A Caregiver Offers Advice

For the past three years my husband and I have been caregivers for my grandmother, Flossie. Therefore, I believe that I am somewhat qualified to give advice to other caregivers. While this is unsolicited advice, I felt compelled to share some thoughts from my heart with other caregivers who may visit Dementia Thoughts accidentally or on purpose. My recent vacation gave me the opportunity to conduct a little introspection. It is my opinion that there are two key tips to successful caregiving:

1. Developing a strong support system; and 

2. Never failing to take care of self.

My husband and I find ourselves in a somewhat unique situation. We are grandchildren caring for the elderly not the actual children. Sadly, there are no children remaining within my grandmothers lineage able to care for her. Not only are there no able-bodied children, there are no other grandchildren able to provide assistance either. While your situation may not be exactly like ours, you may find that other family members are not as eager or willing to take on the roll as caregiver, thus leaving you as sole caregiver.

To develop our support system, we have reached out to many sources or have been contacted by several unlikely sources to provide assistance. Whenever someone opens this door on your behalf don't be afraid to accept a trusted helping hand. Our support system is comprised of respite care, certified nurse assistants, friends, and extended family members with no relation to my grandmother. Even my grandmother's social worker has unknowingly provided that extra push we needed. 

If you already tapped into friends and family, but find that is not enough, there are many options available to those who care for the elderly. The Council on Aging is one option. If your loved one suffers from any of the Dementing disorders, including but not limited to Alzheimer's, contact the Alzheimer's Association. For more options visit any of the links contained in the side-bar under "Resource Links".

My second tip centers around caring for self. Caregiving for another is often a thankless responsibility. Not to mention it is often stressful when trying to not only meet but anticipate the needs of another. Especially when the recipient of care is unable to verbalize their needs, or in the case of my grandmother, frequently forgets that assistance is needed and does not want it. In addition to the stress, caregiving is demanding. The demands manifest in many forms, from time constraints, to mental demands, to physical demands.  Caring for Flossie is a 24 hour job - she can not be left alone. My grandmother cannot prepare her own meals, transfer easily to the restroom, remember to take her medication, or dress with ease. She cannot bathe herself and struggles with the ability to logically make good decisions on her behalf. Some say, its like having a newborn... most would disagree. There is an adult hidden in the bundle of needs.

So when do you find time to care for yourself? I often felt guilty when I only wanted to spend time doing things unrelated to my grandmother. It is a daily battle to curb the guilt, yet it is imperative for my own mental sanity. As a caregiver, you must take care of you. Find an activity that you can do alone to replenish self. Purposely plan time with your spouse to encourage continued growth and connection as a couple. Take individual time with your children so that they are never lost in the midst of caregiving. Being a caregiver should be classified as one of the many roles you play as an adult NOT define who you are. Just as wife and mother or accountant and husband are not who you are but a part of what you do.

I recommend that caregivers begin by creating a calendar that documents every activity or responsibility. Then find opportunities to the calendar activities unrelated to the person you care for. Whether conducted in the home or out of the home carve out time for you and your family. This is where your support system will play an active role. Perhaps a niece or nephew, sister, or friend can come over for a few hours so you can go out to dinner. Sometimes my husband and I have someone come over to the house and we go into the family room and watch movies for hours without interruption. Sometimes I sit in my grandmother's room with her and read a book at night - she is comforted by my presence while I can drift off to exotic locations in my imagination.

However you achieve this feat... always take time to care for self and expend the effort to build a support system. If you are spent emotionally, physically, spiritually, and mentally you have nothing to give to the person you care for and even worse for your family.  I challenge you to start today.

Mother's Day 2008

We had a really good Mother's Day this year. Early afternoon, Mike and I took Muddear to spend some time with Philip at the nursing home. He seemed ecstatic, as usual, to see Muddear. I am always moved by the affection shared between them. I was embarrassed that it had been so long since our last visit. Where did the time go? We had not visited Phil since February.

Later in the afternoon, I took Muddear and my mother out to dinner at a new Asian and Sushi restaurant called Apsara. This restaurant was definitely outside of Muddear's comfort zone, but the fact that we were surrounded by family more than made up for the fact...I think! Included in our party were my brother - Tommy, sister - Lisa, stepfather - Don, and nephew - Isaiah. We shared a wonderful afternoon filled with great food, laughter, and love. Of all days, I forgot my camera, so I do not have pictures to share. Bummer!

Of course, leave it to Muddear to "make a funny"! After we passed out Mother's Day Cards, I could tell Muddear was slightly out of sorts about where to put her card.  

"Muddear, would you like for me to put your card in my purse so you don't have to hold it?"

"No. Since we live in different places, I need to keep it so I don't forget it."

"Muddear, you know, you live with me. So, if I put your card in my purse I will give it to you when we get home."

"Oh, okay! Put it in your purse. I'll get it later."

Happy Mother's Day! 

Quality Time

Last night Mike and I were able to get out of the house again to spend time together. Yayyyyy!!! Honestly, we do not do this enough, but have tried to commit to enjoying quality husband and wife time together once a week. You know - out of the house, no kids, no grandma - just us.

It is amazing how easy it is to take quality time for granted. Yes, I know I say this all the time, but I cannot resist repeating myself. Being a full time caregiver requires a huge sacrifice of time. One of the things I miss the most is the time spent with my husband.

Last night was reminiscent of our pre-caregiver days. We had dinner with another couple and then went out dancing. The only difference...I was more in shape then. After dancing to a few fast songs I found myself out of breath with burning thighs! This once aerobic instructor and dancer has fallen apart! Next week, I start a new exercise regiment. At some point between work, school, and family - this girl will be hitting the treadmill.

Realization hit me...not only do I not spend enough quality time with my husband, I don't spend enough time taking care of me! Perhaps it is time to rethink about my priorities...

More Easter Sunday Pictures

The post would not be complete without pictures of the rest of the family. By the way, did you notice that Muddear is not wearing a wig or bonnet? She NEVER leaves the house without one or the other. It was great to see her beautiful face. Enjoy!

Easter Sunday

What a great day of celebration - to acknowledge the resurrection of our Lord and Savior Jesus Christ!

We decided as a family to go out to dinner. Additionally, the kids had to research a scripture about Easter aka Resurrection Sunday to discuss over dinner. We all had a GREAT time - even Muddear. I assume that Muddear's daily confinement to the house is what makes our monthly excursions so enjoyable. This month we had three if you include our Easter dinner at Cracker Barrel.

Cracker Barrel is not a restaurant where we dine often. However, its "triple threat quality" makes Cracker Barrel a success every time.

1. A wide selection of home cooked meals;
2. Large portions; and
3. Economically priced.

Who could ask for more? Oh yeah - the kids love it and Muddear does too after this first dining experience. I was amazed by the amount of food she ate - which further confirms my theory that Muddear hates my cooking! It's okay, as Muddear says..."not everybody loves everything."

Muddear had dinner, dessert, and hot chocolate! I could not have asked for a better day -not to mention the brief reprieve from Muddear's Dementia induced insanity!

Loss of Recognition

During the last week it has become evident that Muddear has no idea who I am. Ironically, she remembers Mike, but me? I might as well be a complete stranger walking down the street.

I used to be able to provide Muddear with clues that would jog her memory. The realization that I was her granddaughter was always accompanied by the biggest smile and show of affection. "Come give Muddear a hug! Who woulda ever thought, I'd be living with my granddaugther?"

Now my clues are met with blank stares. It is truly sad.

Funerals and Respite Stays

My great uncle, S.C., died earlier this week. He lived in St. Louis, Missouri where the bulk of our extended family live, therefore a few us are driving there for the funeral.

Please keep us in your thoughts and prayers as we leave Sunday morning for the evening visitation at the church. The funeral and burial will be held on Monday at Noon.

While gone, Muddear will stay at Brookwood Retirement Community for a short respite stay. We just dropped her off this afternoon. It was nice to have the staff express excitement about having Muddear return to stay with them. Almost like home away from home.

One thing about Brookwood is that there is a store on site that sells all sorts of snacks as well as miscellaneous items, from light bulbs to socks to miniature porcelain tea sets. Prior to Mike and I leaving her, Muddear asked..."did you hide any snacks in my drawer?"

Of course I did!

Christmas Day

Every year, we spend Christmas Eve with Mike's family and Christmas Day with my family. So on Christmas day, I bathed Muddear, again dressed her in "going out" clothes...wig and glasses included and we headed to my mother's house. Upon arrival, Muddear was greeted by my family and thus began the festivities.

We had dinner, traditional cold-weather holiday food - turkey, dressing, macaroni and cheese, sweet potato casserole, etc. and Muddear ate and ate. This is always a plus as you know what a picky eater Muddear can be. At one point, Muddear expressed that she was cold and I placed a blanket over her lap, which seemed to satisfy her need for additional layers. I became a little worried when several times throughout our visit Muddear asked..."when are we going home?" While not a good sign, I remained optimistic. Thankfully, Muddear did not throw a fit as she has done in the past and we were able to have another joyous family-filled Christmas Day.

We arrived around 2:45 and returned home by 10:30 - a great time was had by all, or so I thought. The next day, when talking to Sharon about her Christmas (you know Sharon works every holiday, but Christmas) she told me about her conversation with Muddear. According to Muddear, we took her to a house with NO heat and forced her to stay there and freeze! To wit, she was not happy about it. Sharon said she tried to explain to Muddear that we would never take her somewhere with NO heat, but Muddear would not hear it! Even going so far as to say..."you don't know how they treat me when you are not around!"

Later that day, when Sharon was about to leave, I went into Muddear's room to ask Muddear how she was doing. Muddear's response...

"I made it through Christmas!"

Christmas Eve

Christmas is always a wonderful time of year. I enjoy the time spent with family immensely. On Christmas Eve, we packed Muddear up in her "going out"clothes, put her wig on and drove over to Mike's mother's house. For Christmas Eve, we always have a theme dinner - this year was Mexican. I was a little nervous about what Muddear would eat, because she is a very picky eater especially when she is not familiar with the entree. Fortunately, she ate like a pig with no complaints. We "draw names" for the gift exchange, but always make sure something is given to Muddear and the kids.

Muddear was so cute! Upon receipt of her gift, she just sat there holding it. After about 5 minutes, I asked if she need help opening her gift. Muddear looked at me and said, "No." Another 5 minutes went by and still Muddear had not opened her gift.

"Muddear?" Why haven't you opened your gift?
"What, this?"
"Yes."
"Is it for me?"
"Yes."
"Oh, I thought they told me to hold it."

Muddear is so funny! I can only assume that with all of the commotion, of gifts being passed around and opened as well as all of the "oohs" and "aahs" Muddear did not clearly hear that the gift was hers. Thank goodness, she loved her gift...a pair of black suede ankle boots!

Overall, I think Muddear had a wonderful time. I know we did!

Thanksgiving

There are many things I am thankful for...my family and friends; that the Lord has provided food, clothing, and shelter; health and healing both emotionally and physically; and the aides that faithfully care for Muddear.

Walter, Muddear's other son and my father, was rushed to the hospital a few days prior to Thanksgiving. Wednesday night, I spent time at the hospital and received several calls Wednesday night through early Thursday morning about his status. Therefore, it was a blessing to be able to sleep in on Thanksgiving morning knowing that Sharon, the aide would arrive bright and early to care for Flossie before we left for dinner. Between the family, work, and the hospital I was exhausted. (In time, Walter is going to be okay.)

It was nice to only have to worry about getting myself ready to leave on Thanksgiving day knowing that Sharon was taking care of Muddear. We packed Muddear up and left the house about 2:30 p.m. First stop...Glencare Nursing Home to visit with Phil. Muddear was so excited when I told her. She asked if we would stop by the store on our way so that she could purchase a candy bar to give to Philip. Very Cute!

Upon arrival at the nursing home, as usual, they were ecstatic to see one another. Hugs and kisses were shared and then Muddear's usual request for Phil to "stand up so I can see how tall you are." Philip, as usual, forgets to put the brakes on his wheelchair and we are yelling, "No Phil, don't stand up without your brakes!" About mid-way through the visit, Muddear pulls out the coveted candy bar (3 Musketeers) and gives it Phil - you should have seen his face! He was so excited to receive the candy bar.

I must continue the monthly visits, I think it does wonders for both Muddear and Phil. The funny thing is Muddear only stays about 30 minutes to an hour. Phil inevitably needs a smoke break and I think Muddear takes that as her queue to leave. The two of them may be in the middle of a conversation, holding hands and giggling, when suddenly Phil says..."Okay. Bye Bye. Thank you" and wheels himself away for a smoke break. Phil and cigarettes are like two powerful magnates.

After leaving the nursing home, the three of us headed for Mike's mom's house for dinner with the family. My side of the family was divided up between Mississippi, Indiana, and Ohio this year. While I missed my family, I think only having one place to visit made things a little easier on Muddear. She was very easy to get along with - all evening Muddear talked and laughed with the family. We managed to only have one anxiety attack which occurred when dinner was served. What is the correlation between dinner and anxiety attacks? Fortunately, Muddear "managed" to overcome it and ate a substantial dinner topped off with a piece of the chocolate cake I made for the occasion.

We probably arrived home around 10:00 p.m. Muddear was exhausted! I helped her change into a clean gown, dispensed final medications, and in the bed went Muddear. It was a great day for which I am thankful!

Muddear and Phil

The Power of Family

After lunch on Sunday at TGI Friday's we headed for Glencare Nursing Home to visit Muddear's oldest son Phil. Muddear was really excited about seeing him, I had not taken her for a visit since early Spring.

As soon as we exited the elevator on Phil's floor we saw Philip. He was sitting in his wheelchair right outside the elevator waiting to go on a smoke break! Initially, he did not see Muddear as we exited the elevator. Enthusiastically, I waved saying "Hi Philip!" He was full of smiles yet lacked the recognition of who I was. But my next words were like music to his ears...

"Philip, do you see you mother? Do you see Muddear right here?"

Phillips eyes lit up with recognition and immediately he began to reach for Muddear. It was like witnessing the prodigal son (or mother in this case) come home! We could separate them!

The staff recommended sitting in the dining area so we could talk and visit for a while. Muddear was simply glowing. I on the other hand felt a little saddened. Muddear only has two remaining relatives that we are aware of and I was not doing a good job of making sure that she spent time with him on a consistent basis. I made a promise to myself that I would make sure she was able to see Phil at least once a month.

It was so obvious that Muddear missed her son and Phil missed his mother. During the entire visit they held hands and touched while "oohing and aahhing" over one another. I needed to make this happen more often. And Muddear was so cute...the excitement of it all caused her to become short of breath and every 10 minutes she would say to Phil...

"Stand up and let me see how tall you are." or "Stand up and let me see how much weight you have gained."

Muddear was ready to leave within the hour. At the elevators, Muddear promised to be back while Phil waved and smiled. Julia and both caught the sadness in his eyes as he rounded the corner to return to either his room or the television area.

Who Are You?

Today was one of those days when Muddear openly admitted not knowing me. I am sure it happens more often than I would like, but today must have been a confusion filled day for her. While sitting in Muddear's room this evening, she looked me directly in the eye and said:

"Do you talk to Pat Porter often?"
"All the time, she is my mother."
"She is? Well what is your name?"
"Nikki."
"Are you Pat's first born Nikki or are you another Nikki?"
"I am her first born and only Nikki."
"Well isn't there another Nikki?"
"No. I am the only Nikki."
"Well, who is the other one I call Nikki?"
"Muddear that would be me."
"Oh, well when you get to be almost 100 years old, it's hard to remember everything."

I guess I shouldn't be alarmed. This is just the beginning of many more days to come. The affects of Dementia/Alzheimer's are unbelievable.

Painful Conversations

I am a stepmother of two and sacrifice regularly as any parent should for the well being of my stepchildren. I am not looking for a pat on the back, just stating the reality of the situation. No, I am not their birth mother, however, I love them and cannot imagine my life without them. In addition, I deeply desire to give birth to children as well. At 35, I realize life has altered the timing of this event, yet I stand firm in my faith. I explained all of this to set the stage for this post.

A couple of weeks ago, Muddear and I had a conversation that really disturbed me. It was not the first time. At least once a month Muddear likes to remind me that I don't have children or she likes to play down the level of responsibility I have as stepmother. In my heart, I know she does not mean any harm, but it is still painful for me. If I am honest with myself, I know the problem is mine. Yet, just once I wish that I could tell Muddear how her words really make me feel. But how do you reason with someone with Dementia? You don't.

And so the conversation goes:

"Hey Muddear!"
"Hi baby! Are you just getting home from work?"
"Yes, I am. It has been a long day and I am glad to be home."
"Are you tired?"
"Today I am. I just wanted to say hi! I'll be back, I have to change clothes."
"That's too bad, but it wouldn't be a days work if you didn't work hard and come home tired. Do you have to cook dinner?"
"Yep, I'll rustle up some dinner after I change clothes."
"You seem just like me. Go to work during the day and come home to cook dinner. At least you don't have kids."
"I have Mike and Mariah."
"Maybe so, but they ain't your kids. You didn't have them so you don't live with them or worry about them."
"Muddear, the kids are here practically everyday and yes, I do worry about them."
"That may be so, but you don't worry like a real mother who had them and think about them all the time. Like I did my own kids. You know what I mean."

Generations of Family

Yesterday I went to the funeral of Hattie Tolble. I came to know Mrs. Tolble through her daughter and son-in-law with whom she lived for the last 10 years. The closeness of their family unit never ceased to amaze me and I always considered it a blessing to see three generations living together - the young giving energy and strength to the elder and the elder imparting wisdom to the younger.

Today there are millions of senior citizens living in nursing homes and retirement communities. Oftentimes with no visits from family or friends. During Muddear's lucid moments, I hope that this time with us is a blessing to her. That she too is able to receive strength and hope. But in turn, I pray that we are setting an example for our children as well. It is my desire that each of our children learn the importance of family and as we grow older and less independent that they would become the support system we need in later years.