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Debunking the Hospice Myth
Gladys receives services from Hospice Advantage twice a week. When I mention this to friends or in casual conversation with acquaintances, they get sad looks on their faces, assuming Gladys is on her death bed.
I used to think that hospice was a place where people went to die. I met a hospice representative, Cara, at a health fair and we struck up a conversation. She explained that they also provide services for dementia patients and told me to call them when I thought I might need their services. She would send someone out to evaluate Gladys to see if she qualified for hospice care.
A month or so after that conversation, we were notified by Gladys’ day care that they could no longer accommodate her because she was beginning to require too much individual attention and care. I called Cara, she sent someone to evaluate Gladys and we began using their services.
Unless you live with and take care of someone with limited physical capabilities, it may be difficult to understand how much it means for someone else to bathe, groom and dress your family member, even for just a few days a week. The nurse coming by on a regular basis also cuts down on doctor visits, not to mention the “event” of getting Gladys out of the house and into a car.
The following quote is from the Hospice Advantage August 2010 Newsletter
Myth: Hospice is a place
Reality: Hospice is a service
Another myth about hospice is that hospice is a place. The reality is that hospice is actually a service and can be provided in several different places. Hospice services can be provided in a nursing facility, an assisted living facility, a hospital, an inpatient hospice unit, or a patient’s home. In fact over 68% of hospice care is delivered to patients in their own home, where they want to be. Services are provided by an interdisciplinary team consisting of nurses, nurse aids, doctors, social workers, chaplains, and volunteers. There are also many different hospice companies that, for the most part, offer the same kind of services.
Twice a week a nurse comes by to check:
- her vital signs
- her weight
- that she is still eating
- pain/comfort level
- general mental and physical deterioration
Twice a week a home health aid comes by to:
- bathe and dress Gladys
- comb her hair
- change her bed
- bring supplies
The home health aid also:
- gave me instruction on helping Gladys stand, sit and walk
- showed me how to change her while she is in the bed
They also provide:
- adult diapers
- disposable bed pads
- wipes
- dry skin cream
- perineal wash
Equipment provided so far:
- hospital bed and table
- hoya lift
- oxygen
These services are not free but they are covered by medicare. We have the option of using the home health aid three days a week but we don’t. Other services available include a social worker, respite care, volunteer sitters (available for a few hours) and a chaplain. We don’t use the chaplain service – I work in ministry so this isn’t a service I require. We also haven’t used the volunteer sitters yet.
If you are the primary caregiver for someone who lives with you, these services will give you a little relief both physically and financially.
Dementia, the Sneaky Thief
Dementia is mental disorder that causes memory loss, a decline in intellectual and language skills, difficulties with motor skills and judgement. It can be caused by a variety of diseases or conditions. In Gladys’ case, her dementia was the result of a massive stroke, heart attack and seizures that occurred in a very short time span.
Gladys has lived with us now for two years, over which my family and I have witnessed her steady decline. At first her symptoms declined gradually but in the past four months it has been difficult to keep up with her mental and physical changes.
Why I Call Dementia a Sneaky Thief
I started calling dementia a sneaky thief about six months ago when Gladys could no longer go the the bathroom without assistance. It was as though someone snuck into her room and stole a life skill that so many of us take for granted: pull down pants, sit on commode, use toilet, stand up, pull up pants. A simple life skill that disappeared like a thief in the night.
At that time, Gladys still remembered to go to the bathroom but she would sit on the commode with her pants still up. She had no idea that she had not performed the necessary task of pulling her pants down. Dementia stole her ability to reason.
Right now dementia is just waiting to snatch away a few more of Gladys’ life skills that are teetering on the cusp of disability:
- swallowing medicine
- standing and walking
- feeding herself
- use of her left arm and leg
A thief is someone who steals something from someone else with the intent of keeping it (or selling it). Over time, dementia steals so many of our life skills. Simple things that we take for granted – things we do without thinking.
These are just a few of the things that my family deals with. If you are a caregiver, what has the sneaky thief stolen from your loved one?
Note: Image of the brain from http://faculty.washington.edu
Marietta Health And Rehab – My Opinion
Marietta Health and Rehab is one of three nursing homes that our hospice agency uses for respite care. The way the process works is that the agency checks to see which facility has availability for the dates requested. In our case, that was Marietta Health and Rehab. We used their services for them to care for Gladys for three days and two nights. This post is my opinion of the services we received over those 2-1/2 days.
Friendliness
The administrative staff, nurses and other staff all seemed pleasant and friendly. There was a lot of paperwork to read and sign for those three days but the facility administrator constantly apologized and assured me that it was only a few more minutes. Even though Gladys’ stay was going to be short, we were introduced to a bevy of staff people who would assist in Gladys’ care. Each one was very personable.
The Facility
The facility is a very old. The closets in the rooms have deep, heavy, wooden drawers, the bedding is dark; overall it is fairly depressing. However, on the positive side, upon entering the facility there is an aviary with colorful birds. There is also an aquarium. The facility is secure – a code opens and closes the door from the outside and inside. The cafeteria is bright with one side of windows.
Programs
The facility has scheduled activities, including religious services on Saturdays and Sundays.
Communication
I don’t know about other patients, but in our case communication was definitely lacking. Some of the problems we experienced were:
- When I got to the nurses’ station when we went to pick Gladys up on Sunday, the nurse in charge thought I was taking her home for the weekend. When I said, “no she’s only here for respite” the nurse look baffled. One of the other nurses had to explain respite to her. That was scary.
- Gladys’ discharge papers were not ready. The staff said they thought she was going to be there for five days. Every paper I filled out during admission said three days and that I would pick her up on Sunday between 1:00 PM and 2:00 PM. I got there at 3:00, so she should have been ready.
- I had signed an order that said “family will do laundry.” This was to make sure that her clothes stayed in her room. While I was packing Gladys’ clothes, a person came by with one of Gladys’ shirts and a pair of pants on a hanger; she didn’t know whose clothes they were (even though Gladys name was on every item we took to the facility, including her clothes).
- The most disturbing thing was that part of her medicines were missing. They actually had to find them. So my question was, “If you had to find the medicine, was it administered to her while she was here?” After checking the chart, it was discovered that she did not receive those medicines over the 3 days.
- Last but not least – I called the facility ahead of time to be sure of what to take for Gladys. They did not use her night gowns, undershirts or toiletries. I didn’t eve ask. By then it was a mute point and I just wanted to get her home.
Customer Service
Even after we had to wait for the staff to prepare her discharge papers; found someone wandering the hall with her clothes; and wait for Gladys to be dressed I was annoyed but managed to keep my cool. However, when they had to FIND her medicine and discovered that some of the medicines had not been administered, my temper rose but I managed to keep it under control. Even though I didn’t raise my voice and managed to not call them idiots, my responses were sharp and comments were biting.
One of the reasons my temper began to rise was because of the head nurse’s response. She kept telling me that this was not her wing so it wasn’t her fault; she was only trying to help out. I knew it wasn’t her fault, but I didn’t care and that was not the right thing to say. We went round and round about the medicine. Finally, I just shut up because I didn’t want to lose my temper. Quite frankly, I didn’t care whose fault it was, I just wanted it fixed.
I work in ministry and I can’t count the number of times that I have apologized for something that wasn’t my fault. It is so much more calming to say, “I’m sorry that this happened, let me see what I can do to help you. I apologize for your inconvenience.”
The Up Side
Since I opened my online store, Caregivers Health Mart, I joined a networking group that provides services for the elderly. Before taking Gladys to the facility I talked to some of the people I met through the network and was told that Gladys would be fine for a few days but they wouldn’t advise it for long term care.
I think this facility has potential but the staff needs training in customer service and organizational skills. It would benefit from a facelift.
This was our experience, what do you think?
