December Entry

 

It's December and things are going along, bumpy, but okay. My little mom has a few more delusions than before but she still enjoys eating popcicle, sitting outside and feeling the sunshine on her face, and getting hugs. Not the mom who raised my brother and me but still mom. I wonder why this terrible disease has been visited on her and thousands of others but no answer to that ever comes. We just have to deal with it minute by minute. We plan to go to our sons on Christmas Day and they are good hosts so I know we'll have a nice time.
I'm posting a few pictures that Cyndi took of books that were donated to her classroom by family and some unknown donors. The Special Ed kids she teaches will enjoy them as will others who come after them. They were donated in honor of Frank's sister Liz, aka Virginia Elizabeth Carr, who was much loved by the family.
Many thanks to Cherly, Evie, and the others who donated.

                                                               

 

I saw this a while ago and the power of it has stayed with me. The artist William Utermohlen created these self-portraits as his disease (Alzheimer's) progressed. It's heartbreaking isn't it? If my mom who is suffering from the same disease could draw I wonder how she would portray herself.

Catch up on a hot November Sunday



Our mom Nellie, Mike, Cyndi

Cyndi, Frankie, Pam, Evie

Things are going pretty well.The mobile unit came with a group that included a doctor, speech therapist, and an aide. They ran a swallow test on mom and as suspected it showed that she has dysphagia and is at high risk for developing pneumonia from aspirating liquids and food. We had a follow up visit that gave us tips and information on the types of food and drink we should be serving her. She also had to make a trip to the dentist to repair a filling she had been picking at and finally flicked out. Since no water can be used to cool a drill, wash out, etc. they had to do an acrylic one that while not pretty at leas filled the hole left and will prevent anymore decay from setting in. She then had a blood test to check her potassium level. So it was a busy few weeks for us all. She fell last week coming out of the bathroom and Frank got to her before I did and he picked her up and put her on her bed. Luckily she did not hurt herself. She's very wobbly these days so falling is a something we have to watch out for. At a physical therapy session they showed me how to fall with her and let myself take the brunt of it. Hope I don't have to use that technique but something learned is always a good thing.
We did the early voting thing. I went by myself and then my husband and granddaughter went. Wanted to take mom and brought home a sample ballot but she really didn't know what was up. Also (and this made me cry when I saw it) she has trouble signing her name. When the physical therapist had her sign her visit paper mom was printing letters and she printed an 'n eo' and then an 'L' on another line. First time that ever happened. She also forgot how to brush her teeth. I put the toothpaste on the brush and get her started and then she is okay. The decline is slow and painful to watch but she seems happy and we are able to keep her comfy, clean, and fed. I think there are more good days then bad days.
Yesterday our grandson (who just got his Cosmetology license) came and cut my hair, our granddaughters, and mom's. He did a great job and we all good. :-)
The photos are some I found and I don't know if I posted them before but if I did just ignore them. ;-) The one with mom was taken a few months ago when they were taking her to a dance. The one of the brothers and sisters was taken in August when Evie was here.

Things are going pretty much the same. No word on when they will come do the swallowing x-ray for mom but I guess it will be soon. She's doing fine, a little wobbly when she walks and a lot confused in the afternoon. I did find a new term for a phenomena that a lot of caregivers experience. When caring for a dementia patient you sometimes find that they can appear as if nothing is wrong with them in front of strangers or people they do not often see. This behaviour is called 'Showtimers'. The patient can muster up the strength to be at their best, for a while and sometimes it can appear to others that they are not suffering from dementia. My mom has done this but it gets harder and harder for her to do it these days. Again, this disease is horrendous, maddening, and frustrating. I wouldn't wish it on anyone.

We got some rain and today this morning the temperature is cooler but it was around 90 yesterday. Sigh, this up and down temperature mode is annoying but it's common for central Texas.

Photos

There photos here. Frank's brother Richard came into town for a conference and stopped by for supper and a visit with us. All the men came by as you can see. Second photo is of Richard and Frank. Third picture is of the flyover of the space shuttle. Not a good photo because it was misty and cloudy that morning and the plane was already gaining altitude by the time we saw it. Still it was fun to watch it fly by.



space shuttle flyover-austin, tx 2012



Time flies even when you are not having fun

Geez whatever I thought of posting has fled my mind. Guess it might be because my husband and I got to go out and eat at the Olive Garden, alone, and had a nice time. Our daughter Cyndi came by to sit with my mom and we thank her for that. Also got a break last weekend when our eldest daughter Pam came down and we got to scoot out of the house for a couple of hours to shop. It was nice.
Mom's skilled nursing is over as her orthostatic hypotension is now under control. A speech therapist came by on Friday, not to assess her speech, but to evaluate her swallowing. Mom coughs when she drinks any kind of liquids and it seems you use the same muscles to swallow that you do to talk, or something like that. Anyhow she put sent her report to her doctor and they will come and do an x-ray of her swallowing here at the house! Who knew they could do that? Not us for sure. It's better to have medical people come to the house because it is easier on my mom. We took her to the doctor this past Monday and aside from her having low potassium she was doing as well as can be expected. So I'm giving her liquid potassium once a day for three weeks and then they will repeat the test. My days are filled with care giving, doctor visits, health care nurses (now over) and the like. At least I know what is happening to my mom and she's not scared and alone in a strange place. Sometimes she doesn't think she lives here and thinks I'm someone else and I shudder to think what she would do in an unknown environment. End of life care especially when complicated by dementia of the Alzheimer's type is very hard but I draw strength from my family and that certainly helps. One thing I sorely wish for is for mom to let us bring in a paid home health care aide but I don't see it happening anytime soon. She barely let the nurse in the house and sometimes she had to see her out on the patio.
One day while helping to prepare dinner I had left mom on the patio and checked on her every fifteen minutes or so. Well while I was getting pans out from the cupboard we heard a knock on the door and it was a lady that said there was an elderly woman tyring to flag down cars (thankfully from inside the fence that had a locked gate). She told the lady she had been kidnapped and that we were going to kill her. Thank goodness the lady in question said she had gone through something similar with her dad and knew what was happening. So mom has to be watched much closer than I thought. Oh well you do what has to be done.
So kudos to all you caregivers out there. It's a tough job but one I think is doable. Just give yourself a break now and then, easier said than done, but something that is needed.
On a more upbeat note Frank's brother Richard came by for a nice visit and the two bros got to chat and chat for hours. It was fun having him here and listening to their stories. I know it did a world of good for Frank. I'll post a picture or two later on.

A Quite Saturday Morning

I found this question on site I visit quite often agingcare.com. This question could have been asked by me with just a change in the wording  from 'father' to 'mother'. The answer gave me some insight, so I hope it might help others deal with someone suffering from dementia too.
The past week has had it's ups and downs. Yesterday was going pretty well until my mom started yelling and scurrying down the hall that a 'lady' had told her to come out into the hall so she could tell her that she was going to be arrested so she could get her house. Somehow the thought of losing her home weighs large inside my mom's mind and she comes out with different scenarios about people trying to take it away from her. We do our best to reassure her that all is well and most times we can calm her. All I can think is that at times it must be hell inside her mind. The 'long goodbye' is indeed a cruel disease. I hate it.
The lines marked in red are what we identify with the most in the article.
Q: It hurts to see my father with Alzheimer's deteriorating before my eyes. How can I accept the decline?
A: Many people who have experienced a loved one's dementia have said that given the choice, they'd rather deal with almost any other ailment, no matter how painful or debilitating. There's little we can do to fix the deterioration of memory, communication skills, and reasoning that dementia steals away. Few experiences are as frustrating as watching a once-vibrant person deteriorate into a confused stranger. It's not fair, it's not right, and it's hard to accept gracefully.
Try to remain calm. Pain and helplessness breed anger, and anger about the situation may spill over onto the person. Answering the same question 20 times in one afternoon or hearing your loved one recite a skewed account of events for the hundredth time can make you want to scream, but losing your cool helps nobody. Remind yourself that your father did not develop dementia to annoy you: He's not doing it on purpose, and he can't help it. And it isn't your fault, either. It just happened.
So change the subject. Suggest that you go out on the patio together and look at the flowers. If all else fails take a break, and do something that will help you regain control. Take a walk or grab a cup of tea. Call a friend. If you can keep your wits about you, remain in control, and take care of yourself, you'll be more "present" (and pleasant) for him, and you'll both benefit.

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Robert Bornstein, PhD, is Professor of psychology at Adelphi University, and co-authored "When Someone You Love Needs Nursing Home, Assisted Living or In-Home Care."

Regarding the horrific events in Aurora, CO. All I can say is that our hearts go out to the families of the victims.

More on Care Giving

I found the following information on the Family Care Giver Alliance site. Some good information here. The sections I've put in red are some of the very things we've been dealing with. I've also found good support and help on other care giving sites. It's great because you learn how to deal with the problems you and your loved ones are facing plus you know you are not alone in this fight.
My mom has been having episodes of severe anxiety the last few weeks and first I try to talk her down but sometimes I have to resort to one half of an Ativan pill. I have an appointment set up for mom next Tuesday and have lots of questions for her doctor. For one thing mom actually didn't know who I was two nights ago and went to Frank to ask her where her daughter was. She also ask me today how to eat a peanut butter sandwich. These are all signs that her symptoms have worsened.
I must state again that taking care of my mom since her dementia has gotten worse is far harder than I thought it would be, but thanks to Krystal who helps out and my husband Frank who is as patient as the day is long with her my task is much less stressful than it would be without them. Thanks to Cyndi and her boyfriend Michael for taking her out dancing and coming in to sit with her now and then and to Pam for her expert medical advice and to Evie for her support and holistic medicinal suggestions to the situation we are all facing together. Also thanks to our son Frankie and his wife Sandy for their unwavering support and always hosting such nice family get togethers to get us out of the house and be able to feel normal for a while. I'm going to try again and get a home health care worker in here again but it's going to be difficult. Wish us luck!
My neck problem is still there but the pain is tolerable so I'm not going to go into that problem for now.
I hope you find the following suggestions helpful. I know I did and hugs and good luck to you in your quest to be a care giver to a parent, spouse, or other loved one.

1. Being Reasonable, Rational and Logical Will Just Get You into Trouble. When someone is acting in ways that don’t make sense, we tend to carefully explain the situation, calling on his or her sense of appropriateness to get compliance. However, the person with dementia doesn’t have a “boss” in his brain any longer, so he does not respond to our arguments, no matter how logical. Straightforward, simple sentences about what is going to happen are usually the best.
2. People With Dementia Do Not Need to Be Grounded in Reality. When someone has memory loss, he often forgets important things, e.g., that his mother is deceased. When we remind him of this loss, we remind him about the pain of that loss also. When someone wants to go home, reassuring him that he is at home often leads to an argument. Redirecting and asking someone to tell you about the person he has asked about or about his home is a better way to calm a person with dementia.
3. You Cannot Be a Perfect Caregiver. Just as there is no such thing as a perfect parent, there is no such thing as a perfect caregiver. You have the right to the full range of human emotions, and sometimes you are going to be impatient or frustrated. Learning to forgive your loved one as well as yourself is essential in the caregiving journey.
4. Therapeutic Lying Reduces Stress. We tend to be meticulously honest with people. However, when someone has dementia, honesty can lead to distress both for us and the one we are caring for. Does it really matter that your loved one thinks she is the volunteer at the day care center? Is it okay to tell your loved one that the two of you are going out to lunch and then “coincidentally” stop by the doctor’s office on the way home to pick something up as a way to get her to the doctor?
5. Making Agreements Doesn’t Work. If you ask your loved one to not do something ever again, or to remember to do something, it will soon be forgotten. For people in early stage dementia, leaving notes as reminders can sometimes help, but as the disease progresses, this will not work. Taking action, rearranging the environment, rather than talking and discussing, is usually a more successful approach. For example, getting a teakettle with an automatic “off” switch is better than warning someone of the dangers of leaving the stove on.
6. Doctors Often Need to Be Educated By You. Telling the doctor what you see at home is important. The doctor can’t tell during an examination that your loved one has been up all night pacing. Sometimes doctors, too, need to deal with therapeutic lying; e.g., telling the patient that an antidepressant is for memory rather than depression.
7. You Can’t Do It All. It’s OK to Accept Help Before You Get Desperate. When people offer to help, the answer should always be “YES.” Have a list of things people can do to help you, whether it is bringing a meal, picking up a prescription, helping trim the roses or staying with your loved one while you run an errand. This will reinforce offers of help. It is harder to ask for help than to accept it when it is offered, so don’t wait until you “really need it” to get support.
8. It Is Easy to Both Overestimate and Underestimate What Your Loved One Can Do. It is often easier to do something for our loved ones than to let them do it for themselves. However, if we do it for them, they will lose the ability to be independent in that skill. On the other hand, if we insist individuals do something for themselves and they get frustrated, we just make our loved one’s agitated and probably haven’t increased their abilities to perform tasks. Not only is it a constant juggle to find the balance, but be aware that the balance may shift from day to day.
9. Tell, Don’t Ask. Asking “What would you like for dinner?” may have been a perfectly normal question at another time. But now we are asking our loved one to come up with an answer when he or she might not have the words for what they want, might not be hungry, and even if they answer, might not want the food when it is served after all. Saying “We are going to eat now” encourages the person to eat and doesn’t put them in the dilemma of having failed to respond.
10. It Is Perfectly Normal to Question the Diagnosis When Someone Has Moments of Lucidity. One of the hardest things to do is to remember that we are responding to a disease, not the person who once was. Everyone with dementia has times when they make perfect sense and can respond appropriately. We often feel like that person has been faking it or that we have been exaggerating the problem when these moments occur. We are not imagining things—they are just having one of those moments, to be treasured when they occur.