Another Year Another Blood Transfusion

About three weeks ago, after Muddear's respite stay at Brookwood Retirement Community, it was time for a doctor's appointment. Thank goodness! I was worried that she was coming down with another upper respiratory infection - Muddear had been complaining of a severe sore throat and coughing.

We utilize visiting physicians - what a blessing to have doctor's come to your home instead of the cumbersome job of transporting a wheelchair bound person from home to doctor and back again. The doctor - Dr. Amin - ordered chest x-rays, which thankfully came back negative. Additionally, I requested blood work, because it had been a few months since Muddear had blood tests. This is critical due to the sheer number of medications she has been prescribed. Surprisingly, Muddear's hemoglobin levels came back extremely low. As you know, Muddear is normally anemic, nevertheless I was quite surprised when the doctor advised that I should take Muddear to the hospital for a possible blood transfusion. Surprised, but not alarmed - we went through this same "exercise" in March of 2009.

Typically, we take Muddear to Mercy Hospital - this time was no different. Let me take a moment to say kudos to Mercy's new ER check-in process. Within 30 minutes Muddear had a room and had been seen by an aide, her nurse, and the doctor! Never before have I received such speedy and attentive service in the emergency room. Kind of like an episode from Gray's Anatomy!

So fast forwarding this account...

Muddear did in fact receive a blood transfusion. For those of you with small veins, be advised that if a small IV needle is used for your IV it is not large enough to accommodate a blood transfusion. A PICC Line (pictured in the beginning of the post), by definition and per its acronym, a peripherally inserted central catheter. It is long, slender, small, flexible tube that is inserted into a peripheral vein, typically in the upper arm, and advanced until the catheter tip terminates in a large vein in the chest near the heart to obtain intravenous access. It is similar to other central lines as it terminates into a large vessel near the heart. However, unlike other central lines, its point of entry is from the periphery of the body the extremities. And typicallythe upper arm is the area of choice. (This information was pulled from the website, PICC Line Nursing: http://picclinenursing.com/.

Once inserted an x-ray must be conducted to confirm accurate placement - see picture to the right. I was once again surprised - this time to discover from the x-rays - that Muddear now had pneumonia. That is, however, a story for another day. With the PICC Line in position, Muddear was ready to receive her two units of blood. The procedure went incredibly well and Muddear was subsequently treated for pneumonia and later discharged, but not without some drama. That will be the subject of another post.

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...

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)?" 

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.

Breaking the News

Sunday, after Muddear's return from the respite stay at Brookwood Retirement Community, I told her that Walter passed.

I quietly sat beside Muddear's bed, lowered my voice, and delivered the news while holding her hand. I truly expected histrionics. However, Muddear's response left me shocked and awed because her reaction was the exact opposite of what I had been expecting. No tears, no signs of significant distress or great mental anguish. I honestly was expecting Muddear to completely fall apart. If it were my child, possibly even my husband, I would have screamed and yelled until I was catatonic! Most likely, I would develop Dementia or Alzheimer's - lose my mind, forget who I was, and begin making random calls to 911. (I guess I am just a drama queen.)

Yet there sat my grandmother, full of strength and grace, who simply stated, "I always told Walter to take care of himself. If he would have listened to me, we would not be in this place. It hurts, but he should have listened to me."

One day I hope to attain the type of strength that Muddear exhibited. She is truly a special lady.

Sad News - Part 2

I am sad to say that my dad passed today around 4:20 p.m. while residing at Cardinal Hill. I really just can't go into all of the details as I am sure you are not that interested.

But, I will share with you that Walter passed quickly and without pain. Thank you all for your thoughts and prayers. I know that he is happy now to be free from all of the equipment and tubes and monitors and the list goes on.

I was blessed to have these last few months with him. God is always in control.

Earlier today Mike took Muddear back to Brookwood for a weekend respite stay so that we could spend time together for his birthday. I was able to sit at the hospital with Walter and simply and quietly accept his death. This weekend Mike and I will spend quality time together as I prepare to gently break the news to Muddear on Sunday.

Please pray for her strength and ability to bear with the loss of a child.

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!

Homecoming

Muddear is home from her respite stay at Brookwood Retirement Community and all is well with the world except one minor thing... It appears that Muddear is hearing music playing from a radio that unfortunately no one else can hear. She currently called me into her room twice in the last 30 minutes to "turn the radio off, because she can't stand music." I cannot say, "Sure Muddear, I will turn the radio off" because she just might hear the music again. What would I say then?

I relied on honesty and simply stated that I could not hear anything. This of course, got me N-O-W-H-E-R-E! My second attempt at resolving the problem led me to say, "You must have been dreaming." I thought I was pretty clever, until Muddear stated, "No, I was never sleeping." After more questioning about the current state of the radio sitting on the nightstand, I began grasping at straws stating, "I don't know where the music is coming from, because your radio is unplugged." Muddear's response..."You are right, I certainly did not plug it up."

It is officially 35 minutes and counting since this began, with no calls to "turn the music off" within the last 10 minutes. Perhaps Muddear is asleep, I certainly should be.

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.