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August 27, 2014 / 1 Elul, 5774
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When What You Can Do Changes (Part VI)

                           
The Nursing Home Alternative- Choosing A Facility


It is our fantasy, our illusion, our wishful thinking (supported by the movie industry and our own values) that as we age or become ill, we will be cared for by our ever-smiling and patient spouses and children, surrounded by our loving, laughing, cherubic grandchildren whose sole wish is to hug and kiss us and listen to our stories. Reality for well spouses (who are often caring for aging parents while raising their children alone because they have lost the support of their ill spouses who need their care 24/7) is very different. 


Though originally they may have been determined to have the fantasy, after years of dealing with sickness, a well spouse finds himself living in a house, which no longer seems like a home but looks and smells like a hospital. Instead of smiling faces, the house is filled with pain and complaints, hard work and loneliness and an abundance of chronic sadness. The well spouse fights with thoughts of suicide, depression, and anger. His life bares no resemblance to the one of the devoted caregiver on the movie screen. 


When he can no longer cope with care giving because of his own advancing age or illness, the well spouse may finally resort to looking into nursing home placement. It is a decision dreaded by everyone, not wanted by the ill spouse or the caregiver. But, often, there is no alternative.
Care facilities often have very different ways of dealing with their residents. It is very important to try and match the facility with the needs and personality your spouse. The better the fit, the easier the adjustment will be. Communication is vital. The facility needs to be told and reminded of what your spouse can do for himself and then they need to detail how they intend to value and encourage that ability.


The larger the facility, the less flexibility it will have in meeting individual needs.  A mentally sound but severely physically disabled person will not be able to lead as active a life in a larger facility as a small one. He may be placed on a ward based on his physical inabilities and not his mental aptitude. As a result, he may have no one on his ward with whom he can converse.


If he is used to his independence once his basic needs have been met, and still makes appointments with people outside of the facility or even keeps a job, a large facility will probably not be in his best interest. They will not be able to adjust to his routine but expect him to adjust to their timetable for bathing, dressing etc. Conversely, someone whose mind is failing may find the inflexibility of routine in a larger facility a comfort that gives him a feeling of security and control.


The activities offered in the facility need to support the positive aspects of the resident. Physiotherapy on a volunteer, unsupervised basis is not a fit for someone who needs consistent exercise and or stretching in order to keep muscles from atrophying. That person needs a facility with a resident therapist who monitors his progress. Are the other activities offered mentally challenging enough for someone who can perform cognitively?  Does the facility have things like a computer lab, library, social clubs or interest workshops if applicable, so a person can pursue his individual interests?


Is there a desire to cater to your spouses needs or are you expected to cater to the needs of the facility? Some facilities have a smaller permanent resident component within a larger rehab facility. These types of facilities will often have a bigger push toward physical and mental independence than those that are “warehousing” our loved ones. Interview and spend time in the facility you are considering. Drop in unannounced. Speak to family members of the other residents. What do they like and dislike about the care? A good fit makes an easier adjustment for you both.


Can you afford a private or two-bed room?  Treatment of your loved one will often depend on the type of room he is in. It is easier for the facility to be flexible about bed times, noise, and even very young visitors if there are no or fewer roommates to disturb.


Meet with your spouse’s caregivers often and remind them of your partner’s strengths − especially after placement. It is often a perception shift when caregivers in a residence have mentally competent people in their care. They sometimes need to be reminded that their clients need to be heard and know what they are talking about. Whatever the strength of your loved one, it needs to be highlighted and capitalized on.


Never forget the power of kindness and courtesy. A box of doughnuts left at the nurse’s station and a thank you card may go a lot farther than constant criticism and snide comments. It is important to remember that you will be leaving at the end of your visit, but your partner will be living there and he or she will deal with any fallout from how you treat the staff − positively, or negatively.


You can contact me at annnovick@hotmail.com.

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More Articles from Ann Novick

When one is blind one learns to use Braille to read. When one cannot walk, a wheelchair gives mobility. Sign language allows a mute person to speak and ocular implants assist in hearing when one is deaf. These are all compensatory strategies that help a person function despite his disability. But compensatory strategies are not just for physical problems. Understanding our psychological weaknesses and setting up our lives to ensure that we are not tempted to repeat our past mistakes, is as necessary as any aid to the disabled.

Well spouses have often discovered that their friends and relatives, despite their closeness to the situation, often don’t realize the tremendous emotional impact living with chronic illness has on the family. With the best intentions, suggestions, ideas and criticism are offered, based on the non-experience of those with healthy families. Even when the good intentioned get a taste of the difficulties, it is sometimes not enough for them to then identify and understand what the family of the chronically ill must face on a constant basis.

Over the past two weeks I have shared letters from a therapist and a well spouse. Both of the letters gave personal insights into the process of losing hope, how we react when that happens and some ways of coping when test scores, diagnosis and just simple repetitive behavior indicate that change for the better is impossible.

Dear Ann,

I’ve read your last few articles on psycho-neurological testing (Oct.8-22) with interest. As a therapist who has counseled couples dealing with chronic illness, I’d like to give you another perspective.

Dear Ann,

Your articles on the Neuro-Psychological Testing were right on (October 8-22). My husband underwent testing twice and your articles explained it things exactly the way they were. Besides the test, we also tried therapy.

Very often when we can’t face our big hurts or big loses we focus on the little ones. We can discuss those. We can cry over the small loses, be angry at the smaller hurts even though it may look trite and sound ridiculous to others.

Over the last two weeks we have been discussing one way in which well spouses can determine whether behavior displayed by their ill partners is caused by their illness or is a way they have chosen to act. We have focused on Psycho-Neurological testing, what it can tell us, as well as its pros and cons.

Last week I discussed a question that haunts many well spouses: not knowing if the difficult and often inappropriate behavior frequently displayed by their partners are caused by the disease and therefore not-controllable, or if the behavior is a choice the spouse makes and can therefore be changed. This doubt can be the source of much frustration and many marital disagreements. One way of alleviating this doubt is by having a psycho- neurological work up done. But that path is not so simple.

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