What It Was Like To Finally Say Goodbye

clouds

Superman Has Finally Returned to Krypton

Last Saturday, I visited dad, as I have every weekend since he moved here in 2015. When I arrived, he was sitting in his wheelchair with his head slumped over as if he was fast asleep. I have found him like this before but usually, I am able to awaken him. I tried everything – I took him outside where it was cool weather, assuming he would wake up and complain…I placed his dog, Coco on his lap….nothing. No response at all.

As I left him at lunchtime, I learned from the staff that he had been this way all morning and that they couldn’t get him to eat breakfast. I assumed he would wake up and eat lunch, so I left. I called later and learned that he also didn’t eat lunch, so they put him in bed. From that point on, he never left the bed. He essentially went to sleep and never awoke again.

He went 4 days without food or water before he passed. He was sleeping comfortably, so no morphine was administered until the very last day, when his breathing started to look a bit labored. So at 4 pm they started him on morphine. By 9:30 pm, he had passed away.

My brother visited him at around noon and reported no response at that time. He tried playing Frank Sinatra in his ear…nothing. When I arrived at 6 pm, I saw his breathing had become a little “weird” meaning he was breathing short breaths strictly from his belly. That was when I was told that they had started morphine. At that point, I decided to have “the talk.”

The Talk

I leaned over to him and said “Ya know, you’ve lived a long and happy life. It’s time for you to go. It’s okay. We’ll all be okay. No need for you to suffer any longer. You have my permission to go.” And then 3 1/2 hours later, he passed away. I had heard of others who had tried this approach, so I figured I had nothing to lose. It has been torturous to watch his decline, knowing that I could do nothing to stop this train wreck.  I was happy that he didn’t seem to suffer in the end. He literally appeared as if he just went to sleep and never awoke again.

I was happy that I was the last person to be with him. He and I were a team. I don’t even know what I will do without him in my life. Even though we haven’t been able to communicate in the traditional way for about 1 1/2 years, I knew he knew who I was and appreciated everything I had done for him. I was his cheerleader just as he had been mine my entire life. It was time for him to go.

How Did I feel?

Relieved. Happy. Satisfied. Sad. Elated. Depressed. Anxious.

A mixture of emotions. The truth is, I mourned for my dad with every visit. Every step down in his capabilities, I mourned. I cried countless times after I left him. So many tears over so many years. When the time finally came for him to really pass on, my first emotion was “THANK GOD, HE IS NOW FREE.” It’s ok to have mixed emotions. This has been the hardest thing I have ever undertaken. The most time consuming, the most emotional and the most labor intensive. It really was a full-time job. But I did it. And although I probably complained throughout the entire time, I wouldn’t have changed places with anyone. To have witnessed the full circle of life not only prepares me for what is to come but also was such an honor to have been able to give back to my father, who gave so much to me. R.I.P Dad. Mom has been waiting a long time for you to arrive.

Reflections on John McCain’s Funeral

Senator John McCain lies in state at US Capitol, Washington, USA - 31 Aug 2018 How Lucky Senator McCain Was

I listened to Meghan McCain’s eulogy for her father on my drive over to visit dad today and cried the entire way. What an incredible eulogy! It got me thinking how lucky John McCain was both in how he chose to live his life after enduring such tragedy in the Vietnam War, but also how he chose to and was able to live his last days. He could have come home from his POW experience and had it eat him up inside with anger and revenge, but instead, he channeled it towards helping to make the world a better place for all of us. Now, I don’t agree with everything McCain stood for but I definitely came to appreciate his forthrightness and his ability to acknowledge when he was wrong. I, like the Senator, stand up when I see something wrong and do not worry about what others think. I am, like McCain, a direct communicator. I am proud of that as much as I am frustrated by it when others do not communicate with me as directly as I would like them to.

Senator McCain was so lucky because he got advance notice that his days were ending so he could choose how he wanted to live out his last days. My mother was not so lucky, succumbing to a heart attack in her sleep at the young age of 57. The Senator was able to spend time with all who meant something to him so that he could communicate his love for them as well as how he wished to be remembered. He could communicate his wish for how he envisioned his funeral. He could communicate a strong call to arms for the nation to stand up to fascism and tribalism that is enveloping his beloved nation. In short, he could communicate.

Communication

To be able to communicate is so integral to our identity and self-worth. What happens when you can no longer communicate, as my dad has? Since his fall in May of 2015, his ability to express himself has deteriorated to the point where now he not only cannot express himself at all, but I do not believe he understands what I say either. How must that feel to him? He is alive, his body is still working, but he is trapped inside his own skin, unable to ask for help, unable thank anyone, unable to say he loves me or anyone. I believe he still knows who I am as when I arrive, as sometimes I still see that twinkle in his eye and when I leave, sometimes I get a kiss goodbye, But in between, I get nothing. I think about the McCain family and how they got to say goodbye to John, and how John got to say goodbye to them. It was a full circle moment and as sad as I am sure it was, I have to think the family was at peace. Being able to communicate is so central. To have that stolen from you is no different than solitary confinement, only you are relegated to confinement inside your own body. Senator McCain – how lucky you were. R.I.P

 

Teach Your Children Well

father_and_kid

Throughout our lives, we learn from our parents and I hope that I am always teaching my children, despite them not really being children anymore. Although my father is no longer really able to express his needs or really communicate anything clearly to me anymore, I am still learning from him.

Grace and Gratitude.

My father continues to show everyone he meets that he has a sense of humor about the world and that he accepts what is because he cannot change it. As a result, he doesn’t fight having people help him. He accepts all help with grace and gratitude.

How to Grow Old.

He is old. There is no denying that. At the ripe old age of 91, he has outlived his entire family. He is the last living relic of his generation. Yet, he is okay with that. Even grateful. Whenever I say goodbye after a visit and I say “I’ll see ya later,” he always responds with “I hope so.” He doesn’t take anything for granted. I know he hates bingo and some of the activities they offer in his facility but he participates anyway because, why not?

How to Live The Last Chapter of Your Life With Dignity.

He never complains. He generally is happy. And he appreciates all the help he is given. He loves getting attention, but doesn’t demand it and is grateful when he gets it. He continues to smile and treat people with respect, just as he has always done.

Never Stop Trying.

Despite his body being riddled with Parkinson’s and despite the difficulty he has in getting out of a chair, he continues to be willing to get up and take a walk (assisted) daily. I can tell it isn’t enjoyable for him, but he continues to do it because he knows that once he stops, he will lose the ability to walk. So he keeps at it.

Keep Singing.

In a memory care unit, music is playing much of the time because the brain never loses the ability to retain a song. He will often start singing along with a tune that he hears. It’s wonderful because it is often one of the few times I hear a coherent sentence come out of his mouth.

Here is my hope.

I hope that the example I am giving my own children will resonate with them. I hope they will understand the importance of taking care of family, no matter what happens, no matter the inconvenience. I hope they will understand that it is a privilate that I am able to do this for my father. Sharing these last few years with him, although a huge disruption to my life, will be something I will cherish the rest of my days.

 

 

Who Do I save?

I Cannot Save Him

Caregiving is a marathon, not a sprint. I learned this first-hand, because for the first two years after I moved my father here, I visited him literally every day. I mean EVERY day. For TWO years. I was convinced that if I didn’t visit him and show my presence at the facility where he was living, that he wouldn’t receive the kind of care I felt he deserved. After all, we all know that the squeaky wheel gets the attention. When I started my business, however, I could no longer keep up that schedule and, frankly, it had worn me down. I had no life. I couldn’t go away, Go on vacation without worrying about him. Weekends were never about me or my family, it was always about making sure I got my visit in. It was only when I was forced to curtail my time, that it dawned on me. There was nothing I could do, no matter how many hours I put in.

I wasn’t going to save him.

He has a degenerative disease called Progressive Supra Nuclear Palsy (PSP) and because it is degenerative, every time I see him, I see a little less of him. This disease, when combined with Parkinson’s Dementia (which he also has) has robbed him of his language skills and physically walking has become very challenging. I haven’t had a coherent conversation with him in about 18 months. He is walking less, sitting in his wheelchair more, sleeping more during the day. This is the progression of his disease. It will march on, no matter how many days I visit him.

I am not going to save him.

He still lights up when he sees me. He still knows I am someone who loves him. Sometimes I am his wife, other times I am still his daughter. But I am certain he appreciates my visits. And I am now sure that he appreciates them even more, now that I am visiting less. It’s better for both of us because now when I come, even though we still struggle to communicate, at least I have something to tell him. Even if I am no longer certain that he understands me.

Now I visit him roughly 3 days a week. It seems like the right number. I’m not able to walk him every day like I had been or make sure that he is getting outside when the weather was nice or make sure he is being stimulated with activities. No. I cannot do that anymore. I have to trust that the facility is filling in those gaps. And I am still a very large presence there, even when I’m not there. They hear from me by phone, email and text when I need to tell them something. I am much better off and I know he would want it that way if he could communicate that to me.

I cannot save him. But I think I am saving myself.

The Maze of Medicare

mazeAhh…The Maze of Medicare

Sometimes it amazes me (no pun intended) how I stumble on this information.  I shouldn’t have to stumble. This information should be readily available and it’s not. I hope that, through this blog, you will pause and ask questions when you encounter a situation so you can learn about your loved one’s Medicare benefits in a more expedient manner than I have.

My dad was on Medicare Part A last fall after he came back from rehab after his hip surgery. He was getting physical therapy and nursing services for wound care. When he went into the hospital this last time, I learned about a specialized Physical Therapy practice that had particular expertise in Parkinson’s so I made a note to myself that when he came home, I would sign him up for their services.  What I learned was that because they came into the facility, they fell under “Home Healthcare Services” according to Medicare, which falls under Part B.

You cannot access Part B services at the same time as Part A services.

So I had him discharged from Part A because I really wanted to try out Dynamic Home Therapy, the specialized therapy provider.  I was not disappointed.  They provided superb therapy, both physical and occupational therapy services and went even further to suggest that he look into a different wheelchair. I was exceedingly pleased I had made that decision. Once he was discharged from Dynamic Home Therapy, I figured I would eventually move him back onto Part A for skilled nursing services as he always seems to have a skin tear that requires nursing services.

Last week, I finally got the paperwork together and today, the nurse stopped by to tell me that she would be starting next week and would be providing him with wound care.

And this is the KEY THING SHE SAID: She casually mentioned that when she opens a new “incident report” it comes automatically with 20 sessions of Physical Therapy!

There is no dollar limit like there is with Part B but there is a 20 session limit PER INCIDENT. She can re-certify him every time there is a new incident and, in my dad’s case, simply having Parkinson’s would qualify him to stay on because there is no longer a need to show improvement. And, he pretty much always has some sort of skin tear so nursing would always be able to re-certify him for that. This means he will have ongoing physical therapy. There is an in-house therapy team right where he lives which is convenient. It’s not the specialized therapy that Dynamic Home Therapy provided me, but I look at it as a way for him to continue to get structured one-on-one exercise 3 times a week, compliments of Medicare Part A.

Your welcome for the information.

6 Tips for Living to 90 With Grace & Humor

90_year_old_designs_invitations

Dad will turn 90 tomorrow. As I reflect on a life well-lived, I can honestly say that the way to live to the ripe old age of 90 boils down to these personality attributes. This is what my dad has taught me and more importantly has reinforced for me in the last year when I have been his caregiver.

  1. Don’t worry until you need to worry
  2. Most things pass, so obsessing on something will only cause unnecessary angst.
  3. Be content with where you are in life and look for the positive things about your current situation.
  4. Be grateful
  5. Always find things to laugh about
  6. Even though you are frustrated with your declining abilities, there is always a way to find humor even in frustration.

A prime example of #6.  My dad’s declining language abilities often will mean that he creates made-up words in lieu of the word he is trying to find. What comes out of his mouth can be truly funny. One way to look at that is to be sad and frustrated with his circumstance. What I have found with my dad is that if I can keep my demeanor positive, he reflects that back to me. So one day I suggested we create a Paul Light “dictionary” for all his made-up words.  He loved that idea and laughed at the thought. So every time comes up with a new word, I remind him that it will be going into  the “dictionary.” He laughs every time. (#6 on the list)

Where he is living, at Daylesford Crossing,  is generally a very positive environment.  The staff has picked up on this positivity and reflects it back to him regularly.  As a result, despite his declining abilities, he remains happy and positive (#3 on the list).

Although his cognitive state continues to decline and he has good days and bad days, occasionally he reaches out to me and instigates a hug, or says “I love you” or thanks me. It is on those rare occasions that I know everything I am doing for him has been worthwhile (#4 on the list).

And finally, my dad’s mantra throughout his life has always been “This, too, shall pass” which has meant that he really isn’t a worrier and he doesn’t get caught up in something unpleasant that is happening in the moment because he knows it is temporary. I think this has meant a much less stressful life overall. (#1 and #2 on the list).

Lessons learned.

5 Techniques for Caring for a Dementia Patient

memory-loss

I have been caring for my dad for about 4 years, 3 of which were remotely and the last one locally. Like everyone dealing with caring for a parent or other loved one, there is no advance cramming you can do to prepare for this job – you wake up one day and suddenly you need to be an expert in all things elder-care. It is the ONLY job that doesn’t come with a manual and there are few resources to help you other than learning on the job.

I thought it might be helpful to share some of the techniques I have developed and learned over this time period. These work with my dad, and I hope that they might be useful to you.  Unfortunately, there are over 70 different types of dementias so your loved one’s situation may be different from my fathers, but all dementias have many crossovers, so it’s worth trying some of these techniques.  You have nothing to lose.

  1. Pay attention. Be observant. To everything. I missed so many red flags when he was deteriorating.  I was so concerned with pushing him into assisted living that I stupidly was relying on him (someone who I now know had the early stages of dementia) to tell me when he was ready.  If you aren’t there, every day, then make sure a neighbor is watching out for signs.  Some of the early signs that I DID KNOW about didn’t register to me as signs.  Here they are:
    • Losing the ability to “work” the remote control on the TV; or conversely, saying that his/her TV is broken. Again.
    • Difficulty doing tasks that were, before, second nature.  In my case, my dad could send emails, was on facebook and was pretty “with it” for a guy in his mid-80s. The day I spent one full hour with him on the phone trying to instruct him how to open a browser window, should have been more than a red flag; it should have been a rocket blast. But it wasn’t.  Because I didn’t know anything about dementia.  I thought it was simply, short-term memory impairment.  It is so much more.
    • Impaired judgment.  One day, my dad decided to reheat a slice of leftover pizza. So he put the tin-foil-wrapped slice right on top of the burner and turned the burner on. Can you spell F-I-R-E? Again, didn’t register as a red flag.
    • Word finding difficulties.  This comes with aging for all of us.  It doesn’t necessarily mean dementia, but it is a possible pre-curser.  So if you see signs of this, be even MORE tuned in for other signs.
    • Forgetting doctor appointments or to take medicine. My dad even forgot that he brought his walker to lunch.  After lunch, he went crazy looking for it in his room because he had literally no recollection of it every leaving his apartment.
  2. When you enter the room where your loved one is sitting, make sure you are directly in front of them and have made eye contact.  First offer your hand (even if you plan to hug them next). By offering your hand, you give them time to process who you are. Processing slows down with Dementia.  Their vision narrows and eventually becomes binocular so don’t come at him from the side as you may startle them.  The instinct to shake hands will never leave them and by extending your hand to them, they will take yours instinctively.  Then tell them who you are, even if you think they should know you. And make sure to tell them your relationship.  “Hi Uncle Paul, it’s Bev, your niece.”
  3. Always tell them what you are about to do or where you are going (if you move them). Their world is very scary right now.  They want advance notice of any changes. The fewer changes you can make, the more comfortable they are.  If you never take them from the facility where they are living, they won’t care, as long as their routine isn’t disrupted.  For them, routine means safety.
  4. If you are a healthcare provider and want to take their blood pressure or re-bandage a wound, make sure to tell them what you are going to do and why and then, most importantly, ASK THEIR PERMISSION TO DO SO.  They have so little control left; they want to retain control over their body.
  5. Try to focus your activities on things they can still do.  Music is a wonderful activity as it is retained in a part of the brain that is unaffected by Dementia.  Dance together.  Do karaoke. Play name that tune. Play catch with a beach ball or a football, even from a seated position.  Hand eye coordination seems to stay in place and it can be fun!
I will continue with more techniques in future blog posts, so check back.  And if you haven’t subscribed, please sign up so you’ll get the next blog post delivered to your email. And finally, if you have any techniques that have worked for you, PLEASE SHARE THEM WITH ME!  I am always learning on this job.

 

Trying to Out Run the Inevitable

boulder

Lately, I have felt like I am trying to outrun a boulder rolling down the hill right towards me.  I am trying to outrun it, to keep just ahead of it, averting disaster.  This is the life of a caregiver, but it is particularly evident as time marches on.

In the past month, my father, who has a plethora of health issues, including Parkinsons, Dementia, Aphasia, cardiac problems, now has another couple more to add to his list: Bladder Cancer and another hip surgery because the last one didn’t heal properly. Yesterday I made the decision to go back in for corrective surgery to his hip in hopes that it alleviates the pain he has been in. Before I can take him into the hospital, though, I have to take him to the urologist so he can cauterize the tumor growing in his bladder.  We just found out that he had a tumor and since he isn’t a good candidate for surgery, we opted to cauterize it periodically to try to stay ahead of the cancer growth.  Once he goes in for his hip surgery and then on to rehab, Medicare’s rules don’t allow him to go outside for any doctor appointments, because once you leave skilled, they won’t let you back in without considering it a new episode (which would require another 3-night hospital stay). SO….to avoid that, we are going in to take care of the tumor and then HOPE that it won’t grow TOO FAST while he is receiving rehab because he won’t have another chance to see the urologist for 2 months.

We also have to get him in to see the Movement Disorder’s doc before he leaves for the hospital – he hasn’t been seen by him since last December.  Why? Because he unexpectedly fell and had to go in for hip surgery #1. Need to squeeze that in as well.

Hence the feeling of trying to out chase the boulder.

I am so angry about his hip.  Something to keep in mind if your loved one has to have hip surgery – particularly if they also have dementia.  Make sure you know ALL the details before you agree to anything.  I thought I had asked all the right questions.  When he fell last time, the doc said he would recommend the least invasive type of surgery, where they simply insert screws to help tighten up the fracture he had suffered (his was a non-displaced fracture).  I asked if the rehab would be easier because it was kind of laborious when he had his other hip done, although the outcome was excellent.  He said it usually was.

The VERY IMPORTANT PIECE OF INFORMATION HE DIDN’T SHARE WITH ME WAS that this type of surgery requires an individual to maintain a 50% weight bearing status for SIX WEEKS.  

Had he told me that, I would have told him that this won’t work with someone like my dad, who cannot remember anything.  As a result, the rehab was a disaster.  He was forced to be bedridden for 4 weeks (which is terrible for someone with Parkinsons, where exercise is truly an elixir) and then two weeks later, Medicare discharged him for failure to make progress. Nice, eh?  If the doc had shared that tiny piece of information, we wouldn’t be where we are today, going in for his THIRD hip replacement surgery.  No one should have to go through this, particularly an almost 90-year man. So the moral of this story is make sure you ask about the weight bearing restrictions, or for that matter, find out if there are any restrictions post surgery.  Then make the decision based on what you think your loved one can handle.

 

 

 

The Roller Coaster Ride of Emotions a Caregiver Feels

roller coaster

If you are a caregiver providing support and care for a parent or loved one, then this blog post will confirm what you are already feeling.  I want you to know that you are not alone. If you are a sibling or a relative who is across the country and only checking in from time to time on your parent or loved one, let me give you an inside look at differences in your experiences to those of the direct caregiver.

As you know, I am the primary caregiver for my dad, who has Parkinsons’ and Dementia. Every day that I visit him, and it is EVERY day, I am mourning him. From the time I moved him near me after he fell last summer and fractured his pelvis and, I believe, hit his head, he effectively passed away for me. The father whom I spend time with each day, is not the father  I knew. Although from time to time he pops back in to show himself, for the most part, we don’t have many meaningful exchanges.  His language is completely compromised and I spent most of my time being his advocate and making sure he is getting proper and appropriate care. And I make sure to show him daily that I love him and will protect him.

That said, I mourn for my dad every single day.  It is an ongoing, dragged out sense of loss.  Very different than one feels typically upon the passing of a loved one where the grief is overwhelming and complete.  For me, it is a daily experience.  When the time comes that he does pass away, for me, it will be a celebration.  It will be a sense of relief.  I know that no one, unless you have experienced what it is like to care for someone – on the front lines – you may not understand this.  But it is real.  Very real.

It has been awhile. Lots has happened.

relievedI haven’t posted in awhile.  There is a reason.  After moving my dad back into Sunrise of Paoli around Thanksgiving, it was a great deal of work getting him back into a groove…to a sense of normalcy after spending two months in skilled nursing, in two different rehab facilities. Honestly, I wonder sometimes if he has any clue where “home” really is.

After about 3 months at Sunrise, with no further broken bones, I made the decision to move my dad to a facility down the road from Sunrise, called Daylesford Crossing. This is where I had wanted him to move initially, but because he was out in Iowa and couldn’t be evaluated in person….and because he was coming off of an pelvic fracture, he was a “two person assist,” meaning he needed two people to help him with just about everything. They rejected him.

The one positive thing to come out of his time at Sunrise was he had a chance to fully heal following his pelvic, then hip fracture. He is actually more ambulatory now than he was when he moved in back in August. I took a chance and re-applied to Daylesford Crossing….and he was accepted!

When I toured Daylesford Crossing (particularly now that I had the experience of knowing what assisted living in a memory care unit really was like), the difference was palpable.  The vibe was calmer, quieter.  The staff was infinitely better trained. They had a multitude of ongoing activities for the residents, both in the memory unit itself and within the building (which the residents from the memory unit participated along with everyone else). The atmosphere was vibrant, alive, filled with people having fun.  It smelled nice. I know that’s a silly thing to mention, but Sunrise always smelled a bit like urine. I attributed it to the fact that there were 26 residents, all wearing depends. You should know, however, that it doesn’t have to smell. If it smells, it’s because the staff isn’t doing their job.

The move went smoothly and my dad transitioned to his new home with very little issues. It is a great relief, for me, to have him living in a place where I can reliably expect the staff to take care of him.  I never had the confidence that that was the case at Sunrise.

The internal communication was abysmal. At Daylesford, they use the latest technology throughout the building, using iPhones for all staff, so people are easy to reach and messages get shared easily. You have no idea what a difference that makes to my confidence level.  At Sunrise, I would make a request to one person and they never shared that request with anyone else! There are three shifts of staff!  I ended up doing most of the work which they should have been doing…Making sure he had fresh batteries in his hearing aids, that he was wearing them daily, that he had a handkerchief in his pocket, that he got up to exercise daily…these sorts of things. I wasn’t asking for the moon, but it seemed to feel like I was.

I cannot over emphasize the importance of choosing a facility based on the following very important criteria:

  1. How is the internal communication?  Exactly how does it happen? Do they use pagers? iPhones?  Can you text someone? How often is email checked? What are their systems really like?
  2. Is the facility run well?  Do they review care plans regularly and adjust? My dad NEVER had his care plan reviewed despite his improving condition.
  3. If your loved one is in memory care, how much overlap do the residents have with folks who do not have dementia?  It is important that they feel they are a part of a larger community for entertainment, parties, etc. At Sunrise, it seemed as if the two units operated independently from one another. As a result, my dad was isolated even further.
  4. Look at the other residents who live in the memory unit.  Are they at a similar stage of dementia as your loved one?  DO NOT place your loved one in a community where they are the least impaired. They will quickly sink to the level of who is around them. Look for a community where they will have people who are at a similar stage of the disease.
  5. Look at the percentage of women vs. men.  In many of these communities the population leans towards female. Not an issue on the surface, but it becomes an issue when most of the activities revolve around doing one’s hair and nails and crafts.  My dad was never interested.  Make sure there are activities that your loved one might enjoy. Also – make sure that the activities are MODIFIED for those who have dementia. If you see the list of activities and they include crossword puzzles, bingo and more traditional games you might find in senior living centers, just know that these are not going to work with someone with dementia.  They have to be MODIFIED. This requires that the staff have REAL training in dementia.  At Daylesford, all staff are trained in the methods of Teepa Snow, a well-respected dementia expert.  Who does the staff training? What kind of training is it? Dig under the covers a bit.
  6. Look at the size of the bathroom.  Look at the shower.  Is there a lip on the shower that requires someone to step over?  Better to not have that. It can become an issues as they decline. The size of the bathroom is critical for someone who uses a walker or wheelchair.  My dad’s bathroom at Sunrise was so small that it was a real chore getting him in position to sit on the toilet because there was never enough room for the walker.
  7. Come several times to visit, at different times of the day. Are the staff interacting with the residents or talking amongst themselves. This was a real issue at Sunrise.  Most of the time, staff was sitting around a big table chatting with other staff, while the residents watched TV, which, as it turned out, was the main activity in the memory unit at Sunrise.  Even though they posted other activities, often those activities were never done. If you see a place with the TV on all the time, that is not a good sign. Do they have lots of music?  Music is something that can be enjoyed by everyone, even those in the latter stages of dementia.
  8. If you notice people are spending a lot of time in their rooms alone, this is not a good sign.  People with dementia cannot safely be left in their room alone for long periods.  They no longer understand what is safe and what is not.  Often they can be quite impulsive, in fact.
  9. Find out if there is a dedicated med-tech for the memory unit.  This is important as you want it to be easy to find this person if your loved one’s medicine is late in arriving.  Because one of my dad’s medicines needed to be given on time, I spent many hours wandering through the floors of Sunrise looking for the med-tech and because they did not have technology to reach the staff quickly, I was often given this response when I asked where the med-tech was: “Oh…she just went downstairs, I think.”  It was then up to me to find her to haul her back to give my dad his medicine, which I was paying them to do.

I hope this helps you as you evaluate facilities and that you can learn from my mistakes. I am so happy that I found a facility that is well-run, my dad seems happy and most of all, I believe he is finally being well cared for. If you have any questions for me about what to look for or if you are worried about what you are seeing, please feel free to post in the comment section.  I am happy to help guide you, if I can.

Ciao!