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Caregiver Stress and Guilt : My Mom Hates being at a Nursing Home

by Tony
(Toronto)

My mom has been diagnosed with Alzheimer's about 3 years ago.

She was living in a basement apartment of our bungalow for 9 years.

Over the years, we have hired increasing levels of care giving, starting with having someone with her 3 days a week, 8 hours a day. Later we advanced to securing care for her 24 hours a day, 7 days a week in the home. We had this help in the last 5 months before she was accepted by a long term care facility.

After a few falls, when I realized that she needed 24/7 care,I struggled with the idea of putting her in a long term care facility.

Dreading the thought, I began to realized that providing 24/7 care in her apartment was not going to be sustainable.

My mom was admitted to the nursing home Jan 28, 2011.

At first, she seemed to be adjusting well.

Between, myself, wife and brother, she is visited at least once a day.

Being at the nursing home, she seem to have way more lucid moments than she did at her apartment.

Perhaps this was due to the interaction with people or a change in her diabetes medication.

She is now on insulin. Before, her doctor had her on four different meds for diabetes.

My mom generally appears healthier, though she complains about feeling as if the wheel chair is rocking.

A CTR appointment is in progress. Lately, she has been saying she hates it at the home. She feels that she is not treated well. She feels as if she has to wait long to be tended to (she was used to one on one help at home 24/7).

The last couple weeks she has broken down in tears begging to please take her home.

I have been a basket case recently, crying at the nursing home, in public, and at work. My wife is getting upset because she cannot handle seeing me like this. I only talk about how sad I am for my mom, repeatedly saying to mu wife, that this is exactly why I did not want my mom in a nursing home... I feel miserable, angry and very sad. Help please!

Thanks!

Tony

Dear Tony,

First let me tell you that you are not alone. As a family caregiver, we feel a tremendous amount of responsibility for the happiness of the person we are providing care.

So, it is not unusual that our "caring" can actually get in the way of making the right decisions.

Let me explain. You and your wife have done everything you could to provide the best possible care at home for your mother.

In your message to me, you tell me that you came to realize that is was not going to be sustainable over the long term.

I am an advocate of aging in the home. Saying that, I am not an advocate of a family member remaining in the home, at the expense of another family member's health and well being.

If having your mother at home will affect your marriage, your relationship with your children, your own health or be detrimental to your finances or job/career, then placing her in a nursing home was absolutely the best possible decision for everyone involved.

Most care givers do not realize that it requires 24 hours a day, 7 days a week. Individuals with the diagnosis of Alzheimer's can live 7 to 20 years after receiving the diagnosis.

Statistics show that 50% of spousal care givers of individuals with dementia actually die before the person with dementia. Care giver stress is very serious and does kill.

Here are a few tips to overcoming Care Giver Guilt

Now, I want to address the feelings your mother is expressing. This is not uncommon. There comes a time when even is she was in her own home, it would no longer seem like home to her.

What your mother needs more than anything right now is routine and consistency. I would discuss with the facility about regular staff providing care for your mother for continuity.

Your mother may never be happy in the nursing home. You have to be content knowing she is in the best place for her condition. You are her advocate. That is a very important role.

Please let me know how things are going.

Diane

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