Graduation and Respite Stays

I haven't posted in a few weeks. Things have been hectic in our household.

Earlier this month, May 1st to be exact, I attended the official commencement ceremony for my Masters Degree. Yay!!!! We took grandma to a respite stay for the weekend. I tell you, Brookwood Retirement Community has become a strategic alliance. Unlike recent times past, we had no problems with Muddear's stay.

We returned home with the things we packed. The nurses and aides were there waiting when we arrived. She was checked in and I was able to leave within 30 minutes. Nevertheless, we had a great weekend getaway - at least as great as you can driving up to Marion, Indiana on Saturday, May 1st for graduation and returning on May 2nd. There were, however, several highlights of the event. Obviously the graduation signifying the end of that chapter in my life. Additionally, meeting up with "friends" that I only new online. Putting a name with the face was great! Finally, having dinner with my online friends and their families.

As always, I am thankful for respite stays that allow caregivers the opportunity to get away. If you are a caregiver, make sure you find out how you can take advantage of the benefits of a respite stay for your loved one.

Back Again

Obviously I am back from Vegas and The World Tea Expo. This post is just a little late... sorry for the delay.  I personally had a fantastic time at the Expo. My dear husband on the other hand, I fear did not enjoy himself quite as much. However, I appreciate the fact that he went purely for me.

While away, I was thankful that I did not receive any phone calls from Brookwood regarding Muddear. There have been other occasions when taken to respite that Muddear is not enthusiastic about having to stay and becomes difficult. This was not one of those times. However, when I arrived to pick Muddear up, I became concerned.

First, I noticed that Muddear was wearing the same thing I dropped her off in - quite disconcerting. When I checked her clothes, I noticed that four (4) of the five outfits I brought for her were folded exactly the same way as when I unpacked them. I was livid! How is it that Muddear had not been changed for several days? When I questioned the staff, they lied and said that they knew for a fact that she had been changed. Her clothes were folded because they had been laundered. Of course, I said... "That is is not true - how would your laundry department know to fold her clothes exactly the way I had folded them when I left? Impossible!" So I asked to speak to the aide who dressed her for the day - Tuesday. She had not worked with Muddear over the weekend, therefore she could only speak for that day. When asked why Muddear was dressed in dirty clothes, the aide explained... "When I asked Ms. Flossie what she wanted to wear, she said she wanted to wear the outfit she now has on."

"Did you know that she has Dementia and would not have known that you were asking her to put on dirty clothes?"

"No, I didn't know that."

Of course, I asked to speak to the unit nurse. Once in the room, she too initially fed me a lie - however, I quickly discovered that she was simply repeating the lie that had been told to her. When I again explained the problem AS WELL AS the soiled nightgowns and underwear I found on the closet floor she changed her tune and advised that she would investigate the matter. She immediately agreed, especially when I reiterated my understanding of their policy, that dirty clothes are to be separated from clean clothes. Especially when soiled as they represent an infectious disease hazard. While we (Mike and I) finished packing Muddear's belongings the Unit Nurse returned to say that Muddear had not been dressed because she wanted to stay in her nightgowns. (Okay no problem.) Unfortunately, that did not explain the soiled gowns and underwear lying on the closet floor or the fact that she was dressed in dirty clothes - to wit I was told the aides would be reprimanded via a formal write-up of their performance. Although, I find it sad that the aide's are always the one's to receive the only reprimand. What about the nurses that enter the room to give meds and check vitals? Did they not notice the nasty clothes on the floor?

Nevertheless, I received a letter of apology - also advising that Muddear had not been bathed properly either. But I'm still pissed. While this is truly the first bad experience I've had with Brookwood it still does not negate the fact that Muddear should have had better care.

Things that make you go hmmmm...

Respite, Vegas, and the World Tea Expo

I should be packing, instead I am creating a quick blog post. This weekend, I am attending the World Tea Expo in Las Vegas. Yeah, I'm sure I sound like a nerd, I really can't help it. I love tea and simply couldn't pass up the Expo.  It's amazing the things you can develop an interest in when your time outside of the house is limited. If you are interested in more details you can follow my adventures on Tea Escapade.

 

Needless to say, a trip out of town means a respite stay for Muddear. In some respects, respite stays are so much easier than before although I still have that twinge of guilt every time I leave Muddear. Thank goodness Brookwood Retirement Community makes the transition easy. They know us now so scheduling, drop off and pick up are a breeze.

Muddear was so funny. When I arrived home from work, I reminded her that we would be leaving soon. After packing and loading Muddear into the car, we start to talk... 

"Now where are you going?"

"Las Vegas."

"Sho'nuff?"

"Yep! I am really looking forward to the trip. I have never been to Vega before."

Upon arrival at Brookwood, I wait for Muddear to finish eating dinner - we stopped at Wendy's on the way. I kissed her on the head and told her I was leaving. 

"Well, why are you leaving me here?"

"Remember, Mike and I are going out of town."

"I know, but I thought I was going too."

"Not this time, but don't worry - we won't be gone long."

"I'll be praying for you... take my prayers with you."

"I will and I'll be praying for you too."

That's the first time Muddear ever questioned whether she was traveling with us or not. I wasn't sure if she was serious or joking. Who really knows?

Muddear Updates

I know, its been awhile since posting. Overall Muddear has been doing very well. In the last couple of months we did another respite stay. No complaints - we combined the stay to accommodate for my business trip to Texas which fell right before Mike's birthday weekend. We had a nice long weekend celebrating Mike without worrying about getting a granny-sitter; how long she could or could not stay; or how much we would have to pay. We had a whole day of snow tubing at Perfect North Slopes and dinner. It was a blast!

Because I was out of town, Mike dropped Muddear off at Brookwood Retirement Community without a hitch. Now I'm thinking he should do so more often, considering Muddear traumatizes me when I drop her off.  I had pick-up duty, which I was more than happy to do as it is usually the easy part of the respite stay experience for me.  As expected, Muddear was all smiles, albeit more than ready to come home.

That's all for now. I must do better keeping up with my posts.

Flossie, Respite, and The New York Times

A few months ago, I was interviewed by The New York Times writer John Leland about the use of respite care services for Flossie aka Muddear.

I didn't realize the article was already in print, otherwise, I would have shared it sooner. I have posted an excerpt of the article; however, if you follow the link you can read it in its entirety. Originally the article ran electronically on August 18, 2008 and in print on August 19, 2008.

For Families of the Ailing, A Brief Chance to Relax
By John Leland

MILWAUKEE — Mildred and John Fischer thought their retirement years would be a time for traveling and visiting their grandchildren. Then last September, just as Mr. Fischer was retiring as a postal carrier, Mrs. Fischer’s mother, who has Alzheimer’s disease, came to live with them.

While friends and neighbors enjoyed carefree time, Mrs. Fischer said she felt that her world was closing in on her. She could sense her heart palpitating from the constant stress. It got so bad one day, she said, “I needed to go down to the basement and just sit.”

I send many thanks to John for shedding a light on the impact Alzheimer's Disease and other dementing disorders have on caregivers. As the U.S. population continues to age, many more men and women will be faced with the challenging question... "How do I care for my mother/father/ husband/ wife with Alzheimer's Disease (dementia)?" 

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.

Vacation and Respite

It is not common for me to be delinquent in my posting, but I have been on vacation. At least that excuse is better than "the dog ate it".

Anyway... whenever I take Muddear for a respite stay it is probably more traumatic for me than it is for her. I always worry about how being taken to a nursing home, even temporarily, makes her feel.  I hate to admit it, but this time around I wasn't the least bit worried. During the last couple of months I have been under a great deal of stress - family pressures... school... work. None of which include being a caregiver. I was desperate for vacation. 

Thus, on the morning of Friday, June 28 Mike and I hit the road for Mississippi to my sister's wedding. No responsibilities but us - not only did we leave Muddear safely at Brookwood Retirement Community, we left the kids at home as well. Did we go anywhere exotic? Nope - but we had the greatest time together. From the wedding in a scary little Mississippi town, to caving in Chattanooga, to riding rollercoasters at our local amusement park - I never realized how much I missed spending time with my husband.

Obviously, we're back and the vacation is over. I have promised myself to find more opportunities for us to spend one-on-one time together.

Lab Results

I finally heard from the nurse who collected the urine sample last week. The lab results stated that Muddear does not have an infection of any sort. No Urinary Tract Infections, bladder infections, nothing.

Even though this is what the nurse initially suspected, I am glad to have the actual proof. The news was welcomed with a little apprehension. While I am glad Muddear is not suffering from an infection, the results simply mean that her Dementia is getting progressively worse. When I picked Muddear up on Monday from Brookwood Retirement Community, I could tell that I was the only one refreshed after the respite stay. Muddear still remained in that "special" place in her mind that did not quite connect with the reality of today.

I can only guess that mentally Muddear is living in a time period that occurred almost 80 years ago. She constantly talks about her grandmother, taking care of her grandmother, etc. Then I am stuck with the dilemma... do I remind her that her grandmother died years ago? Is this going to make things worse for Muddear? Will her confusion increase? Will the news come as a great shock? Thus far, I have opted with the truth - but first I remind Muddear of her present age, then gently ask her if her grandmother would be living if she in fact is 96? Typically this works for the short term until Muddear forgets again. However, there have been a couple of occasions where Muddear's first reaction is shock, then denial.

Nevertheless, it is odd to see the two dispensations of time co-exist in Muddear's mind. While she lives, mentally, in the past Muddear is simultaneously aware of more current events. How confusing it all must be for her. I will keep you posted.

Respite Care

Thursday night we took Muddear to respite stay - not a completely unusual occurrence. However, what made this stay somewhat different was Muddear's confusion.

After packing up Muddear, Mariah and I drove her over to Brookwood Retirement Community. Initially, everything went well. Muddear immediately recognized Brookwood and easily allowed us to wheel her into the facility. Once we located Muddear's room, one of the aide's brought her milk and cookies - a definite favorite!

It took a little longer than usual to get Muddear checked in - but that was not a problem. It gave us more time to make sure she was comfortable. The problem began when Mariah and I stood up to leave. Muddear said, "Are you leaving tonight?"

"Yes, Muddear. We have to go now."
"Oh no! You confused me, I didn't know you were leaving tonight."
"Yes, it is time for us to go, but we will come back to pick you up in a few days."

The supervising nurse began to talk to Muddear to distract her so we could leave and they could prepare her for bed. That was when the drama began. While Mariah and I were walking down the hall we could hear Muddear SCREAMING in the background...

"No, no no! This ain't right! I can't stay here! I'm supposed to take care of my grandmother! I am the only person that takes care of her!"

Both Mariah and I felt really awful for leaving her. I had never experienced Muddear acting this way to a respite stay. But I had to remind myself that she is in a safe place and Dementia is the culprit.

Nevertheless, today is pick up day - I'll let you know how it goes.

Resolution

After several phone calls we were able to resolve the urine specimen dilemma. The delinquent nurse picked up the specimen and dropped it off to the lab.

The preliminary review showed no signs of UTI or other infection. However, a culture was requested from the lab to verify. The lab results are expected by Friday. In the meantime, Dr. Tabrizi came today to perform Muddear's monthly physical.

The doctor's initial opinion ... Muddear's dementia is progressing. We will need to discuss some alternative treatments once the urine sample/culture results are received. In the meantime, we will have a 4 day 3 night reprieve. Muddear's respite stay at Brookwood Retirement Community began tonight. This last month has been overwhelming - I truly appreciate not being a caregiver this weekend. Both my family and I need some time together.

Home Sweet...Home?

All I can say is, "bless her heart!" Last week, after picking Muddear up from her respite stay I wrote post titled, "Home Sweet Home". Those sentiments lasted for about 12 hours and Grandma Dynamite was back in full force, extremely confused and ready to move in search for her family. While respite stays are greatly needed they in turn tend to be the catalyst for confusion. Simply because it is difficult for people with dementia to handle such significant changes.

Ironically, I think the most consistent topic for debate centers around "who are you?" and "where are we?" The irony, in my mind, stems from the fact that Muddear could not wait to return home. When we pulled up in the driveway she exclaimed, "Home at last!" Nevertheless, I'm sure by now you know that we have attempted as best as possible to clear up the confusion, but I must admit sometimes its bizarre having the same heated discussion over and over... and over and over... and over and over... again. Its like being in a Seinfeld episode.

One of the conversations that stand out in my mind...

"You know that place I went to? I'm not going back there for that lady again."
"Muddear when you were at Brookwood, you went for me. I had to go to a funeral, remember?"
"No, I'm not talking about you. I'm talking about that other lady. I'm not going for her."
"Muddear, there is no other lady. You went there for me, so I could go to the funeral."
"Well that's what I'm saying, I'll go for you but not for her. Why did I go for her?"
"You didn't go for anyone but me. I had a funeral remember?"
"Oh, I went for you?"
"Yes, Muddear. I had to go out of town for a funeral."
"Oh, I thought I went for her. Well, I'll go for you."

(I'm shaking my head to clear up my own confusion!)

October Respite Stay

Here are a few pictures from Muddear's respite stay at Brookwood Retirement Community in October 2007.

Home Sweet Home

Granny is back! Albeit a little confused but home nonetheless. Mike and I picked Muddear up from Brookwood last night after Little Mike's basketball game. Several times she asked...

"I live with my grandmother right?" When we said "no", she followed that question with, "Well, who do I stay with?" I was a little worried that we might be in for a long night, thank the good Lord that was not the case.

It's funny to see Muddear waiting and ready to go. She actually became a little anxious, especially when we are unable to leave immediately upon arrival. For example, last night, even though I called to notify the nursing staff that we were on our way they had not begun to get Muddear's prescriptions ready or clothes packed. Not a problem for me, sometimes it happens, but Muddear was simply beside herself.

"Well, what's wrong?" she asked.
"Why is it taking so long?"
"What are they doing?"
"Why can't we leave?"

Over and over Muddear inquired until we were officially walking out of the door and she was tucked safely in the car. It was nice to know that she was looking forward to returning home.

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!

One Mistake After Another

First things first, Mike and I took Muddear to Brookwood this evening to begin her respite stay. I tried really hard not to feel guilty - even though I do everytime. Nevertheless, the drop off went smoothly except one little glitch...

Based upon past experiences, I requested to review the medication list faxed to Brookwood by Muddear's doctor. I really don't understand how or why this happens, but the medication list was wrong again. Am I complaining? No just amazed that the "official" list of medications from the Doctor's office was wrong...again. To make matters worse, this is not the first time. Every time I request a medication list from Muddear's doctor for a respite stay it is wrong.

How is this possible? It actually makes me a little nervous - since when am I supposed to check and re-check on the doctor to make sure their list of medications is correct?

Questions

This evening, as I prepared for Muddear's upcoming respite stay, I thought about our visit with Phil at the nursing home. During the entire visit, we were sitting in the dining area socializing. Prior to leaving I needed to meet with the nursing home social worker, Rose, to discuss how Phil was doing.

On this day in particular, GlenCare was having a fall festival which kept Rose running all over the nursing home and required me to have her paged over the intercom. I said to Muddear, Julia, and Phil..."I'll be right back. I have to find Rose." You should have seen how quickly Muddear reacted.

"You are going to come back, aren't you?"

"Yes, of course, Muddear I will be back. I just have to find Rose, but I will be right back."

Muddear will be at Brookwood again for respite from Thursday night to Tuesday. As I prepared for this stay, I began to wonder if she worries about whether I will come back to pick her up.

Note to self...Reassure Muddear that she is not going to be a permanent Brookwood resident. I will most certainly be back.

We're Back

We are officially "back" and have picked Muddear up from her respite stay. Kudos to Brookwood Retirement Community. As always they did a fantastic job with Muddear. I am never afraid to leave her there when necessary. I am not burdened by incessant phone calls that cause me great anxiety whenever I see the nursing home number for fear that something has gone terribly wrong. She was clean, well fed, and happy - what more could I ask for?

Muddear was dressed and ready to go when I arrived. She was very talkative and discussed at length the great time she had while at Brookwood.


"I had a good time, but I can't wait to go home. There's no place like home."
"I am glad that you enjoyed your stay."
"Yes, yes and I am tired. I want to go home and get some rest. I have been so busy while I was here."
"Really? What did you do?"
"All day I was wheeling back and forth, up and down the hall. We had lunch in this room and dinner in that room. All that travelling just about wore me out!"


I sat back and thought to myself, Muddear is simply adorable!

A Weekend Getaway - Respite Again

It's respite time again...Mike and I are going on a weekend rendezvous! That means Muddear must go back to Brookwood Retirement Community for another respite stay.

I don't feel guilty this time. Perhaps because she will only be there for three nights, I really don't know. Nevertheless, today is my day to leave work early to relieve Sharon (the aide), so instead I plan to go home and prepare Muddear for her respite stay. This time I even told Muddear in advance; once last week and a true reminder last night. Perhaps another reason why I am not burdened by extreme guilt.

Packing is always a joy, okay I am just kidding, but I laugh at myself every time. I always pack Muddear entirely too many outfits, too many gowns, too many of everything. I then type a list detailing everything I have packed to ensure she returns from the respite stay with everything I packed. Speaking of gowns, I have included pictures of the new "sexy" gowns purchased in preparation for Muddear's last respite stay.

Pamela's Venting Session

After work last Friday, May 25, Pamela visited Flossie at Brookwood (see Support Systems and Another Respite Stay ). I found her account of the visit quite humorous. I have summarized it below:

According to Pamela...

"I was actually a little nervous when I went to see your grandmother, because for the life of me, I could not remember her actual name! I always say 'your grandmother' or 'Muddear' and all I kept thinking was 'they are not going to let me in to see her.' However, at the last minute, I had a moment of clarity and blurted out...'I'm here to see Flossie Dawson.'

Now first, let me put your mind at ease. Your grandmother was clean and had on a fresh change of clothes. I know you were worried about that, but she looked good. When I entered her room, Muddear was looking out the window - I mentioned the nice view to her. But then, I don't know what happened.

I began to tell Muddear all about my woes with Sofa Express. I told her about how I ordered the new entertainment center and their failure to deliver it as expected. I went on to tell her about how I had received three different entertainment centers all with various degrees of damage. I even explained how I had called numerous employees from the sales rep to the district manager with no real satisfaction or adequate compensation and that I just did not know what I was going to do next. Would you believe I even told her that I notified John Matarese from the news. And there sat your grandmother, listening attentively, shaking her head like she understood and before you know it, she was offering me advice.

Muddear said, "Honey, you got to do what you got to do! I remember when I was married to my husband and he had bad credit. I took over the money and did what I had to do!"

Nikki, you know me, I was shaking my head and agreeing and I heard myself saying 'that's right Muddear; you've got to do what you've got to do!' In that moment I sat back and chuckled as I thought to myself...'why am I venting to Muddear? She won't remember tomorrow."

Although I have to admit, when I left I felt better.

Back to Reality

Today Mike and I picked Muddear up from her respite stay - Brookwood Retirement Community is the best! This stay was wonderful. First, I did not receive phone calls every day as I have during past respite stays so I was able to vacation without worrying incessantly. Second, when I arrived at Brookwood Muddear was happy and full of smiles. She had on fresh clothes and she smelled clean. I never take even the simplest things from granted after previous respite experiences. Finally, I could tell that they were faithful in taking care of the skin disorder Muddear currently suffers from. I would recommend them to anyone in need of a respite care facility. I appreciate the care the staff provided my grandmother.

I am very thankful that prior to leaving for vacation my worrying was for naught. Praise be to God! :-)

Stay tuned for upcoming posts - Pamela and Julia have great stories about their visits with Muddear while I was away. Thanks again to both of them!