Issue 3

In the fall of '97, the AD & Dementia Support Group choose the color teal for our "ribbon". Just as AIDS has a red ribbon, Breast Cancer has pink, we deceided to have a ribbon to raise awareness for AD. There was a lot of discussion at group meetings about the color, about reactions when we wear them. One thing I found out is that most people think AD is a "normal" part of aging. Something that happens to everyone. It is that kind of thinking that keeps us from getting more research and more help for our loved ones with AD. While there were other objectives with that project, it raised the fact that we are all desparate to help fight this illness and find a cure. The 'puter keys flew! We all worked together! It is with that spirit that Jamie and I picked THE RIBBON for the name of our newsletter. It symbolizes the connection we all feel, the way we are all woven together in our common fight. We encourage all of you to contribute to THE RIBBON and thank you for your kind words of support. Karen :)

Since this newsletter is to keep us together in our fight to deal with and overcome this disease, we wish to repeat the following bulletin from MeeMawMoe:

Action is needed immediately by Alz. ADvocates! The white house is considering a recommendation to FREEZE funding for the National Institute of Health. This could result in either no new funding or a cutback in funding for Alz. research. Please let the president know that funding for medical research, particularly Alz. research, is a priority. Call, fax, or email the White House as soon as you can. The phone is answered from 9 a.m. to 5 p.m. Eastern Standard Time. Phone (202) 456-1111; FAX (202) 456-2461; E-mail president@whitehouse.gov This is certainly not what we need now. It will take away some of our hope. NIH is where Jerry goes to help with research.

Hugs, Sharon

Again, this is extremely important in our fight against this disease

We told you last issue that we would have articles about Senior Law and Nursing Homes in this issue. Well, there is just so much info about nursing homes and since it comes up so regularly in our chats that is what we are going with. We hope to have Senior Law in Issue #4. Again, if you have any contributions about the topic we welcome your input.

The Choice To Care At Home

The decision to provide home care for a dementia patient often may not seem like a choice. For instance, the cost of long-term care may be too expensive to consider. On the other hand, home care is only possible if the caregiver has the practical and emotional assistance of others as well as sufficient financial resources. That is not to say that a dementia patient cannot be cared for at home. According to the U.S. Department of Health and Human Services Secretary's Task Force on Alzheimer's Disease, most people with dementing illnesse are cared for by their families for the majority of their illness. Before deciding on a care plan, you might consider the following:

• Will you have to give up a job or reduce your work hours to care for the patient at home?
• How much will it cost to use a day care program, paid companion, visiting nurse or other outside help?
• Will insurance cover medical expenses, nurses aides or paid companions?
• How do home care costs compare with nursing home costs?
• Are you eligible for financial assistance if you choose long-term care placement? Some other considerations are outlined below.
• Dementia patients may develop the habit of wandering. Can you prepare your home so the patient can wander safely?
• If the services of a paid companion or a visiting nurse are needed, do you have enough space for an additional person?
• Eventually, the patient will require assistance with bathing and toileting. Are you physically capable of helping the patient?

Whatever your decision, be aware that as the disease progresses, needs may change, and you may have to re-evaluate the choice you have made.

When To Consider Relocation

Everybody has limitations. At some time, the patient's needs may be more than you can handle, or a behavior problem such as wandering may cause you to risk your health. If the time comes to consider placing the patient in a long-term facility, such as a nursing home, look at the situation realistically, practically and honestly. By acting responsibly in making decisions about care, you are not abandoning your loved one. Your time and devotion will continue to make the patient's life better wherever he or she lives.

How to CHOOSE a Nursing Home That Actually Cares

Making the decision to move a parent into a nursing home is painful. Finding the right place can be just as trying. Here are some tips to help guide you. --Consult the state's survey of inspections. Each state conducts inspections about once a year and issues a survey of its findings that should be available at all nursing homes. Even a good home may be cited for deficiencies, but they should be minor and promptly fixed. Bad signs: problems affecting residents' health, or an inability to produce the most recent surveys. Federal law requires each state to have an ombudsman's office with information on all nursing homes. To contact your ombudsman, call the National Citizens' Coalition for Nursing Home Reform in Washington at (202) 332-2275.

• Make an unannounced visit to prospective nursing homes. Look, listen--and smell. Wander hallways, speak to residents and staff, get a sense if both enjoy being there. A nursing home that won't let you visit unannounced may well have something to hide. Look for clean, well-groomed residents. Discreetly try to assess oral hygiene. Listen for the staff's tone in dealing with residents. Make sure that nurses and aides mingle with residents and don't view their charges as widgets on an assembly line. While most nursing homes occasionally smell of urine and feces, there should be no persistent stench or overwhelming scent of air fresheners.
• Keep your eyes open. Watch the call lights that residents use to summon help. See how long it takes for help to arrive; more than five minutes is too long. Look for obstacles or puddles left in corridors that could endanger frail residents with failing vision. Visit during a meal: assess the food, and check that those who can't feed themselves are helped. Keep your eyes peeled for residents in restraints; the more you see the more leery you should be.
• Once you've picked a home, visit frequently. Residents with an attentive family and regular visits tend to receive better treatment than those who are essentially abandoned.

--M.T.

Nursing Home Checklist

This checklist is designed to help you evaluate and compare the nursing homes that you visit. It would be a good idea to make several copies of this checklist, so that you will have a new checklist for each home you visit. After you have completed checklists on all the nursing homes you plan on visiting, compare your checklists. Comparisons will be helpful in selecting the nursing homes that might be the best choice for you.

This checklist may be reproduced and circulated. It is designed to be used in concert with the Health Care Financing Administrations booklet, The Guide to Choosing a Nursing Home. This booklet can be obtained by calling (800) 638-6833.

Your Rights as a Relative

Relatives and friends have rights too. Family members and legal guardians have the right to privacy when visiting the nursing home (but only when requested by the resident.) They also have the right to meet with the families of other residents. If the nursing home has a family council, you have the right to join or address this group. By law, nursing homes must develop a plan of care for every resident. Family members are allowed to assist in preparing the development of this care plan, with the resident's permission. In addition, relatives who have legal guardianship of nursing home residents have the right to examine all medical records concerning their loved one. If you are a resident's legal guardian, Federal law gives you the right to make important decisions on behalf of your relative. It is important to remember that relatives play a major role in making sure that residents are receiving good care. You can make sure your loved one is receiving good care by visiting often, expressing your concerns whenever they arise, and being active in the nursing home's family council (or helping to start a family council if the nursing home does not have one.) Remember that if your concerns are not being addressed by the nursing home or if you have a complaint, there are people who can help. Contact your state long-term care ombudsman or state survey agency.

Helpful Links

Guide to Choosing a Nursing Home-
This is a wonderful site and can answer most any question you might have. A lot of our information came from this site. There is so much info here you just have to click this link and go there.

Mental Health Net - Aging & Geriatric Resources-
A guide with links to help you find most all answers. It even has a reader rating system, "Thumbs Up or Thumbs Down"

Comments from our Members

From Aroline1

I was so happy to receive the second newsletter. It means so much to me, as I find it very difficult to be in the chat rooms with so many people talking at once. This letter has been my great help for the last year. (with Bill also). It has been my connection to COMPASIONATE FRIENDS whom I feel I know and can connect with. I have received so much help from you all. Yvonne, Kmenges, Drmom , Photoltj, Lilauthor, and those who put me in touch with the Alzheimers Page. You have all made me able to stop feeling angry and being sorry for myself. I am now quite proud and happy about the job I am doing. It is certainly a better feeling. I am still waiting for the info from Alaska Alz group and the info from Orange County, and I will send it on as soon as I receive it. Many thanks again for your wonderful work.

From Choovie

My mother in law lives quite a ways from me...I am in WV and she is in PA (150 miles away). Sometimes I feel like I am her only hope. My sisters-in-law seem to be in denial about the whole thing...I told them for 6-7 yrs that I felt she was in the first stages of alz...Finally, I talked them into getting her a physical. She was found to have a pronounced shrunken frontal lobe and referred to a neurologist. The neurologist confirmed my "diagnosis" - dementia. Dr. is still not sure if it is alz or picks, but it is definitely dementia. This diagnosis was 2 yrs ago. I am trying to get them to have another MRI done to she the diference in the first one and now to see what we are dealing with...but they know best...so they think. Being the daughter in law has its draw backs. I feel like I am beating my head up against a wall. The Dr still says that she can live alone...scares me. She forgets how to cook and has a gas stove....not good. She used to be an extremely cautious driver,,,then she was a slow driver,,,now she passes people on a double yellow line (but they don't believe me). There's more... But ... since the DR says that she can live alone, they feel the Dr is the specialist on the subject. You see, Mum does real good at keeping herself in line for short periods of time (couple of hours, maybe most of a day) when she concentrates on someone else being around, but if you stay overnight or longer (as I do) it becomes harder for her to hide it. It is no longer just a memory thing...it is irritability, confusion, even hostility. Everything that others have mentioned on the call, I have seen. I really feel like the call is so helpful...no longer does my hubby feel that some of the things I have mentioned as symptoms are just my thoughts. He is very supportive, but lives in the dark ages sometimes. Well, gotta go, thanks for listening. Cheryl

From Clh52

Thanks so much for the newsletter. Can't tell you how much I appreciate it. I suppose Mom was in Stage 4 - 5 when she came to live with me about 5 years ago. I have pretty much gotten over the guilt of not visiting her more and intervening earlier. I'm 45 now, and finally growing up, much due to Mom's presence. I wish she could know that. I don't have any kids and divorced about 20 years ago. Never had any responsibility except for myself. Mom has helped me so much - now that I'm finally a daughter she would be proud of, she has lost awareness. Anyway, I'm grateful that I chose to have her with me .. Christmas Eve 1995, she had a pathological spinal fracture due to osteoperosis. She never regained the skill of walking. They wanted to hospitalize her for pain management, but I protested because I was vehemently opposed to intrusive procedures: catheter, feeding tube, IV sticks, not to mention the noise and impersonal atmosphere of a hospital. So, I took her home, and fed her sips of pureed food (she would hold the food in her mouth and not swallow). Soon thereafter, began using 60cc syringe, because she hated to eat so much. Her appetite had nearly dwindled away several months before; she would sit at the table for an hour, eating like a bird. Tried Ensure, previously favorite foods, Ensure, but nothing aplealed to her. Pain was adaquately managed with small doses of Tylenol #3 elexir. I got home health. They quit physical therapy after 5 or 6 visits, because it was obvious she could no longer walk. I was most fortunate to find Tammy, who stays with Mom while I work and also helps out on weekends so I can have some time. Tammy has truly been a gift. Despite Mom's feeble protests, we were able to get 1500cc of nutritious liquids in here by syringe. She would silently cry when fed.It was one of the most painful things to watch, much less do. I couldn't bear to let her starve to death, which she would have done without our feeding her. Around August 1997, she began vomiting; not often, just couple of times here and there. Occasionally, her stools would be dark, and tested positive for blood, but she was in no accute distress; just absolutely miserable. I was concerned, went to a doctor (hers had moved out of town without notifying us, and was a neurologist who became disinterested when Cognex was discontinued due to no therapeutic response) and asked him to make a home visit, as ambulance was only means of transport for an office visit due to her condition. He was so kind; came by, said she needed to be in hospital. We had very long talk about peg tube. I finally agreed it was a treatment, not life-extending measure. Mom was wasting away. When they inserted the peg tube, a large bleeding ulcer was seen in the duodenum. They cauterized it, and started her on Zantac. She was home in 4 days, gained 10 -15 pounds within a month, became more alert, has not shed a tear since. Dr. Mom, I had always sworn I would never never do tube feedings. The whole time she was in the hospital, I was second guessing myself, having no family involved in her care or decisions. I can only say that God was truly with me, because Mom is happy in her own way, free of pain, and loved very much. Without the procedure, she would have died of a perforated ulcer. An acute abdomen is very painful. I am so fortunate to have had a caring doc who took the time to make a house call - something that is not done in large cities. Thanks for listening. I know most people don't believe in tube feedings; neither did I. Well, I'm punch drunk form no sleep and this chair is not very comfortable. Thanks for ya'll being there, offering a place where I can listen, talk and share.

From AZUREE1650

Many thanks for your most helpful information. It has given my daughter and I more data than Mother's primary Dr. and Neurologist, combined. We asked what we thought to be very important questions and got very little from them. They are vague and seemingly, not interested. I have heard this from other people who are caring for elderly or those with Alzeimers and Dementia. Your time is very much appreciated. Fondly, Charlene

From NO900

My one dislike about nursing homes, (maybe not all of them) is that when they bathe patients who often wet the bed and need to be changed is that they strip the person naked and proceed to wash them in a room where the air conditioner is blowing cold air. It would be nice if they partially covered the person upper or lower at a time. My poor mom who had AZ felt the cold but all she could do was scream and the nurses or aids just kept washing with no compassion. They said they have to do this every three to four hours and it still bothers me after a year when I think of other patients being treated like this. I'm glad they keep them clean . A sheet blanket would work fine for bed baths. Sincerely, NO900

From NunyaBwax

Thank you so much for the wonderful newsletter. I need all the support I can get right now, and I appreciate you all being there for me. My mom died on April 22, 1997. I can't beleive she's been gone almost a year. Her death was rather unexpected. My dad was the one with all the health problems, and we all thought he would go first. Mom was always the strong one. After mom died dad was able to continue living on his own with some help from me. I would go up to his place and do his laundry, the heavy housework, and pay his bills. He doesn't know how to right out a check. My mom did everything. But he was still driving, doing his own grocery shopping, and cooking. In early December my father called me up telling me he was having chest pains. I thought he was going to die. He was rushed to the hospital where he stayed about a week. After all the test results came back we were told his heart is in pretty bad shape. But because of his age and health problems (prostate cancer, prior heart surgery, pacemaker) the doctors didn't want to perform any surgery. I agreed. He was released from the hospital and sent to a cardiac rehab. It reminded me of a nursing home, and leaving him there broke my heart. He begged me to take him home, but if I had him discharged against doctors orders the insurance wouldn't pay the bills. Luckily dad was released in my care after only 5 days. I wasn't prepared to lose my mom, and I certainly wasn't prepared to care for my dad. The doctors told him he could no longer drive. His short term memory has gotten very bad. He can no longer live alone. And we're in the process of selling his home. It breaks my heart.... first he loses his wife of 54 years, then we take his car and home away from him. He's on 5 pills a day to stay alive, and this medication makes him feel horrible. He has daily bouts of depression, and I just don't know what to do for him. What kind of life is this? My sisters flew into town 2 weeks ago to celebrate dad's 80th birthday. My father stayed at his own home with them. I felt like a nervous mother having him stay there....wondering if my sisters could care for him as well as I could. BUT....it was wonderful NOT having him here. I felt free. I had MY life back. Now dad is home with me again. I never know what each new day will bring. Will he feel ok? Will I have to call 911? Will he die today? I live with tremendous guilt, as part of me wishes he would go soon. I know he won't be happy until he's with my mom. Thanks for listening.

Introducing Your Newsletter Staff

KMenges581

I live in New Jersey, near Atlantic City. I have a son and a daughter, both grown and married. Matt and Julie are my delightful grandchildren. My Mom, 75, was diagnosed 5 yr. ago. She lives 400 miles away in a small town. My brother and his family are there also. I have been a regular member of the AD & Dementia Support Group for almost a year. This wonderful group of people have literally saved me from despair.

DrMOM1955

I live in Nashville, TN with my husband and my two teen sons. They are the last of our 8 combined children. Whew!! So far we have a total of 8 grandchildren. All but 2 live in TX, where we lived until 3 1/2 years ago. My grandmother, Nanny 86, was diagnosed 4 years ago. We live next door to her and my 84 year old grandfather. I have been a member of the group for 5 months. I went in scared and not knowing anything. The group hugged me and has taught me what I need to know to cope and deal with this wretched disease.

Again, just to let you know, we will be dealing with Senior Law in the next issue. We welcome any comments or ideas you may have concerning this topic or any other topic. See you in two weeks.

Karen (KMenges581)
and
Jamie (DrMOM1955)

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