Thanksgiving 2009

Today was such a good day! As long as I can remember, Mom has always loved Thanksgiving. Mon and Dad would be up very early on this special day in the past to start the big dinner for all of us. After dad passed, we all made sure things didn’t change. Today, even with mom’s dementia I made sure she played a part in preparing this beautiful thanksgiving dinner.

It was a little sad watching Mom help because I could tell that it was hard for her. Being in the kitchen seemed so foreign to her. We generally do not think it is a good idea for Mom to cook, however on this special day I found something perfect for her to help with. She was so happy  helping me set the table and putting together some appetizers on a plate. I praised her for the great job and she loved it.

This disease has robbed mom of so much, even some of her favorite things to do, like cook. She can’t remember how to make things she has made countless times. Although it’s ok because this Thanksgiving and all of the future ones that Mom is here to enjoy, we will make sure she has the very best time.

We don’t care is the knife or spoon is on the wrong side! We love you, Mom. Happy Thanksgiving.

The importance of support

Helen Keller once said, “We could never learn patience or to be brave if there was only joy in the world.” No truer words have been spoken; especially when referring to family caregivers.

Caregiving gets harder every day. My family and I experience many feelings as we care for Mom in her journey with dementia. I know for me, as one of mom’s caregivers I sometimes feel sad, discouraged and alone. I admit it…I also experience, at times, anger. Yes, but not ever at mom; only at her horrible disease. I tell myself a lot, “It is only human to be angry when faced with burdens and loses a dementing illness often brings.”

I also tell my family when caring for Mom to try to remember mom is ill and often cannot rationally control her behavior. The behavior can be very infuriating, but it is not aimed at us personally.

Thank God our family is close. We love mom very much and she will always be our top priority, however we also have to care for ourselves. We have to have the opportunity to vent to each other when times get rough. This helps a lot because we feel less frustrated and upset. Our support has to start with each other because we are a family. Support groups are also very important. In addition, there are other outlets, like going for walks to keep calm, exercising (if possible) and relaxing in a hot tub. In order for us to continue as caregivers, we must take time for ourselves.

Helen Keller also said, “The best and beautiful things in the world cannot be seen or touched, but are felt in the heart.” We love you Mom.

Mom’s humor

Mom is so funny. She’ll say, “Oh, I have to get ready to go back to work soon. I’ve taken a long leave of absence and my employer will get very annoyed at me.”

I said, “Mom, do you really want to go back to work after all being 90 years old? Maybe you might want to think about retirement.

She smiled and gave me a pat on my head and said, “Okay baby, you can’t remember right? I’m only 72 years old.”

“Right Mom; I’m sorry my memory is bad these days,” I said with a smile.

Mom said, “Yep, you’re right. Your memory is bad.”

I wonder every day what it must be like to live in the past; to remember pretty much everything about your past. I watch Mom when she’s trying to remember. Her forehead gets all wrinkled and she tries so hard. You can just tell and then the frustration and the confusion overwhelm her. That’s the hardest part of this horrible disease. However for now, we embrace and love Mom in her journey with her dementia. We always take one day at a time.
Time for some reading to Mom of her favorite prayer (and mine too).

Dear Lord, laughter is your gift, today and every
day, put a smile on my face, and let me share
that smile with all who cross my path,
and let me just laugh, thank you Lord.
Love you Mom.

Looking at facilities

I knew this task of finding a good safe facility or nursing home was going to be difficult. However, we’ve found out the cost of facilities that have memory care are very expensive. So as Mom’s caregiver this is a huge challenge and a very important step in dealing with mom’s disease.

I’m also learning what’s store for me and what I’m facing in finding a suitable facility. Our priority, as Mom’s family, is her care and her safety. It is something that we’ve been doing 24 hours a day; making sure she is safe, avoiding further wandering, and making sure her personal needs are met.

At times I feel very discouraged. I feel angry at mom’s disease; never at mom. However as her caregiver and her daughter, I will always put her priorities first. I need to remember also to let go of the guilt. I’ve done everything and now the time has come that she needs to be placed in a care home. So the decision of securing a good nursing home is on the table for discussion and the rest of the family is in agreement. Thank God, we all feel the same. We need to remember, over and over again, we have not failed in Mom’s care it means we do whatever it takes to stay in the game.

So for now everything else is placed on hold and we’ve started making phone calls again, taking tours and saying lots of prayers. We love you Mom.

Challenges

We love our sweet Mom, but right now life with Mom is pretty rough for all of us. Every day as her daughter and caregiver, I noticed she gets more and more confused. However, and I’ve said this a million times, I’m going to make mom’s life as calm, pleasant and safe as I possibly can. Also, reminding myself to take it one day at a time.

Mom is also shutting down at being socialable. She prefers staying close to home and close to her family only. So life with Mom right now is doing what she wants and what makes her happy and most of all peaceful. We are going to make sure of that for the rest of her life here on earth.

Today’s prayer of the day is mom’s favorite.
Lord, you have a plan for my life that is grander
than I can imagine. Let your purposes be my
purposes. Let your will be my will. When I am
confused, give me clarity. When I am frightened,
give me courage. Let me be your faithful
servant, always seeking your guidance for
my life. And, let me always be a shining
beacon for your son today and every day
that I live. Amen.

I love you Mom.

Nursing home dilemma

It’s getting to the point that maybe the time is getting closer to start planning to place mom in an assisted living or a nursing home. Which one? It is a huge and very important decision to make. Probably the most important thing we must do as Mom’s family.

However the question keeps coming up: Is mom ready for the move? How will she take it? Will she even go? The guilt is horrendous, with all of us.

There are so many questions: Which facility do we place her in or which nursing home? And which one is the best? Of course, we are going to find something wrong with most of them so I started writing down questions. We are also getting the rest of the family involved. We asked our family doctor and friends that are nurses for their advice. They all helped a lot, but it comes down to making appointments with these facilities and taking tours.

I started by first making a list of questions to ask the director of admissions. My siblings will have questions also. The questions that have come up include:
1.    Is there a family council for the use of the resident?
2.    Does each shift have enough nursing help to take care of the residents?
3.    Do they enjoy their work?
4.    How much training does the staff have with memory problems?
5.    How long has the current administrator been at this facility?
6.    Has the facility recently had a change in ownership or management?
7.    How often are residents who need help assisting with toileting or having their briefs changed?
8.    Can they give us an example of how special care is given to residents with dementia?
9.    What happens if someone has a complaint or problem?
10.    Is attention given to residents at night if they wake up?
11.    How safe will mom be in any of these facilities?
12.    Who handles resident concerns?

These are all good question. Now where do we place her? And how long will the guilt stay us? We love you Mom very much.

Mom’s agitation

Mom has been acting more agitated lately. Mainly since she fell and more so since she started wandering. Also a couple of doctor’s visits have really added more confusion. We are hoping for no more falls and wandering.

We make sure she uses her walker and very important, that the top locks on all her doors are secured. However having said this, this disease is still so unpredictable. So for today, we planned a short walk, lots of good food, some laughs and good reading time. Also, we may take a trip down “memory lane” looking at old photos.

Mom enjoys this kind of day. So do I. As I start to read, she smiles and says, “I like this one. It’s my favorite.”

Lord, I have so many questions, why this and
why that? I’m just like a curious child. I’ll
bend your ear when I finally get to heaven
and can ask them all. It occurs to me, though,
that by then none of them will matter. I will
be just so happy to have made it to the place
you’ve prepared for me, where cares and worries,
sickness and fear do not exist. Then all that is
unknown to me here will be known, and I will
have full understanding and wisdom as you promised.

This was a good day after all for Mom. She is sound asleep, as I look at her and thank God she has no idea; and that’s a good thing. I love you Mom.

Dementia

Common everyday dementia behaviors and dealing with it, is just that, common behaviors, and how we as caregivers deal with it?

Mom has no control over how she acts and, to my knowledge, a behavior is the way a person acts or responds to the people and things around them. So with mom, she can’t tell any one of us how she feels with words, only behavior.

Since mom’s dementia is progressing so rapidly, as her caregiver, I have to be prepared the best I can. Sometimes it’s easier than other days. There are certain behaviors that trigger Mom. For example, simple things she just can’t remember and putting words together. Her agitation is overwhelming. This again is very common with Mom.

I’ve also noticed that if she is having trouble recognizing certain people or places, she gets agitated very fast, and then confused. I try not to ask her to do more than she can. Also taking her to another place where it is quiet helps a lot. Staying calm with her is also helpful.
Another idea I had in the past that worked with Mom and kept her calm was to ask her if she would like to take a tub bath while I kept her company. She smiled and said, “I haven’t done that in years.”

It has worked again and again. I think I will put that idea on the top of my list. At this stage in Mom’s journey with her disease, I intend to try everything and anything that brings comfort and peace. I know for certain that staying calm, using a quiet tone of voice, and most of all remembering at all times, it’s not Mom, it’s the disease.

I love you Mom.

Family and caregiving

This was a very rough and stressful week with Mom. She is getting very agitated and her level of confusion has gone up.

My brother, who is also one of Mom’s caregivers, has been somewhat in denial about Mom’s dementia. I know he stresses out and looses his patience more often. Keeping him involved in family meetings seems to help. I’m also trying to get him to join a support group. I have been working on being more patient with him and encourage him to take good care of himself. I don’t want to get on him all the time, however I keep telling him that a stressed out, over-tired caregiver is not providing the type of care he or she is trying so hard to give.

I know this job of caregiving is very difficult for all of us. There is not a day that goes by that I don’t wish we had the old mom back with her memory intact, but even though mom has this awful disease it is not the end of the road for her or us. I told Steve we will all help and work together, and we have to keep a sense of humor. Having said all this, which sounds so easy, it is not. But we can still do it and still enjoy mom for the time she has on this earth. We must continue to work together and take it one day at a time.

Out to lunch

I took mom out to lunch today.  We went a little early to avoid the lunch crowd because the less confusion the more peaceful it is. It was nice. We ate out on the patio and enjoyed the beautiful day. Mom was very quiet, more then normal. I was concerned, but didn’t want to overwhelm her with questions just yet. After we ate I ordered dessert, and we sat for a bit longer. She didn’t eat very much and as much as mom loves sweets she barely nibbled at her favorite pie. As we were finishing, I slowly and casually asked mom how she was doing and if she enjoy her lunch. The reason for the quiet and little eating was because Mom was in her own dementia world. She couldn’t remember what she ate and there was no agitation on her part, just loss of memory. I’ve been beginning to get in tune to her disease. This lunch showed me the progression of Mom’s disease.