resulting in a violation and more court fees and more. The sad thing is that she tells lies and the lawyers believe her. She doesn't really care about visiting her mother - has been invited to do so many. many times but only 'drops in' for 20mins or so twice a year. then tells the lawyers and the court that we don't let her see her mother. and she refuses to have her mother in her home! I can't go on much longer, she is taking every opportunity to make our lives as difficult as possible, not looking after her mother or helping out in any way. she has frittered away over $100,000 of mom's money in court cases. Now there is none left. If mom knew what she was doing she would go apoplectic. There has to be something we can do to get her off our backs.


about 5 years ago, said...

Opening my feelings to a non-judgemental friend.


over 5 years ago, said...

Ppl who havent been there have no way of knowing what this disease does to the person and to the caregiver. Recently I've had to start feeding mother bc she isnt strong enough to do so herself. I've been changing her pullups for many months now, i guess im used to that. but when you sit & hand feed your mother, lemme tell you it is emotionally crushing!!! I was sitting there feeding her thinking "i cannot believe im doing this". I dont know what it is abt that, but when she was finsihed eating i wanted to go in bdrm get a gun & walk out on the deck & blow my damn brains out. That is an emotional hurt, i dont know quite how to explain. Spent last night in the ER w her bc when homehealth came to ck on her her blood pressure was 223/145.. they put her back on blood pressure meds. Im not having the suggested CT scan of her lungs (bc of the mass they found during an xray) because she simply wants to die, so i dont see the point. C'mon doc, she's been smoking since she was 9yrs old, im mental, but im not stupid, nor are you... is what id like to say. Noone understands.. they can tell you they do, those are ppls fav famous words, but they dont. They may understand due to the feelings they have taking care of loved ones, but in that moment, that one desperate moment noone understands but the person thinking it. All im here for is to make her stay as comfortable as possible when all is said & done. Dementia/Alzh is a very wicked cruel disease and thats all i can say. Thank you for listening.