Date
February 13 2018
Written By
Barbara Karnes
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The Nursing Home Blues

The Nursing Home Blues


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Barbara Karnes - February 24 2018

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.
Barbara

Marcia Florkey - February 24 2018

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 - February 23 2018

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 - February 23 2018

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. 

Barbara Karnes - February 15 2018

Hi Terry, trying to figure out dementia and how to enhance someone’s quality of living is such a challenge. I guess because we don’t understand the reality a person is living in. Hard to please when there are no set directions. I think you are doing an amazing job of interacting with your mom. You are so observant in what pleases her and allows her to interact. Have you contacted the Alzheimer’s Association ALZ.org? They are a great source of support, guidance and knowledge.
My blessings are with you during this challenging time. Barbara

Ginny Robinson - February 15 2018

Great response, Barbara!!
Went through this with my Mom….she only had to be at a nursing home because of blindness! One thing I did was to visit her for 3-4 days almost every month (I lived 700 miles away from her), and take her to a hotel for the weekend so she could get out of the setting. Also, called her every evening! This helped a great deal in the adjustment. But, I know she told me many times she did not want to live and did not know why she was. I would explore all the reasons she was living with her….and, it would help immensely. It was probably only about the last month before she died that I was not able to convince her that she still had a lot to live for. At that visit, we discussed what happens with dying and funeral plans, etc. Thank you Barbara for guidance I received at one of your seminars, to help discuss death with her!!

Dwight L Dulsky - February 15 2018

Great advice!
As a hospice volunteer, I am in a lot of local nursing facilities in my area. I see a lot of variation in “life enrichment” activities Those coordinators, their enthusiasm and how they interact with residents can make a huge difference in the quality of nursing home life. Granted the ultimate choice of the resident to op in to these opportunities lies with them. It is difficult to find programming that fits all, but some of the best know the needs of the individual residents and try to meet that as best they can.

Terry Camper - February 15 2018

" If she has dementia that is a whole different approach. " My mother is in a nursing home, has dementia, was almost at death’s door, so Hospice came in, and now she has recovered, but is still bed bound. I have so many questions and concerns, and Hospice seems to think she is fine as she is, because she has dementia, she is just on the ‘waiting list’…so to speak. I don’t know what activities to offer her, since she cannot really do much; cannot read, cannot focus on anything. She watches tv and we chat about what is happening as I feed her. My caregiver that gives me a rest lets her feed herself, but I feed her when I am there…it is what we do. Mom always wanted to be pampered and she is getting it now, and her behavior is so good. However, when I am not there, she has nothing to occupy her time, and often pulls her covers off, tosses them to the floor, and will shred the pages from any magazines I leave for her (she does that when she is stressed or aggitated). So, I suppose I am asking for ideas of how to occupy the mind of a dementia patient, other than tv…?

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