INTENSITY (96)

I struggle. Mom is not responsible for all her actions and I am stressed because she is not the person she used to be or wants to be.
This transitory time has been difficult. Many of my beliefs and assumptions have been confronted and changed. I’ve learned how difficult it is being a caregiver, daughter and enabler. Understanding and coping with reality are very different words. Putting it into action is the difficulty.
The accruements of age are at hand: Walker, cane, electric chair and myriad bathroom adaptations. Mother’s shrinking frame is ensconced in her lazy boy chair. An oversize, plush backrest is attached to provide more comfort and warmth. Mom feels chilled and the cold is pervasive and causes her body to ache constantly. Warmth and comfort have become illusive for Mom. There is a pervasive smell in the room. No matter the bathing or cleaning, the air freshener’s, or open windows the odors linger and seems to be the harbinger of what is to come. Mom is dying…..not today, or even this month or year, but it feels intrinsic as a smell, sight and feel.
Mom’s domain is ruled from this very small space. Every single inch of the room is crammed with furniture, photographs, papers and memories of a much better time of life. Living has been winnowed down to one room….one space… and the day’s primary concern is the systems that function in her body. This is how she is living out her days on earth, and now Mom has determined that her mind plays tricks and swirls constantly. Time has no meaning other than attached to when meals will be served. Mom comments frequently that she is so fortunate to have lived longer then her friends, neighbors and family members. I am
continued to be filled with admiration for her unceasingly positive attitude. I suspect that I will be complaining until I am blue in the face, so no one will ever wish to be in my presence. Mom still enjoys engaging in conversations and is unfailingly most welcoming. She is amazing.
Alas, there is no one that she wishes to relate to on a common generational level. There is no one to whom she can turn to share her pride in a great grandchild or to share and complain about ongoing aches and pains. Alas, I see eyes rolling and a sense of impatience with many individuals who enter Mother’s domain…..and I include myself. Everything that is stated needs to be repeated numerous times because of her refusal and discomfort in wearing hearing aids. Due to Mom’s own sense of high standards she refuses to leave her room unless it is an absolute necessity. She is ashamed of her appearance and particularly her thinning hair. Mother detests wearing a wig. She feels she looks like Harpo Marx! Her annoyance is only increased when she does venture into the dining room and has to deal with mindless babble. This is Mom’s interpretation as she cannot hear and assumes that people who are speaking are there for incompetency reasons. Some individuals are unkempt, but most are tidy and dignified. Mom wishes to be alone. Solitary. She wants her meals delivered to her room. Cost is not an issue for her.
“When your Mother first arrived here we assured you that she would become more social as time passes,” stated the Head Nurse. “You seemed most reluctant to buy into that statement. I hate to admit this but you were absolutely correct. In my 16 years in the profession I have never met a more stubborn woman in my life. She only does what she wants to do….. when she wishes to, and she is adamant. Your Mother is very, very sweet and never wishes to bother anyone, but she will not be deterred from doing what she wishes and will not accept another option.”
Must admit that I do admire her continued decisiveness, albeit, it has turned into stubbornness and I hope to be exactly like her. She knows what she wants!!
When I enter into Mom’s room she immediately brightens and I am hailed as her lifeline. I am esteemed and put into a sainted position. I am none of the above.

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MOM-ME

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2010 (95)

“If wishes were horses, beggars would ride.”

 

Mom is back in her apartment at The Resort.  I plan to stay with Mom and procure help to augment the times when I need to have a break.  Many are questioning the wisdom of my decision.  If I don’t do everything in my power to make Mom feel whole again, I would be lacking in compassion and I would be unable to live with myself.  Perhaps, I am just lacking in common sense!  I know how very much it means to her to be independent and I know my limits in that I just cannot have Mom with me 24/7.  Emotionally, I cannot handle her presence 24 hours a day and I am horrified that I even can admit this to myself.  I wish I were stronger and I wish I were more patient and understanding.

 

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HOME ?

HOME     ? 

2010 (95)

“If wishes were horses, beggars would ride.”

 

Mom is back in her apartment at The Resort.  I plan to stay with Mom and procure help to augment the times when I need to have a break.  Many are questioning the wisdom of my decision.  If I don’t do everything in my power to make Mom feel whole again, I would be lacking in compassion and I would be unable to live with myself.  Perhaps, I am just lacking in common sense!  I know how very much it means to her to be independent and I know my limits in that I just cannot have Mom with me 24/7.  Emotionally, I cannot handle her presence 24 hours a day and I am horrified that I even can admit this to myself.  I wish I were stronger and I wish I were more patient and understanding.

 

“Why do you insist that I have these people staying with me?  This is a terrible waste of my money.  I am not stupid.  I have enough common sense to know that I will fall if I am not careful.  You don’t have to be here all the time, either.  I know what I am doing.”

I am realizing that through all of these past few months that there has been no one following Mother’s physical, mental and emotional progression/regression, other than myself.  No one else has an overall picture of what she has been through and what has occurred.  Her Internist turned her over to a Hospitalist who assigned several services to examine her and she was then turned her over to the physician at the Rehabilitation unit. 

My thoughts and feelings have been detached and I have reacted like a 65+ year old daughter whose Mother is in physical pain and having a mental hiatus.  I had no idea of what medications Mom has been receiving for so many, many months of hospitalization.  Whatever medical background I felt I had was certainly not a part of me.  My mind had shut down and I was in an emotional trough.

I have been instructed that Mom needs to continue with the pain medication or she would be right back where she started.  Mother has not complained of pain.  Mom was told by the physician that all the medications may make her fuzzy, but she will be able to function and enjoy her life.  I am appalled with how much drugs Mother is being given and it is no wonder she has been acting so mentally skewed.  Do we have any recourse?  Do I make the decision to take Mom off some of these drugs and deal with the consequences?  Are the drugs really necessary or was this pacification for the patient and an attempt to limit her unwavering need to do it herself?   Is it so important that she have her wits about her when she is being given full time care?  No answers, just gut feelings.

Stephen and Sarah came over several afternoons to spend time with Mom and allow me some time at home.  Mother went into her bedroom using her power chair and managed to get her power source cord wrapped around one of the knobs on her dresser.  If Stephen had not been present she would have pulled the entire dresser and attached mirror on top of herself.  How did he know what had happened?  He heard her banging into the dresser over and over trying to move forward……….

Two months have passed since Mom has been out of the confines of the hospital, rehabilitation and has returned to the Resort.  She needed to do something she always enjoyed and that was shopping.  Mom wanted fresh air and an exposure to what had been normal living.  It was time to celebrate her return with a trip to Wal-Mart.  Mom was so happy.  I stopped the car in front of the store and went inside to retrieve one of their power carts.  Mother beamed and was so excited to experience this opportunity again.  I parked the car and entered the store and Mom gestured to me that she needed to use the rest room, but knew she wouldn’t be able to walk into the stall. She didn’t know what she was going to do.  I assured her that the rest room would allow her to drive the cart right in and use the handicapped facility.  I could assist her off and on the commode and together we would manage. 

Mom powered off and ever so slowly entered the restroom, turned right a proceeded several yards into the handicapped stall without one problem.  I helped her out of the power chair and made sure she was solidly on her feet.  I gave her privacy and stood outside the stall.  Several groups of women entered into the restroom. Within a few minutes I hear Mom banging into the walls on her cart.  Keeping my wits, I entered the stall and attempted to lean over Mom to operate the vehicle.  Leaning over Mom’s back and being short, I could not engage the controls properly, plus Mother refused to remove her hand from the switch. I tried to pull the switch back and Mom shoved it forward and WE zoomed into a very small place between the commode and sink and I felt the impact of the wall into my spine.

“I CAN DO THIS IF YOU AREN’T HERE.  THERE ISN’T ENOUGH ROOM.  PLEASE LEAVE ME ALONE.”

I knew better than to argue and I knew she would not be able to do it on her own, but decided I would let her try as I didn’t want her to become even more upset and distraught.  I walked towards the sinks and heard her banging around as the rest room filled with people. 

A young, accusatory voice is raised:  “Why is that poor lady in there all by herself?  Why would someone leave her there?”

Mother responds:  “MY DAUGHTER IS HERE WITH ME.”

I stepped forward out of my safe zone and announced that I was the daughter and Mother had asked me to leave her alone.

Many eyes turned towards me and realized that I was not some irresponsible idiot and then I saw reality flicker in their eyes and sympathetic looks being given.  Apparently others have walked in the same shoes and realized that all one can do is deal with the situation at hand.  A kind, young (!) woman told Mom that she would help her out if she were able to get on the vehicle herself and she would turn it around for Mom.  She did.  Mother and I were both extremely appreciative.  Major crisis and embarrassment averted. 

It was not a good start to this day, albeit the worst was yet to be.

Mom left the rest room headed toward the Nail shop and, once again, smashed into the receptionist’s desk.  Things were shaken, and people were startled, but nothing toppled and the desk was straightened.  Mom is humiliated. Thinking I would help, I told Mom that I thought the best thing to do was for her to sit in one of the regular wood chairs, and I would push her to the table where her nails would be done because she was not supposed to put weight on her leg unless she had a walker.  All was fine until she caught a glimpse of herself in the mirror sitting primly on a wooden chair, purse on her lap, with her evil, malevolent daughter pushing her 20 feet forward.  I had mortified and degraded my Mother (AGAIN) and she was fit to be tied.  I could feel the steam rising.  One would swear that I had stripped off Mom’s clothes and made her parade through the town square.  She was shaking with anger and was barely able to keep herself from screaming at me.

JUST GO AWAY.  RIGHT NOW!  GO AWAY.

I returned in 90 minutes and Mother had her nails done and was very happy with how pretty they looked and how good it made her feel to be pampered.  We lightly talked about the miss-adventures of the day and she was able to laugh and seemed fine.  Experiencing touch and a sense of caring from a stranger provided comfort and the dear nail specialist had charmed, deferred to Mother’s age and treated her like the Queen ‘Mum” that she felt she was. Mom was very delighted.  The Asian culture treats the elderly with deference and honors them for their age.  The sweet lady who helped Mom and me that day probably will never know what true service and dignity she returned to Mom that day.  I wish I knew her name to thank her publicly.  It is these random acts of human kindness that mean so very, very much.

I am dealing with a force that I cannot control.  I need to help Mom.  I do not wish to have her angry with me and I do not want to make her life harder.  I want her to have peace, love and enjoyment.  I know she wants the freedom to go where she wants…when she decides… under her own power.  She cannot accept her limitations, and obviously I can’t either.  We are both frustrated.

Time passes and I realize that augmented independent living is not working.  What to do?  Where to go?  How can I make rational judgments when I am not rational about my Mother?

Sarah has generously offered to have Grandma live in her house.  She related that she is away all day and she could easily provide Grandma Breakfast.  I could be with her during the day and Sarah would return for the evenings.  I gave it serious consideration, but realized Sarah needs her own life.  She cannot run her business and have the worries about her Grandmother with which to deal.  Plus, her home is just not designed for another person.  When someone lives with you there is absolutely no respite.  I will always treasure the gracious act of kindness and self-sacrifice, especially when I could not emotionally accept the responsibility.

I attempt to wend my way through all of this mayhem.  Sarah and I  have checked the possibilities and practicalities of townhouses and condominiums with live in help, as well as Assisted Living Facilities.  I do know that Mother’s needs and level of care are too much for me and I am being unrealistic to think that I can cope.  Josiah use to tell Mom:  “You can do whatever you put your mind to do.”  That is true, but if options are presented which would make life easier to cope, than one would be foolish not to follow through. 

“Karen, you need to remember that it is MY money that you are so cavalierly (!) spending on having these people in my house.  I DO NOT like it.  I DO NOT want them here.  Get rid of them and stop wasting MY money.  Just let me try it on my own for a bit.  I will be very careful.  I will use the call cords, or call down to the front desk and ask for assistance if I have any trepidation.” 

Joanne, my rock in Iowa, sent me the following email:  “You are doing the admirable thing in trying to honor your mom’s wishes and desires, while the reality is that those days are quite limited.  Knowing that they are limited is anxiety producing because the next telephone call or the next contact could once again turn things on their ear and you are back at square one.  At some point you are going to have to say to your mother that you simply cannot do this any longer and she will have to move to a different level of care.  When and how that happens only you will be able to determine as you are honoring her wishes, but you must not be afraid to take into account your own needs and those of your family who are also embroiled in her care needs.” 

Inadvertently, this morning, I used the wrong contact lens solution and put my lenses into my eyes. I am in such pain that Stephen has taken me to Emergicare.  I am beside myself as the pain is just overwhelming even with eye washes and steroids being administered, I was told to stay out of the light and it will eventually subside as the inflammation decreases.  I sit in my darkened closet trying to figure out how I could have done such a foolish thing.

It wasn’t until I embarked on writing all of this down that the picture of what I was experiencing impacted me.  I was constantly and consistently, yet not deliberately, manifesting my internal stress.  There were days when I wondered which of us would out live the other.  My sciatic nerve was pinging because of the twisting and assisting.  Mentally and emotionally I was at wits end and really didn’t know how to cope and found that I just tried to put one foot in front of the other.  I felt adrift and no one could provide answers for me.

Another “AH HA” moment has occurred.  Mother and I deal with issues exactly the same way.   When Mom wishes to avoid doing something she has physical manifestations of problems.  I have made several appointments for us to look at Assisted Living Facilities together.  Mother always is either too tired or does not feel well, or has a killer headache.  Mishaps tend to occur when she is angst filled.  I believe with my whole heart that this is not intentional.  The more I think of this the more I realize this is on target.  I have dealt with an increase of sinus infections, migraines, clumsiness, tripping, mistakenly using the wrong medications, increase in diverticulitis activity and the lovely shingles.  This is the personification of mind- body connection and the fact that I am impacting my immune system from stress.  I know I am too involved emotionally and I am aware that I can’t see the forest from the trees.  The time for the next level of care for Mom is now.  Once again this morning Mom has pleaded with me to put a cot in my laundry room so that she would be near me. 

“If you could just live with me everything would be fine.  Stay here with me, as that is all I really want.  We can watch television together and go down to meals.  You can do anything you want here.  You would enjoy being in the Atrium and participating in all of my activities.  Please, think about it and if that does not work, then perhaps I can move in with you and Stephen.”

Mother has refused, and insulted individuals and complained about needing to continue her therapies.  She has been rude to staff and very short with me.  I am exhausted.  I told Mom that solo living was not working and I had looked at several ASSISTED living facilities (that was so very important of a word to use, and it is true.  The words Nursing Home just conjure up so many horrific images and, sadly, the reality is that the memories of sights and smells are ghastly.) 

“I have found several facilities that allow you to have your own apartment with your own furniture and it will be much closer to my home.  I will be able to spend more time with you if I don’t have to drive so far.  They offer many of the same activities as The Resort.  Their dining rooms are very attractive and they have specific game rooms and living areas.  I would like you to be part of the decision making, but Sarah will come with me if you won’t and we will decide within the next few days.  I have appointments made for tomorrow.”

“Oh my, I don’t think today I will be able to go anywhere.  I was in the elevator, in my power chair and I was ‘being polite’ by backing in as far (fast) as I could and my chair became entangled with that little metal chair they keep in the elevator.  I could not break it loose.  I pushed and tugged and shoved and strained and today I hurt all over, so I am taking a few aspirins and going back to bed”.

“I understand, but I am not cancelling the appointments and Sarah and I are going.”  Mother decides to accompany us out to see the places, meet some people and have lunch.  I know she detests the thought of moving and disrupting whatever is left of the routine and life she has established at The Resort.  But, the time has come.

Henry Ford has said:  “IF YOU THINK YOU CAN OR YOU THINK YOU CAN’T, YOU ARE RIGHT.”  The power of the mind and specifically the thoughts dictate the direction of our lives.

We moved Mother into her new apartment at Silver House and she directed where she wanted everything to be placed.  Earlier in the morning, Stephen had hung a bird feeder outside her window and we had placed a large hanging, flowering plant next to it. The bird feeder was filled with birds and Mom’s apartment was filled with light. A lovely flower arrangement was delivered to her from the staff at Silver House.  Silver House had approximately 50 occupants in various stages of needing assistance.  Several residents welcomed Mother and the staff was warm, welcoming and attempted to make her arrival as easy as possible.  I was advised not to contact Mom for a few days to give her a chance to adapt.  Rightly or wrongly I chose not to heed that advice.  Mom needed me, and I needed her.

An adjustment period has begun and Mom is telling me she cannot open her mouth to eat.   She is losing weight, but is consuming sweets (provided by me).  Why not, I say!!  Sleep is Mom’s only nemesis.  Mother insists that the only reason she has fallen in the past is because she hasn’t been able to get enough sleep so that she will have strength.  She has been emphatic informing the staff that she needs the nurse to bring her sleeping pills.

“Karen you said you would be here for me and I cannot believe you will not do me this one little favor.  I am sick of taking all this medicine and those pain pills I don’t need them anymore.  What I do need are more sleeping pills because they are the only things that help me to relax and rest when I need my sleep.  If I don’t have sleeping pills I cannot sleep and I cannot function.  I want to stop those pain pills.  You just call the doctor and tell him that I have to have sleeping pills for my nap or I don’t feel rested and I can’t think and I cannot function.” 

“Relocating again is hard, Mom, and I will continue to be here and do everything in your best interest.  I just want you to be closer to me so that I can spend more time with you and Stephen and Sarah will stop by more frequently.”  I reminded Mom that taking sleeping pills contributed to the last hospitalization and rehabilitation that was necessary and how she had spent months getting out of that situation.

“I really don’t care what you want.  I want to stop those pain pills and I want sleeping pills so that I can rest when I take a nap.  I am sick.  I don’t feel well.  All I want to do is to be able to sleep and feel better”.

“I do hope you feel better and I would do anything in the world for you to be able to resume the life you use to live.” 

“Please do not be so formal with me”, Mom says in a very tiny voice.  “I just want you to know that I am sick and I want you to think about stopping those pain pills because I really do not have any pain and I think they are just causing me to feel worse.”

“You may be right.  I promise I’ll talk to your doctor about it, but Mom sleeping pills are highly regulated and they are just not going to allow you to take them any time that you think they’ll be of benefit.  They can scramble your brains!! Seriously, there are many accounts where they cause amnesia and the person does not even know what they are doing or what they did.  Remember some of your falls and how you had no recall?”  This is not what Mom wanted to hear or contemplate and within a nanosecond the subject was changed.

“You know YOU are the reason why your brother will not be visiting me on Saturday.  He called and told me he wanted to see me for Mother’s Day and I told him that YOU had decided that I needed to move closer to you and I would be in my new location.  I gave him the address and everything, and he told me he’d make it another time.  Do you have any idea how much that hurts me?  I haven’t seen him in so long and now you decide that this is too much for you and I have to move.”

The Resort is approximately 10 minutes from my brother’s home.  Silver House is 5 minutes away from his domicile.

 

I have unilaterally decided to follow Mother’s wisdom and with my rapidly dissipating medical knowledge and take her off the majority of the pain medications.  Mom is taking eleven medications including several mild pain relieving medications and very strong timed-relief pain medication.  I tapered them off gradually.  Mother was able to take an Aleve for pain and dispose of all the other drugs.  Need I say that Mom’s over all mental and physical health seemed to escalate?  Amazing!

 

 

I am being counseled by the Director and the Head Nurse.  I am told that Mom is difficult and stubborn and way too dependent upon me.  She has been very intense in telling people that she needs sleeping pills and asks the nurses to bring them to her all the time.  When someone enters her room to chat and ask her if there is anything she needs or wants she replies my daughter will get me anything I need. 

Everything on Mom’s ‘entrance’ sheet calls for observation and information to be provided by the individual or a family member.  Most is based on a numeric value of 1 to 10 with 10 being the highest.  Mom provided the following:

My most important concern is my Energy.  I feel depleted and lacking in motivation.  I am mentally fuzzy and have sinus headaches.  I desire to sleep or nap but when I lie down I have a continual electronic feeling.  I am bothered by my immobility due to arthritis but the pain is minimal, but I am clumsy and I have a lot of numbness.

Silver House invited me to attend a meeting for “Caregivers” and it was chaired by a member of Hospice.  I think it has thrown a switch for me in my emotional and stress laden point of view!!

The communication from the group has given me food for thought.  I am a Grade A enabler!  I walk right into a situation and with an open mind and heart and my angst just blows all out of proportion.  I do not wish to harbor feelings of resentment and I must learn to accept my dear Mother as who she is NOW.  She has been impacted as much as I have, but I still have the capacity to do something about it.  Life really is learning forever.

Mother is going to some meals and seems to be socializing with several people.  She appears to be much happier now that the ‘worst’ has occurred.  Silver House is like a large and loving family.  Everyone knows everyone’s name.  They always stop and ask Mom if she would like to participate in this or that activity.  We all are starting to relax and adjust just a bit.  At night Mom is checked several times and there is an access cord right by her bed in case she awakens and requires anything.

Exactly one month to the day of Mom’s arrival I am called early in the morning hours and told that Mother was taken by ambulance to the ER with a head wound.   She is alert.

Arriving at the ER I see Mom with a huge bruise around her eye, which eventually covered the entire side of her face.  Mom actually seemed impervious to any pain, but was complaining about how uncomfortable the back board on the gurney was.  She had fallen and hit the floor face first.  Dr. asked if she took aspirin every day, and she related that she did and he commented that it works extremely well as this head wound would not stop bleeding.  The head is very vascular, and that is not unusual, but even with the administration of epinephrine to numb the area and constrict the blood vessels, the bleeding did not cease.  We spent four hours in the hospital that morning.  Little did I realize that these people would become like next of kin to me.  We were there a lot.

One week passed and same scenario.  CAT scan was run and Mother was kept overnight.  CAT scan reveals that Mother has blood in her brain on the opposite side of her injury.  Sketchy information as Mom really does not remember much.  Talked to nursing staff and nurse reported that Mother had used her call string and she came into her room to find her on her knees by her walker.  She examined her and there was no problem.  This morning the Occupational Therapist walked into Mom’s room and found her pillow saturated with blood.  Mom was unaware that anything was amiss.  I realize my brain is shutting down as I cannot comprehend why or how this happens, and yet I know that the falls will never cease unless someone is tied down.  Falls cannot ever be totally prevented.

Head Nurse gave me a hug and commented that if she had her way she would bubble wrap everybody and duct tape them to a wall!!!  This is hard on everyone.

Mom was released from the hospital and the Director came out and welcomed her back and personally pushed her wheel chair and wrapped her in a warm blanket.  Interesting, Mom is just delighted with the attention and the number of people who are wondering what has happened to her.  She is not complaining of any pain, and she is actually beaming upon her welcoming committee.  Mom’s sense of humor is intact and she is having lively conversations with everyone who approaches her.

This was going to be the pattern of our days.  We would go from bad to good and from better to worst without rhyme or reason.  Fewer and fewer trips to stores were made as the days went forth.  I have been urged to just allow Mother to talk about things that make her happy and not try taking care of her.  The staff is there to see her through it all.  I need to be her friend and daughter, not her caregiver.  I know I should detach, but I need my Mother.

I hate that Mom has to go through this life change and I am overwhelmed and cry for Mom and Me.

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REHABILITATION…………….no, no. no!

“When am I getting out of here? I just want to go home. I can do everything they think they need to teach me. Why must I stay here?”

It is hard not to cry. I see Mom’s face as she questions me on the duration of her time. I have told her that she is being evaluated and they will inform us of just how much additional care she needs and if she will be able to manage with minimal assistance or needs long term care. I have purchased a cell phone for Mom. There are no telephones in the rooms, but a portable telephone for the entire hall. What an injustice to our elders whose fingers are not nimble and the true elderly do not know how a cell phone is supposed to work. I preprogramed the phone to call me and I hope that it has made Mom feel not quite so isolated. Unfortunately on many calls Mom holds the telephone upside down and I am yelling into the telephone: “Turn the telephone the other way.”

“I CAN’T HEAR YOU. SPEAK UP!”

This would be repeated for several minutes and end with a click. Mom would hang up. I would call the Rehabilitation desk and ask someone to go down to her room and show Mother how to hold the tiny telephone so I could speak to her. I did put red nail polish on the call button, as well as the end in which to speak.

“I will NOT live in a nursing home. I will kill myself first. Promise me that you will take me into your home. You can just put a cot in your laundry room and I won’t be a bother. I cannot and will not live in a nursing home.”

Mother has been so proud that she is becoming stronger and her arm muscles are especially toned as she has been forced into using them. Physical therapy is working. Prior to Rehab she would rock herself back and forth in a chair to gain some momentum and that would enable her to get up on her feet. Now she is able to pop right up! Mom’s short term memory loss needs to be explained to me. I keep asking, yet I still do not receive answers. Could stress from her hospitalization or from all the medication she is taking be the cause? Is it a result of age? What is considered normal at this point in time?

Physical, Occupational and Language therapy are rotated and they give Mom 3 to 4 hours daily. I felt guilty to realize that Mom had lost her ability to use words. I have been just responding to whatever gesture she would make and I had not realized that she was unable to think of the word, much less vocalize it. (Unfortunately I, half the time, can’t come up with the right words either! I am not so far behind my Mother.)

It is not funny, but a situation comedy is occurring. Every day a new issue seems to occur. Mother has developed atelectasis (partial collapse of her lung) which results in a continuous cough. It sounds like Kennel cough. It is harsh and horrible to hear and it must be exhausting for her to try and manage it. Staff has commented that it could develop into a critical situation and they are having an additive (gelatin like mixture to make liquids thicker) put into her drinks as eating and drinking seem to trigger the cough.

“I am just not going to eat or drink anything if they insist on putting that nasty thickening agent into everything.”

I explain to Mom what I have been told and why it is necessary to try and stop the lungs from completely collapsing. Mother acknowledges that it makes sense sand she is willing to go along with it. The next meal is served and we are back to question why they are putting this junk into her food. I try to be with her for several meals during the day to ensure that she will eat.

My friend, Mary, has had her father living with her and her husband for the past few years. He is now 98. He has helped ME to keep MY sense of humor. He is slipping into dementia. He will tell his daughter that she should not tell him to “Shut Up”. Mary NEVER says those words to her Dad and never has in the 40+ years I have known her. He, with increased frequency turns to her and says: “Just tell me to shut my damn mouth and go to hell.” This is a man who has been a staunch Southern Baptist all his life and never drank or swore in his daughter’s presence. One of his most memorable sayings has proven to be prophetic: “Every day another DAMN thing.”

A staff member has upset and incited Mom. “…maybe you don’t belong here as you cannot follow rules….perhaps, the place for you is in the Nursing Home wing.”

“KAREN, you must talk to the powers that be! I have never been threatened like that and I am not going to accept that intimidating behavior. She spoke to me as if I were a dolt! I will not be threatened. I am doing the best I can and I am trying as hard as I can to get out of this place!”

What I gleaned was that a staff member came in and found that Mother was already in her wheelchair and had been to the bathroom, and her clothes had been changed. Mother told me that she had waited and waited for help, but no one came and she did not wish to soil herself. I concur with Mom. I went to the Administrator and she immediately apologized and told me it was not acceptable. I told her that I knew Mom had become confused, but I felt she was 100% correct in this instance. She provided me with her cell phone number and told me if anything like this happens again to call her day or night. It is amazing how pacified I became because I was heard and acknowledged as having a viable and legitimate concern and given a telephone number to call.

As Mother struggles to improve she is up and out of bed more and more. She awakens in the morning, gets dressed and will sit in a wheel chair or on her bed after it has been made, to show everyone the strides she has made. Today she was taken into the dining room to have her meals with others. There is only one dining room for the rehabilitation and the nursing home units. The aide pushed Mother up to a table where a woman sat looking off into space, her eyes glazed over. Another woman was sitting at the table, almost, inhaling her food. No one spoke. The aide places a large oversized adult bib on Mom and snaps it into place. The snap sounds like a bullet from a revolver. Mother’s face reveals all. She is mortified and feels revolted by such an assault to her feelings regarding her self-worth. I am right there with Mom. This is horrible and just cannot be happening to my proud, lovely dignified Mother.

Mom is experiencing major issues with her gastrointestinal system. My best guess is that it is due to all the medications interacting and her lack of physical activities. Advice for all: STAY AND BE REGULAR!!!

Mom told the nursing staff that her teeth were hurting. Apparently more than 40 years ago, according to Mom, she had two molars break off at the root and never had anything done about them. We went to see an oral surgeon who will extract them.

(This is easier said than done. THIS is the real essence of being a caregiver. It means signing Mother out and in, the Rehabilitative center. Making sure I have my car at the right door, so that I can bring Mom out of the building and wheel right to the car door. It is angling the wheelchair properly and reminding Mom not to try and ‘jump’ out until the wheels are locked and I am positioned so that I can assist her out of the chair and into the car. Mom is very petite, and I am becoming larger and more ample! I lean over the wheelchair, with my hands under Mom’s arms and try to encourage her to remember the placement of her body parts. Her tendency is to put her foot into the car. This no longer works, as she is not stable on one leg. She must stand up and turn ‘like a ballerina,’ and place her bottom onto the seat of the vehicle. At this point my body is tipping over the top of the wheelchair as I am so concerned she is going to fall. Mom is now seat belted in place and the wheelchair must be folded and placed into my car. Arriving at the office the process is reversed with wheel chair assemblage; both feet needing to be swung out of the car; the ballerina turn and down into the seat. I bring Mother into the office and make sure she is secure before returning outside to reposition my car and not block the doorway.

Now, need I add that there is a slight complication as one of the roots is wrapped around the lower jaw bone? Anesthesia is administered and Mom has the teeth extracted. Fortunately, the procedure went much better than I had anticipated and Mother went back to Rehabilitation and fell sound asleep and hasn’t acknowledged one iota of pain.

The next morning Mom awakens and is pleased that she is without pain, but her lower partial denture is missing! It was in her mouth yesterday afternoon when I brought her back and she had eaten her evening meal. The staff has written up an incident report. I have thoroughly checked all of Mother’s drawers and bedding and looked through the waste baskets as have several staff members.

There is nothing that could be more humiliating for my Mother. She only has three small teeth on the bottom of her mouth. She harbors the belief that someone took her teeth and they did this to make her feel bad about herself. She asked me if I thought the dentist could have snuck into her room as he wants her to return so he can charge her for false teeth that she now needs. (This is not my Mom’s right mind. She knows the difference between someone who does oral surgery and someone who fits dentures. I cannot help but think the anesthesia and medications have overloaded her cognitive abilities.)

The Physical Therapy department arrived during Mother’s justified emotional melt down and dangled the carrot of hope. IF she were able to show them that she can successfully transfer from her bed into her wheelchair they would take her up to her apartment and evaluate how she is able to manage there. She immediately transformed back into MY Mother. Her release was on the horizon! She performed with great dexterity and off she went with her head held high, momentarily, forgetting that she was virtually toothless and her damaged pride in her appearance. I feel so badly for her. Why does this happen? Why do I feel so responsible for yet another incident in her life that I couldn’t control?

Throughout these past few weeks I have been dealing with personal stress by corresponding with friends and family. Helene, my cousin, sent me the following: “In the words of Ricky Ricardo: Aye yai yai yai yai! Try to make the best decisions that you can and then live with them. That is what we all do throughout our lives. Your Mom needs more care than you can give her and who better than you, a former nurse, to know this. But then things always get messy because of the ‘good daughter’ thing. If your mother wanted to be on a diving board and jump into a pool would you let her do it? SORRY – bad analogy. Don’t answer that question. I know my Mom would survive and I would drown trying to save her.”

Thank goodness for levity and common sense. I don’t know what I would do without support. I currently have a mighty band of shingles doing their drunken, painful, scabby march across my back and ribs.

Today I was asked what I wanted for my Mother as far as her dismissal and where I would like her to be. Of course I would like her to be back to her normal, independent self. I feel that her confusion has become worse and I would like to blame all the medication she is receiving, but her pain level has dropped to only a 2 or 3 so the seems to be controlling her pain. I know she is not safe by herself and whether it is using a walker or a wheel chair, she forgets how to safely use the apparatus. Brakes are seldom used and it is an accident waiting to happen.

Stephen and Sarah stopped in to see Mom and while Sarah has been talking to Mom she hasn’t seen her and was amazed by how diminished she appears. Seeing Mother on a daily basis I have not recognized her fading presence.

My decision is made and I have a sense of peace. I want Mother to return to her apartment and I will employ people on a 24 hour basis. Mom has some savings and I feel it is better to use it for her care than save it for her Grandchildren. I have no doubt that this may be a $10,000.00 investment, but it is what will make Mom the happiest and I feel good with my choice. The staff will now work toward that goal.

We have been driving back and forth to a dentist who has tried to fit her very old set of dentures. Mom’s gums have shrunk so much, but she wants to save money by not investing in another set. He knew that it would be a series of adjustments and we were to have patience as we would eventually get there. We have been there 5 or 6 times and Mom has insisted that she will not see ‘that man’ any more. Nothing I can say will change her mind. She is adamant. She does not wish to see another dentist at this time. She just wants out of Rehab and she is tired of being inconvenienced by appointments and will deal with this sometime in the future. She is able to eat with her upper dentures and her ‘three small teeth’ and that is that.

I am annoyed. I imploded. I told her I knew about the inconvenience as I had been the one taking her to and from appointments and hoping that each time we would find resolution. I reminded her that she was the one telling the dentist that the fitting felt fine and then complained to me as soon as we were back in the car. I did not want her to give up as he seemed to have made a lot of progress and it may just be the next fitting that she will find the tooth a totally acceptable fit. “We are a team, Mom, and we are in this together.”

“YOU ARE WRONG. I know what I know and I cannot deal with it any more. I am 95 years old and I am still able to make my own decisions as to what I will and won’t tolerate.”

Mom is to be discharged after almost 30 days of rehabilitation. I have explained to Mother that she will need assistance in the morning and evenings and decided that we would see how she is doing and feeling at the end of the month.

I always confer with Mom regarding her thoughts. Mom is worried about her money and I do tell her that she will have enough in her estate for her grandchildren. This is her true focus.

I also feel badly that I became so querulous. Why on earth do I continue to try to push back time and have Mother respond as she did when she was in her prime? I am the one with cognitive problems! I cannot accept this change!

Discharge is imminent. I have cumulative evaluations that indicate Mother has some dementia and her abilities have been affected as she is not able to retain information that is necessary for her safety. All concur that it is not a question of IF but of WHEN her next fall will occur. I was told that Mom will be readmitted sooner or later but for now there were Medicare rules that needed to be followed.

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Protected: A STORY OF LIFE ALTERING DECISIONS

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REFLECTIONS

2012

This is my very first day in 67 years without your earthly presence.

You are gone. Yet, you are here.

Your spirit will continue to influence my entire life.

I know that the pain and aging process wasn’t easy for you and I know you endured more discomfort than you should have. You never got to the point, however, that you seriously attempted suicide. I know I became increasingly tense in your presence and was vigilant and consumed with concern. NOT ON MY WATCH! You had addressed taking your own life many times in the past, but I could not accept that to be your right. Today, I reflect that I am considering the same line of thought that you spoke to me so many years ago. I do not have the answers.

When I see myself in the mirror, I see you. I realize that you are who I will be in 30 years as I already have experienced the twinges of arthritis and the mental hiccups of memory.

You lived a rich and inspirational life. So many, many members of my generation commented upon your wisdom, style and mentorship to them. You wanted to be the person God created you to be and you were.

Mother of Mine, in an attempt to honor you for who you were and to try and help others through the miasma of aging, grief and its impact on all, I am writing the book you suggested. You will appear in a much better light than I as I was forced to grow from being your daughter to becoming your caregiver and best friend (which I did not wish to be….who wants to hear about their mother’s bowel movements or what some wizened man suggested to you as you walked into a room.) YUCK!

I really did not have an inclination that our relationship would evolve into anything but an enhancement of mutual respect and admiration. I was totally unprepared.

I have had to come to terms with myself and I have recognized traits that I do not like very much. I am selfish. I like things done my way. I can become overwhelmed with guilt. I did not want to embrace a caregiver’s role and resented it immensely. I want life to be easy.

I had to accept that you could be a master at manipulation. Going with the flow has always seemed to work best for me. Having had to think through my responses and actions and trying to second guess your emotional and mental acuity was extremely challenging.

I detested that you were being written off by more than a few individuals as experiencing dementia. While I did identify it unconsciously, I did not allow it to define who you were or my expectations of you. Perhaps you would have been happier if I had lowered my resolve. You have been akin to my personal light house with the first order Fresnel lens always emanating.

We experienced a lot of ups and downs. I am blessed with family and friends who listened to me rant and rave. Their sage advice has been lifesaving.

This is a journey most people will take and perhaps these musings may alert them to some of the mine fields that will be encountered. They will see me floundering and mucking through, and my dear Mother being at my mercy.

This is a story of Mom and Me.

It is not just about us, but family, husband, children, friends and all those whose life we have impacted. It is about those whom I wish I could have emulated. I still have guilt from not allowing you to live out your days in my home.

This is a look into the confusion, obstacles, irritations, problems, frustrations and decisions of Mom and Me and how we each tried to do the best we could each and every day.

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HOLIDAY MEMORY

Mother was always seeking for new challenges in her life. She was an avid crossword and suduko follower and adored using the computer. Frequently we would stay in contact throughout the day with emails. Visiting Mom throughout the week and with several daily telephone calls and emails, I felt that we were very well aware of what was transpiring in each other’s life.

Mother called and announced, at the age of 88, that she was thinking of getting married! SAY WHAT?? I was incredulous. Josiah seemed like a person who wished to care for Mother and share his life with her and Mom seemed smitten and obviously enjoyed his attention and companionship. She was concerned that everyone might think that she was being ridiculous, but they shared so many similar interests, like travel. (According to Mother’s standards, in order to travel with a man one must be married to him.) I assured her that it was her life and happiness and no one would question her decision, if that is what she really wanted in her future.

The honeymoon lasted approximately two years when tumultuous events occurred more and more frequently.

Increasing arguments and mounting physical debilitating issues were experienced by Mother and Josiah. They could not live together, yet they remained physically and emotionally dependent on each other. Being in the same room with them was becoming very difficult for everyone.

That Thanksgiving was a Holiday I will never forget…..and I do wish I could remove the memory!!

Josiah and Mother had arrived for the family gathering with their cane, walker and resentment as they hobbled over the uneven walk. Immediately Mother went into a bedroom and called me to follow her. Mother had fallen the day prior and is massively bruised from shoulder to her knee. She was extremely uncomfortable. She related how she had crawled on the floor “like a worm” for over an hour until she found a place to pull herself up. Why hadn’t she called for help, I asked?
“I was only in my underwear and I would NEVER allow anyone to see me like that.”

We were seated at the dining room table resplendent (I thought) with crystal, fine china and silver. Josiah had complained since he had arrived that he was having some gastric indigestion. Before anyone knew what happened, out came a belch along with his false teeth which shot out upon his plate making a resounding ‘Thunk.’ Without a thought or any false modesty, he spied a chunk of food on the upper part of his false teeth……. licked it off and shoved those suckers back in his mouth. Bon Appetite!!! EWWWWWW.

From: Musicsm@cox
After we left your house Josiah was very hostile and bitter towards me. He is angry that I will not live with him. He dropped me off and stated: “Karen has never said that the doctor told you that staying at the Resort is for your well-being.”
He has conveniently forgotten that we met at the Resort and that he had agreed that I should move back when I became so despondent and unhappy. He even helped me to return here. Is there anything you could say or do to show you back me totally? It would save me a lot of cynicism and anger.

I do hurt for them both. Mother and Josiah are upset with each other and with their lives that they are now leading. These are not their Golden Years.
Josiah continues to tell Mom that she can do anything she puts her mind to, and she should be living with him as his wife. Mother is consumed with guilt. On Christmas morning Mom asked me to call Josiah and tell him that the doctor told me that she should not be living with him. She wants me to convince him that she needs therapy that only the Resort will provide. I believe she has convinced herself that this is true and she absolutely believes Josiah will not listen to anyone but me. I told her that she has to handle this on her own. I know the doctor would never tell her not to live with her husband and I could not acknowledge that as being valid.

From: Musicm@cox
Please do this one and only favor for me. I will never ask you to do anything else in my lifetime……

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