Generosity of Family

16 08 2011

The decisions you have to make when you put a loved one into a managed care facility are numerous, difficult, scary, and expensive.  I had made these decisions over a year ago, and when it was determined that a private room would be the best thing for my mother, I turned to my family for assistance.

For me, I am usually a “do-it-yourself” person: do my own home renovations, change my own tire, make my clothes, design my own website, etc.  Asking for help was such a foreign idea to me, I almost didn’t do it.  But when it came down to choices like paying the private room rate and losing my house, or not paying my bills, asking for help seemed like a more “grown-up” decision.

I sent a note to everyone in my family,  extended family, and family friends.  I explained the situation, and waited.  I was so touched by those that offered to do what they could to help.  Two very dear women, who are on very fixed incomes began sending a monthly donation, of what I consider VERY generous for their financial situation, then, two women of the next generation also sent generous donations, and one even set the nursing home up on a “bill pay” arrangement!  The generosity of these amazing women lessened the $246 monthly private room + Cable TV payments enough for me to pay the balance and keep my house and the lights on.

A little over a year later, now that she has moved to a double room, the private rates are gone, and their kind generosity has been personally acknowledged.

Asking for help sometimes is one of the most difficult thing for caregivers to do, and I am not sure why.  It seems that family members and friends wish they could do more, and when presented with the opportunity to help in a financial way, they are eager to help.

Don’t assume you are alone, just because you are the primary care giver, the one who handles the day to day, don’t think that others wouldn’t appreciate being asked.  You might be surprised at the responses.



New Room, New Realities

1 08 2011

Waiting for a room to become available in a nursing home seems a little morbid to me.  But after about 2 1/2 months, I got a call to come look at a room on the first floor.  My mother had requested a room with a room mate, and this one seemed nice.  My concern was the new staff – would it be too confusing for her?  Would she adjust well?

I came to visit her on a sunny Saturday.  I told her they had found a room mate for her – she remembered she had asked for a room mate – so far so good. I asked her if she wanted to go see it.  She said yes!  So we went down to the first floor to the new room – 106.  Her room mate was mostly in bed, and didn’t really seem to speak much, other than to her daughter.  I had hoped that there would be good opportunity for her to talk with other people.

She liked it, and we told the staff we agreed to the move.  The draw back… she couldn’t take her recliner – not enough room.  They had already taken her Electric Wheelchair away, she was driving into walls and others with it. and now she was stranded in a manual wheel chair.  So, we made the move, and it seemed that she handled it fine.  There is always the risk when you move someone of that age that they will get too confused, or depressed or loose some of their “capacity.”  But Momma seemed to handle it in stride.

I had been coming on Wednesdays, Thursdays, Saturdays and Sundays.  Sometimes, if I missed lunch, I would come i the evenings, or later afternoon.  After the move, I began to notice  that as soon as she ate her lunch, she would just get too tired to even keep her eyes open.  So I shifted my visits to be there for lunch, or just before.

She would fluctuate between good days and bad days.  Good days were where she held her head up, looked around, and smile at people, carried on conversations (as best she could) and laughed.  On bad days, her chin was in her chest, her hands, like limp rags in her lap, she could not grip or hold on to a cup or a spoon, and she was not able to say much.  Such a difference in behavior.  I began bringing lunch, food she remembered and loved – peanut butter and banana sandwiches – I would make in front of her, for her entertainment, put mine on bread, and give her the fork and bowl, because it was easier.  Other days, I would make a Hot Denver Sandwich (deviled ham, cooked with egg, then on bread with melted cheese).  She would devour the whole thing!  We would sit, and enjoy these treats, talk and smile.  On bad days, she could barely hold her head up to eat, and ate very little.  But always, not long after lunch, she would be more than ready to lay down and take a nap.

I see my purpose in these visits as entertainment for her, a way to keep her interest up, her spirits up, and stimulate her mind, if I can.  I push her around, we go out side, if the temperature  isn’t over 95, and I try to ask her if she remembers people, or experiences.

When I return her to her room area, and let the CNA know she is ready for her nap, I kiss her, hug her, tell her I love her, pet on her some more, and leave.  It breaks my heart to leave these days, because I know that in 5 minutes, she will have forgotten I was there.

What Happened?

16 05 2011

My mother and I had settled nicely into her new reality.  She was happy to tell stories, was interested in hearing news, always asked about family, and was always cheerful.

One afternoon, we sat on the courtyard in the sun, in our favorite place. She had been at this facility for a year and I wanted to know if she was happy, or wanted to make any changes.  She said, “I am very glad you asked, I have been thinking, and I am lonely, I’d like a roommate.”  I was surprised, but was glad I had asked. She said how it would be nice to have someone else there at night.  I said, “That is a great idea,” and we went in to put those wheels in motion.  We spoke with the Director of Nursing, the Business Office and the Head Nurse.  Everyone was surprised, but agreed it was a good idea.

The next Sunday was Easter. I came early and and brought her an Easter basket.  She was still in bed, but was up and eating breakfast.  I leaned in for a kiss and hug, and showed her the basket.  She mumbled something that didn’t make too much sense, but I figured it was still early.  Then I asked her how she was.  Again, she started out to tell me, but the sentence came out as nonsense.  I was concerned.  We tried some more.  I told her about the Rice Crispy Treat Eggs in  her basket, and she said, “ohhh,” and I showed it to her and asked her what it was, and she said, “yes.”  Then she began to try to tell me about something that had happened earlier.  It was as though someone threw a Scrabble board on the floor – words, but all jumbled up.  I called the nurse in and we tried to engage her in conversation.  No better.  The nurse said it seemed like the progression of the dementia, sad, but not critical.

She was cleaned up and dressed, and we went out to our courtyard to be in the sunshine.  She drove her electric wheel chair, but seemed to lose focus and drive off to the side.  We sat outside and she enjoyed the sun, but got frustrated that she couldn’t control her words.  She wanted to say something, but couldn’t get the words to come out.  The conversation actually dissentigrated into words and letters, “Vicki, I want to doo goo know with go been should in “C” “R” “A” with a bell to “K” “N” “O” boo git.”  Then she’d make a face because that didn’t sound right. “I can’t make it word do can bin!”

What had happened?  I had seen her confused, but I have never seen this before.  We went back in to see the nurse, and she seemed concerned now too.  I was thinking Stroke, and she thought maybe too.  We call the Ambulance.

Again, we were taken to the Hospital.  Diagnosis?  CT scan showed no Stroke, she did have a slight Urinary Tract Infection.  This is most likely causing the confustion.  NO.  But I am not a doctor, and the fact that she wasn’t acting like she does when she gets a UTI didn’t seem to matter – they were the professionals and that is what they were going to do.  Anti-biotics and a stay at the Senior Rehab facility.

After several days there was no improvement.  I spoke with the doctors and said that this wasn’t working and I wanted to know if it had been a stroke.  They told me that even if it had been a stroke, there really wasn’t any treatment for it, but the test was an MRI, which involved laying still in an MRI for an hour, so she would need to be sedated.  I said no.  She did not  react well to sedation and I didn’t want to confound the issue.

So she was released back to her “home” with a “possible” stroke.

It has been a week since her return and there has been no change.  Her ability to speak was frustrating to her.  She was able to get the first or “introductory” part of her sentence out, but the meat or middle part of the sentence was lost.  She would say, “I am so glad you are here, I wanted to tell you something.  Gr on want ranko bin jude. I don’t think is be my go on beek.” “Beek?” “I don’t mean beek, beed, bleed, bee…. oh pthfffthth!” “I can’t said my worlds!”   Then she would cover her mouth in frustration.

She can no longer tell me what she wants, or needs, or thinks. I just guess, or assume now.  Although this makes me so sad, it actually hurts my heart, with physical discomfort, I don’t let on that our visits are any different.  I let her go on, and do my best to either try to understand, or pretend that what she said made sense to me.  I can tell by her inflection and facial expression that she has made a joke and we laugh.  We sit outside and she tells me things, and I do more hand holding and petting now.  I ask questions more and assume the answers.  When she becomes frustrated when she realizes she cannot get out what she wants to say, I assure her that eventually she will find the words and we can just go on for now.

For me, our time together has changed.  It has dramatically changed from two way interaction to me just being there for her and making our time together as “normal” as I can make it.  This really makes a difference in her attitude and outlook.

I would give anything now, though, to hear her tell me one of her mixed up stories.

It’s a small world

7 05 2011

It was a scary road, at times there were tears. There were times I didn’t know what to do.  There were times when she said she didn’t want to go on. But, like the end of a rollercoaster, suddenly all the twists and turns, flips, dives and climbs, screams, and fears were over and we finally arrived.  It was a sad reality to me, but it seemed like she is happier now. She smiles more, there are no more paranoid assumptions that people are out to get her, or trying to trick her.  Her world is very small now, her thoughts are only of right now.  If she as a pain, or is uncomfortable, her conversation is as though she has been uncomfortable for days.  Once her problems are taken care of, she forgets all about it, and moves to the next immediate thought. She is happy most of the time, she is relaxed, and that makes her days more pleasant. 

It is Spring now, and we sit outside on nice days and just chat.  I would ask her about people in her past, and she would make up or mix up stories, people, and experiences with movies, TV and real life.  She told me stories about working in a car factory, and that people liked Chocolate, but it was bad because they spent all their time in line for the chocolate, then in line for something to drink afterward, and then they would all have to stand in line for the bathroom!  I began video-taping these stories, as she was having so much fun telling them, and they were so mixedup.  Her train of thought is only about 5 minutes long, and when she begins a story, after she gets into it, it takes on new direction, as she goes on.  It was a scary journey here, but now that she is here, she seems very happy, stress free, safe.

The Trip Down Here

7 05 2011

My mother has never been an overly strong woman, overly confident, or independent individual.  She often says about being alone, “I was a twin, so I didn’t even come into this world alone!” So as her world began to shrink, losing her independence, her environment limited to her room and the second floor of the nursing home, you can imagine that she would struggle against letting it go.  She found things to be angry about, to assert her opinion over, to declare her wishes about.  I believe that this was a way she found to hold on to her SELF; not being told what to do, and lead blindly along. It was important that I be attentive and listen, not argue and tell her she was wrong or being silly.  It was important to hear her, talk with her about it, and even discuss the issue with the staff, in front of her.  Even if the issue was silly, or unimportant, or just plain off the wall, it was important to her.  Often I would give a heads up to the nurse, before I brought my mother to the discussion.  So we could both be ready to Hear her and discuss options in her benefit. 

I really think that this gave her peace, on her journey down the path – a path that was sad to travel along, a path that was scary at times for her, trying for me, and not one either of us wanted to be on.  Because the path was the journey of Dementia.  There is no logic on this road, there is no rhyme or reason sometimes to the things that happen along this road.  Your only weapons and tools are your heart, your understanding and large amounts of patience and love. 

Because I am the only one who sits and talks with her on a daily or at least regular basis, I became her anchor to a piece of reality.  She holds on to that with a fierce tenacity. When she would get turned around, forget where she was, feel like she was lost, or that others were leading her astray, she would  reach out for me with the panic of a child clinging to their parent’s hand in the midst of a chaotic crowd.  If I was not around, she would have the nurses call me.  I never knew what would be her state of mind, but I always knew I had to be on her side.  “Vicki, I am so angry I let them do this to me again!  They said we were all going out to lunch, and so we all went up to the mountains for lunch, and when it was over, everyone started to go their separate ways, and they just left me sitting there!  Now I am up here and don’t know how to get down the mountain! Can you come get me?”  Reality – they asked her to come out of her room and into the dining room for lunch.  After lunch was over, the residence go about their business. But since she thought she was somewhere else, she got scared and didn’t know how to get back.   I tried logic for a while, that just made her angry and frustrated that I didn’t believe her.  I tried agreeing with her, but the fact that she needed to get home was still an issue.  I finally found a response that worked well all around.  “I’m so sorry that you are angry!  Was the lunch at least good?  What did you have?  You know, I can see on my phone, that the number that you are calling me from is the phone in your apartment building.  You must have already gotten home!  No, I’m not sure how you did it, but you must have done it! That is great!  I can see that you are on the phone by the nurse’s station.  If you ask the woman that dialed the phone for you, she can point the direction back to your apartment, if you like.  Why don’t you ask her now and I’ll wait.”

This type of response allowed her to be heard, she wasn’t wrong or crazy, she was complimented for doing something right, for figuring out something she thought would be difficult, and she was already in a safe place, with people who knew her and where her room is.  This response was always received with slight surprise that she had made it home already, but the relief and  slight self confidence helped her believe this reality and let go of her fear.  I am sure that not everyone is the same, and that not all individuals will react the same to this type of scenario, however, it is important to find that key, find what gives them the self confidence to move forward again.

Because I am her reality anchor, when I walk into the room, she looks at me as though she hadn’t seen me in 20 years.  That look tells me that it is so important that I spend the time with her, rebuilding her vision of reality, assuring her footing on the path, and once again traveling along side her down that scary path.

New Adventures

29 06 2010

What was once scary and almost cruel, has become an adventure.

“Vic, you’ll never guess what I did yesterday!”  She asks me over the phone, “We all went out to some place, for a meeting, and when it was over, several of us decided to just stay the night!  They had a room for me, with my name on the door, and even had it decorated just like my other room, so I was comfortable and safe!”  “I just wanted to let you know where I was, in case you came by looking for me.”  My mother’s voice was clear and full of spirit. She had successfully negotiated an adventure, spent the night out, and made it back home safely.  Who was I to tear that victory down?  “Really?  How fun!  And you handled it all so well!”  I encouraged, “Tell me more about your adventure!”  She went on, like she was telling me about the first day of school.  She was proud and confident.

I had asked her, when her confusion started, did she want me to correct her, or let her believe her own reality.  She told me that it makes her mad when I argue with her, and when I am not on her side, so she wanted me to let her believe her own reality.  So, I do. 

Katie, my 16 year old daughter came with me the other day to visit her Grandmother.  We arrived around dinner time and they gave us our own table to sit with her.  She was having ham and sweet potatoes. I cut up the ham and put it on the fork for her.  Katie uncovered the Jello-with-mandarin-oranges dessert for her.  Katie was a bit surprised at how when she put a little Jello on the spoon, momma opened her mouth to receive the bite.  Katie had never fed her grandmother, and drawing on her innate nurturing side, she carefully helped her grandmother enjoy her Jello, complete with conversations, smiles and commentary.

After dinner, momma said to me, “I am glad you are here – somehow I got over to this place, and now you can help get me home.”  I asked her if she knew whether her room was in this building, and she said yes but on the 6th floor.  Katie was surprised that I played along, actually taking her to the elevator, then going to the ground floor, then back up to the 2nd floor.  When she came out of the elevator, she could find her way to her room with no problem.  Katie was mad with me that I lied to her, but I explained that by arguing with her, it wouldn’t convince her, so by playing WITH her, she felt safe, and content that she was in her own room again.

Thinking back at all the time I wasted trying to re-associate my grandmother (my mom’s mom) with reality, when she was convinced that Lawrence Welk, and his audience were all coming over for dinner! 

I guess the point is, they know their reality is slipping, and they just want to feel confident and safe.  Arguing and trying to reorient her causes anxiety, fear and sadness. 

Now I smile when I get the phone call that says, “Just in case you come by and I am not there, I am in that other room in the other building!” I can smile and say, “Wow, how did you get all the way over there?” and enjoy my mother’s story of adventure.

Cruel Tricks your Mind Plays

7 06 2010

It is so heart wrenching to watch my mother, once confident, once strong and holding MY hand when I was scared or unsure, now holding my hand, lips quivering, and tears rolling down from her lost-looking eyes.  “I just don’t know what to do!” she quietly says, looking at me for some kind of answer. “I can’t find my way home when I go out – They take us out to these luncheons, and then, just leave us there!”  That sounds very scary, dangerous and mean, but the reality is that she has come out of her room, turned right, ventured 150 feet down the hall to the dinning room and eaten lunch.  But she doesn’t know, now, how she got there, and how she will get home.  When they help her to her room, she is convinced this is ANOTHER room, and asks, “Am I going to stay here?”  The reassuring answer, “Of course, honey, this is your room,” is met with frustration, because if she was in another building, or location, why does she have a room?  On days like this, I usually get a call from her phone, an aide has helped her dial my number.  In a fearful, confused and “small” voice, she asks, Vick, can you come here?”  If I don’t go right away, I will get a call about every hour or two until I get there.  She had 3 of these days this weekend. 

I spent about 2 or 3 hours with her each day, and she seemed so much calmer each time when I left, but still, it was a little like dropping your child off at daycare, after they have been scared or hurt.  

I have tried logic, I have tried repetition, I have tried explaining, but she gets irritated when I “argue with her.”   Her mother lived with us my whole life, growing up.  She used to get angry with us, because she thought we were hiding the stairs from her – she had a bedroom upstairs, it looked JUST Like this one, but it was upstairs!  We lived in a ranch style home – no stairs, and my Grandmother was in a walker – Try as we might to explain the logistics of this error, she would just get angry and ignore us.  Funny how she is having the same delusions as her mother.  I have, from time to time, reminded her of “Gram’s” belief she had two rooms, she remembers that, and I say, gently, “You are doing that now.”  She smiles and understands for that moment, but in 5 minutes time, she is back telling me about her other room. 

I have found, that unless she is building a case on her delusion, such as wanting to talk to a supervisor because her room is missing, or wanting to get someone in trouble because they take her out and leave her, I usually just allow her to believe her fantasy.  I have also found that, instead of agreeing with her, I point out how frustrating that has to be to feel like she has gone somewhere strange, when she is right where she always was.  That way, I am bringing reality back, but empathizing with her frustration, irritation and fears.  That is what she seems to like the best.  She doesn’t want me to be right, she just wants someone to understand her frustrations and feelings. 

She says that she has no friends there, when in fact she has made some nice connections.  The problem is, she doesn’t remember, so everyone is a stranger, compounding the “new place” illusion. When I come and sit with her, she gets an opportunity to talk, express her feelings and her ideas, her frustrations and fears.  She doesn’t get to do that with anyone else there.  What ever happened to Candy Stripers? 

Today, is Monday.  She just called me on the phone – HERSELF!  She sounded confident, strong, capable.  It was a page out of a few months ago.  She was going to hang up from me and call her friend she had been missing.  I was amazed. 

I had tried to wean my visits from every day, like I was doing at her old place, to 2 or 3 times a week, but I can see, that that isn’t enough for now.  I work away from the house on Mondays and Tuesdays, so I will go back to Wednesday morning, Friday morning, Saturday sometime, Sunday sometime.  For now. 

It really is cruel how our minds can be so mean, filling in the gaps of memory, confusion and loss with what ever seems right at that moment.  I am really getting a clearer picture on dementia, senility and Alzheimer’s, and why it is so debilitating.