The Nursing Home Blues

Dear Barbara, My mom’s health is actually fairly good, her heart is strong and blood pressure is good. But she has been wanting to die for some time. We removed her from her home in July and the nursing home is not where she wants to be. She could no longer successfully maneuver and we feared for a fall. How do we handle someone who wants desperately to die but the end doesn’t seem to be in sight? Would appreciate any input....she is withdrawing and doesn’t participate in anything.

Your mom’s will to live is affected by the quality of her life. Her quality is diminishing, as is her independence (She had to move out of her home). Maybe the nursing home was the last straw. We need a purpose in life. Living with aging, living with physical challenges, and being in a nursing home all make it hard to find a purpose. What appears to me to be happening is your mother is unhappy with where her life is and she is voicing her unhappiness by saying she wants to die. Is saying “I want to die” the same as saying “I have no reason to live?” Perhaps.

Explore with her ways to adapt to the nursing home and her life as it is now. Introduce her to other nursing home residents. Maybe she is hesitant to reach out. Does she partake in any of the nursing home activities? Go with her a few times to help her break the ice. How often do you take her out to eat, to your home to visit, or to a movie? How can you help her find enjoyment in where life has brought her?

All of this said, all you can do is offer. If she refuses to venture out and become interactive then this is how she chooses to live her life: by wishing it was over. I would also have a talk with her. Tell her your concerns and ask how you can help her live a better life. Tell her you hear her unhappiness, and appreciate her difficulties. Ask her how the two of you can make things better.

As we get older, life presents us with different challenges. We adapt to them in the same way we have lived our life and dealt with all the challenges in our life up to this point---only our reactions become intensified. If we were withdrawn and not very social in our earlier living then as we get older we become more withdrawn, even less social. Think about how your mother dealt with unpleasant situations in her earlier living and magnify those reactions now.

You didn't mention dementia so my suggestions are based on clear mental awareness. If she has dementia that is a whole different approach. You might also check with her physician to see if an antidepressant is appropriate. She had a major life adjustment when she had to move out of her home. She may be severely depressed. I know I would be.

Something More About Nursing Home Blues...

My blog posts are initiated by the questions I am asked on my website. I also get questions on my FaceBook page, End of Life Care and Bereavement. Do you have a question about a loved one approaching end of life? Ask me!


Jane Robert

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BK Books replied:

Barbara Karnes

Oh Marcia, you face a life situation that so many are now living—do I sacrifice myself in caring for my parent. The thoughts we have are “they sacrificed for me” “now it is my turn” and as the care becomes more difficult and goes on and on, often for years we begin thinking “I just want this over with” “I want to get on with my life” then OH THE GUILT. My thoughts (and I have been in these shoes with my mother-in-law and my mother) are that we take care of our own, when we can, for as long as we can. The operative words here are “as long as we can”. When the caregiver role becomes a bigger burden than our health and peace of mind can bear then we look elsewhere for help and support. A nursing facility is often the reasonable answer. When that occurs our responsibility, our care, is not eliminated. It has just changed. We are still caregivers for our loved one. The physical responsibility has just shifted. We still visit, plan special outings (when feasible), bring special food, surprises. Our loved one is no longer in our home but not forgotten. You are doing all that I mentioned above. You are taking care of yourself so that you can take care of your mom. That care is just in a different way now that she is not under your roof.
Thank you for sharing. Please contact me again if I can be of help and support as you travel this challenging life road.

Marcia Florkey

Dear Barbara,

I resonate so strongly with the woman who asked this question, my mother, 93 years old, is in much the same situation and while her heart and BP are fairly good, she does have COPD, and dementia, but in many ways it is mild, she is not combative but it has affected her physical ability to move around safely, ability to do daily activities, her memory and emotions.

Mom lived with my husband and me for almost four years (just until December of last year) after she was diagnosed with dementia and I took early retirement and hired a nurse aide to come in a few days a week to care for her bath, etc., which was very helpful. But whenever she became sick that I couldn’t handle, she ended up in the ER, which meant hospitalization, then 4-6 weeks of rehab in a nursing home and then in home nursing and rehab for another 4-6 weeks after that. It was bearable and I know it was better than a nursing home and she would always bounce back, diminished, but at least no longer ill.

However, it became apparent after a prolonged illness with pneumonia, UTI and a diagnosis of low platelets in November of last year that her illnesses were coming more frequently and truly more than I felt I could handle (and my own health was being compromised as well). She is in a very nice, smaller, non-profit, faith-based nursing facility that really has been very good to her. I visit 3-4 times a week and bring her special things (flowers and chocolates are her favorites) but she always tears up and says how much she misses me, etc. I know it is the dementia partly, but how do I as her primary caregiver/advocate/daughter reconcile the guilt? I am beginning to think that after a few months I can become healthy again and maybe I should have her come back to our home? But it is a 24 hour job and if she returns, it is as if I am no longer her daughter, but her caregiver when she returns.

I am not sure I am looking for answers here, just thoughts on how to cope with this stage of her life, that seems to be taking so much of my life as well.

Thanks so much for all you do, Gone From My Sight was an absolute blessing when my father passed away under hospice care 15 years ago, he was retired from the Navy and the analogy was helpful to our whole family, we read it at his funeral.

Barbara Karnes

Hi Terry, You are so right about the challenges of finding appropriate care for many of our "not so incapacitated "citizens (because you are living it). Think I’ll put our whole exchange in its own blog. Maybe Nursing Home Blues -2. Blessings! Barbara

terry camper

Nursing Home Blues touched a nerve, so I reached out to you.  This is an area that is in such need of review and transparency…having been exposed to almost every type of living arrangement for my mother, from Assisted Living, to locked Memory Care, living at home with caretakers, and then a series of what is termed ‘health and rehab’ facilities, I have found there is such a disparity between what is advertised, and what is real.  And finding a ‘nursing home’ that consistently cares is impossible, I have decided.  I used the spend down method of getting my mom into Medicaid coverage, but we were careful about visiting and asking questions all along the way.  Even the best proved to be less than supportive toward dementia patients, and seemed to have a profile that all were expected to fit into, otherwise they were labelled ‘combative’ and proved difficult, if not impossible, to place.  Someone who was not wheelchair or bed-bound, as my mother was not, was deemed to be ‘too much trouble’ because of the need for more contact and interaction. 
I understand burn out, and having bad days, but kindness and caring are in low esteem by facilities, especially when watching the bottom line.  Fortunately, I suppose, my mother is now bed-bound and we were able to get Hospice to help out, so she now fits the bill for a ‘model patient’… but it still seems one nurse can wreck her entire day with a bad attitude at changing time or bath time.  And family (which is me) must try to piece back together a mindset that keeps her contented and unafraid. this is a sad time of life.  And I do have the Nursing Home Blues, quite regularly. 

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