Advice for caring for a family member
I am going to be volunteering at my local hospital. They are planning on putting me on the Geriatric floor. My role is to talk to the patients and family members. The patients are going to be people who are too sick for an assisted living facility, but their insurance has ran out and they can't be transferred to a hospital or nursing home.
I would like advice from people who have had to take care of relatives, particularly Alzhiemers. Do you know of any links or services that were helpful to you? Some of your services, since I live in the States, may not be available here. However, my problem is that I'm looking for resources...and I don't know where to look. Even if your programs are not available here, it may give me an idea of where to look for help.
Do you know of any cost effective tools used in elderly care (for instance, someone mentioned an alarm could be put on the door with dementia patients to warn relatives if they went out)? Was there anything that you felt that you hadn't been prepared for by your doctor or social worker that you would have liked to have known? What attitudes did you appreciate or not appreciate from healthcare workers or social workers?
The people I'm going to be dealing with are going to be vey upset. They will probably already have too much going on in their lives, and the patient is probably really too sick to be at home--but because of the financial situation, that is where they are going anyway. I would like to help them as much as possible, and I would like to know how to act. Sometimes you don't mean to offend people, but things come out wrong--and when people are upset and stressed out, they can take things badly that normally wouldn't offend them.
I realize I may be asking a question that isn't pleasant to dwell on--and this may not be the type of site where it should be placed--but I would really appreciate any help. I really want to do a good job.
I think when you look for resources will have better luck looking locally. Start with churches and they may be able to offer you other links. I believe the Alzheimer's Association is a national group.I would do a google search and see where that gets you for starts.
Something I have yet to learn well is sometimes the best intervention is SiLENce.You are already describing a situation where there is not much else to do but to listen to the losses of the family and patient involved.Full attention is priceless and more effective than you know. Most people are going to figure out the solutions most suitable to them on their own.Letting them sort them out with you would be doing a lot. Offer information so they can make good choices but try to stay neutral and ask questions that are open ended.
Yes, this is a difficult subject. I do not have any information about Alzheimer's disease and care. However, because I was involved in the care of my mother-in-law for the last twelve years of her life, hopefully I can be of some help.
From an emotional standpoint, it is very easy for healthcare workers and family members to forget about the dignity of the patient. My mother-in-law suffered a cerebral hemorrhage at the age of 67. She remained completely paralyzed and unable to communicate until the day she died. She had a condition called aphasia. She understood what was being said to her for the most part, but was unable to communicate her thoughts back to us. I'm explaining this only because it became so frustrating to see one speech therapist after another speak to her as if she were a five year old.
So from my experience, it is very important to treat these patients with respect and dignity and not like little children. While visiting my mother-in-law in several facilities over the years, I did come in contact with Alzheimer's and dementia patients regularly. It is best to refrain from constantly correcting them when they are not living in the present. If they think they are at home cooking dinner for their three young children, don't correct them by telling them that these children are now in their fifties. Instead, ask what they are cooking. I know it sounds strange, but it is more important to engage them in dialog and to make them feel special than to let them know they do not know what they are talking about.
You can also be very helpful to the families visiting. In most cases, these families are just completely overwhelmed with grief, fear, doubt, stress and exhaustion. If they have an advocate in their corner, believe me, this makes all the difference in the world. Even if you don't have all of the answers and resources, just by "listening" you are making a tremendous difference.
I wish you the best in this endeavor and hopefully others will be able to provide more advice.
I worked at a nursing home specifially for demented patients in Maine once. They had little quiet corners set up like a kitchen in the 1930's , a living room etc and there were pictures of Maine scenery painted in the fake windows on the wall.Each room had gadgets that were appropriate to the scene. I guess you could say they looked like movie sets. The patients would wander in and fix a meal for the kids or whatever they may have done in their past. I always liked that idea.
While I still welcome any other suggestions, I want to thank those that have answered so far. I realize that this may be taking you somewhere that isn't pleasant to think about. I also took care of a relative for many years until he died, and I know the challenges I faced. I think that is why they are planning on putting me in this position.
People are different, though, and I don't assume that I know everything just because I had a similar experience. My mom is a hospice nurse, and through her accounts I know how often the families feel the healthcare system has failed them. I'm hoping that I can help them find solutions.
What is interesting about all the answers is that they are things that really should be obvious--and yet they are things that are easily forgotten. So thank you for reminding me. I really am grateful.
That link was out of date so I am putting that national link page here.link text
Many states have adult day care centers for Seniors. Try a search by putting your state's name living at home adult care. My state came up with advice and links. We have been through this situation with my mother-in-law and it took a lot of perseverance to find her the services she needs. This is what my search came up with.link text
I'm sorry that I don't have any experience to share or advice to give....I just wanted to say "Good luck" and send my best wishes to you. You're doing an awesome thing by volunteering.
I agree with Marianne, it is a wonderful thing that you are volunteering.
I have listed a website (National Institute on Aging) that has a Caregivers Guide [link] (http://www.nia.nih.gov/alzheimers/publications/caregiverguide.htm) Also, please be sure to take care of yourself as well. I hope that you have a supportive director of volunteers with whom you can discuss your experiences (partciularly the painful ones). Best wishes to you in your work!
Hi Matron, I've sent you a PM with my advice . I didn't want to post it on an open forum because it's personal. I hope you find it useful.
PS. I really admire you for volunteering .
I welcome PMs too. I realize that this may be too personal to put on a forum, though it didn't occur to me when I first posted.
Nametaken gave me some helpful advice, and I'm glad that I was sent a PM rather than not hearing useful advice at all.