Longevity

Writing this blog gets to me sometimes, mostly its therapeutic but sometimes it's just emotionally too hard. After a long break, I am back at it, here's one from February I never got around to posting.

February was a big birthday month. We had the privilege of having both my dad and father in law visit for their birthdays. We gathered the kids and grand kids and made lots of their favorite foods.

two men, two birthdays...

94 years old

My Father in law turned 94 on February 13, 2013. He's a good guy. We celebrated with omelets. sticky  buns and a birthday dinner of Scottish meat pie. My husband flew with him to Florida where he'll spend three months with my brother in law. Dad lives alone and has stopped driving. His son in law is his main caretaker. Richard drives him to appointments and grocery shopping and checks on him daily. His hearing isn't so good. His hearing aides work ok. He makes odd sounds, one in which we call his hootie owl sound. He has a good sense of humor.  He is able to still take care of his own medications. His mind is good. He's lonely and misses his wife, Mary, very much.

90 years old

My Dad turned 90 on February17th. We had a party with all my siblings. We brought him clam chowder all the way from Maine. I was able to then bring him to our house for a few days. He requested blueberry pancakes and roast beef with potatoes and carrots for his birthday dinners. He is in good health. He doesn't hear well either and his hearing aides don't work very well. One is usually lost or broken. His mind is pretty good. He is an avid reader and reads at least one book a week. My dad visits my mom (who has Alzheimer's disease) twice a day. He eats dinner with a group of men that also live at the progressive care facility where he lives. He wants to live to 100.


And this is our cat, the equivelent of 90 years old. I think he might live to 100 too!

So there you have it, longevity turns out different for everyone. Some go to bed praying they won't wake up, others want to live to be 100 and some just keep plugging along. 

When doctors are cowards...

Some doctors are cowards. Those are strong words that come out of significant frustration.

For several years before she had a diagnosis of Alzheimer’s, our family knew something was wrong with Mom. With her in denial, it took a lot to get her to talk to her physician about our concerns. It took even more convincing for her to keep the appointment with the neurologist. So when we finally did get her to ask and then go, we had an expectation that we would have some support, but that was not our experience. I know that there are some awesome docs out there. I am a nurse and I see and work with some fantastic practitioners, but our experience with our mom and her Alzheimer's and getting help and support was not a good one.

Our mother's doctor, whom she had seen for 25+ years, told her for years that what she was experiencing was simply age-related and to tell her children not to worry, that our concerns were unfounded. Even when we approached with concerns about her driving, He said, “If they can see and they can walk, then they can drive.” We were on our own in keeping Mom and Dad safe. We got to the point where we were concerned that my mom could have an accident and kill someone. It made it much more difficult that her doctor did not support us when it became time to take her keys away. This was a difficult time for our family, and although my mom's doctor did not seem to agree with our concerns, he did fill out forms which my mom had given him for getting a test through the state’s motor vehicle department. Three months after we took the keys away she got a letter asking her to surrender her driver’s license. By that time, family healing had started and this just brought back anger and paranoia that we had her driver’s license revoked when it was her doctor who filled out and sent in the forms that she had given him. Even though she was no longer driving, having to relinquish her driver’s license was another blow that she blamed on us. 

When we finally got Mom to agree to see a neurologist, she cancelled appointments on us to the point that we had to tell the doctor's office to not let her reschedule or cancel again. We sometimes waited months for these appointments. We were only able to say this because my brother had Power of Attorney. My parents also had previously included us on their HIPPA forms. We have each fallen into different roles. Shortly after this, I was named by my parents to be their healthcare proxy. All the siblings agreed that someone needed to accompany Mom to her appointments. Although she didn't like it, it was important that she have someone with her when meeting with her doctors. At this point Mom was often very confused. She could no longer fill out forms and Dad was often unable to give accurate information. My sister was helpful in this area and she and Mom made a deal that she would help with forms and go to the appointments but each would have time alone with the doctor. There were some appointments when both parents and my siblings attended. 

When the neurologist was discussing the results of our mother's evaluation with my sister, she questioned why, if it was, in fact, Alzheimer's disease, didn't the doctor use those words with our mother? The doctor replied, "I don't use the word 'Alzheimer's' with my patients because it is very upsetting.” So there we were with a mother who continued to be in denial and the only ones telling her something was wrong was her family. It was so hard to help Mom as she was so angry with us. When she got results of a scan that showed spots on her brain indicating plaques I called them, "Lynda and Robin spots," because she believed we were the ones causing the stress that led her to forget. 

I just wish that while she still could have understood – however upsetting it would have been – that her doctor or some professional outside the family would have had the guts to tell her what she was dealing with. I think she could have come to terms with it better and it could have avoided her anger towards the ones that love and care for her so much. It would have been better for her doctors to talk frankly and explain her Alzheimer’s diagnosis.

Once our parents moved to a progressive care retirement community, we found a fantastic nurse practitioner specializing in geriatrics that has been tremendously helpful with Mom, Dad and the family. She was able to handle difficult situations with honesty and compassion, giving practical guidance each step of the way. Unfortunately, once Mom was placed in the nursing home her care was transferred to another doctor in the practice. This was difficult as we don't know him and he doesn't know Mom. He has appointments with her without any family knowledge or involvement. The nurse practitioner continued to treat my dad until she moved away. Once you experience this level of excellent care, it makes you want to seek that level out; it's there, it's just been very hard for us to find. Perseverance can be exhausting.

If you find yourself in a similar situation, consider finding another physician, especially one who specializes in geriatrics. Many larger hospitals have geriatric assessment programs that evaluate the patient completely using several practitioners. Here is a sample of one such program:  http://www.amh.org/services/senior-health/geriatric-assessments/. It's important to maintain trust, because as the disease progresses trust is challenged. As seniors age it's helpful to bring a family member to appointments, and add them to HIPPA forms. Discussions about Power of Attorney, Healthcare Proxy and Advance Directives should take place sooner rather than later.

  

Guidelines for visiting the nursing home

Guidelines for visiting my mom... and/or visiting anyone in a Nursing Home

Visiting a nursing home can be both difficult and sad. When my mom was younger, she was really good at it. She knew what to say and what to do. Not everybody does. Visiting pushes many people out of their comfort zone. I'm hoping this list might relieve some anxiety:

1. Take the children; the residents love seeing children, as they are noticeably lacking in a nursing home setting. When we were kids, Mom often took us to visit nursing homes. It's a good thing she didn't let me sing, but my siblings did a fine job. So take the kids, but remove unruly or screaming children ASAP.
2. Animals. Check with the administration, but usually many kinds of pets are allowed to visit. Mom loves seeing dogs. We don't have a dog but there are residents in the independent area that visit regularly with theirs. If we see a dog making the rounds, we make sure Mom gets time to pet it and see it for a few minutes.
3. Smile.
4. Interact with others. You have no idea how long it may have been since someone said hello.
5. Bring flowers; family members should provide a vase that stays there.  We try to keep fresh flowers in Mom’s room.  Water plants or change water in the vase as needed. Throw away dead or wilted flowers, and rinse the vase.
6. Give your loved one a drink. Of course, you need to know about any restrictions on food or drink as some older people have restrictions and/or have trouble swallowing. When in doubt, ask first.  My mom is often thirsty but she can't/doesn't make her needs known. We have been told that she doesn't drink enough. Her labs confirm this. Instead of asking Mom if she wants a drink (she'll often say no or doesn't respond), I get her a drink with a straw and place it at her mouth. Since I have been doing this, the response is great. She'll smile, lick her lips and gesture for more. She takes in several small cups over the course of a visit.
7. After making sure the person is not on restrictions or a special diet, give them something to eat. The home where my mom is living has cookies or a snack for the residents in the afternoon but they have to come to the common area in order to get it. They use this practice to entice them out of their rooms. While well intentioned, this didn't work with my mother. They now have snack carts for family members to get snacks for their loved ones. While providing a snack for my mom, on this past visit I got a drink and snack for her roommate. It was the first time she talked and interacted with us.
8. Read something. The family should have some things available: a Bible, devotional book, a children's Bible story book, a favorite children’s book. Recently we left an old “Child's First Bible” in the room. The stories are about a minute long. My mom taught Sunday School, Children's Church and Kids for Missions until she was 81. She had a fantastic career as a diagnostic preschool teacher. One of her favorite books was Brown Bear, Brown Bear. Her great granddaughter read it to her on her last visit. We also have a photo album that is labeled with all her family's names.
9. Make them comfortable. Sometimes we find Mom’s room is too cold or too warm.  Let staff know if you change the temperature. Knowing a person's preferences is helpful. Share these with the staff. A simple thing like closing the blinds on a bright sunny day can be welcomed. Mom can't asked someone to do this and she can't do it herself so we have found her under her covers on a sunny day.
10. Make effort to interact with staff.
11. Visit in lounge or garden with children. Give them a change of scenery if possible.
12. Touch them. Hold their hand, hug them. Mom loves a good hug.
13. Don't feel like you need to stay too long.
14. Tell them you love them.

15. Try not to cry but if you do, it's OK.
16. Come again soon. 
17. Know that the families of every patient appreciate all you do.

Living with Alzheimer's vs Dying of Alzheimer's

There are many forms of dementia; not all are considered Alzheimer's Disease. Yet Alzheimer's manifests differently in different people. My father's sister has the disease, and we would describe her as living with Alzheimer's. She is stable, happy, compliant and is able, with dedicated, amazing caregivers, to continue to live alone independently. Her short term memory is almost non- existent, but in the moment she is there. She has a great sense of humor and is quite aware that she forgets. She likely won't remember our visits but, again, does very well in the moment. She can retrieve who we are and engage in spontaneous conversation. After a few minutes though, she will forget and repeat the question or statement. She has been in this mode for about eight years.

This summer we took Dad to Maine to see his sister. It was a gift from God, as it was the best visit that we had with her in about six years. She repeated herself only once. She is so pleasant and funny. She was able to start numerous sponstaneous conversations with her brother and her nieces. She asked appropriate questions about other family members. It was a wonderful day.

My mother's disease, however, progressed much more rapidly and she is now in a nursing home. Eight years ago she didn't have any symptoms at all.  We noticed the first symptoms about 5 1/2 years ago, and she has only had the official diagnosis for about three years. Now she only knows our dad. She speaks very little, no longer walks and now has to be put in a lift for transfers. She spends most of her time in bed. When describing our mom, it seems sadly that she is no longer living with Alzheimer's, but dying of it.

Dad with his sister