Teach Your Children Well

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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.

 

 

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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.

PROS…and…CONS of Assisted Living

IMG_0828.jpgI couldn’t resist putting this FANTASTIC photo of my dad and me and in this post.  When the going gets tough…and with a progressive neurological disease, it gets tougher each day, I try to remember the good days. This was one of those.

Today was one of those days that reminds me that there are great things about assisted living facilities and not-so-great things. It’s a good to always remember that it isn’t going to be the same experience as if you were taking care of your loved one. And that can be a GOOD thing because, as is the case with my dad, I couldn’t possibly handle his needs because he requires complete 100% care.  He can do nothing for himself at this stage. If you are thinking about whether to place your loved one in a facility or try to cobble together aids to help your loved one stay in his/her own home, let me give you some frontline expertise.

In an assisted living facility, there is a community.  People need to be around others.  They need to feel as if they are part of something bigger than themselves.  Even if they no longer communicate or independently move about the planet, just having others in the room, having activities going on and other types of stimulation will add years to your loved one’s life.

And beyond years, it will add life to those years.

If you find a place, as I have with Daylesford Crossing, where the staff truly love being with the residents, it rubs off.  Today I witnessed two staff people singing at the top of their lungs as they walked down the hallway.  They were having fun and when the residents see that joy, it transmits to them. I have seen it in action.  One day, the music was on and the woman who is in charge of keeping the rooms clean was literally dancing with her mop to a Motown tune. It was hysterical! When shopping for a facility, try to come at different times of the day and catch the staff who work the different shifts. It will give you a good feeling as to whether this is a place that people come to live…or to die.

Now…the cons of living in a facility.

I have to remind myself that this is not a nursing home.  I specifically did not want to put my dad in a nursing home until it was absolutely necessary. So I cannot expect nursing home care in an assisted living facility. This means that I have to be more vigilant, have more of a presence so that when there is a shift…a change in his behavior, his mobility, or his cognitive abilities, it will probably be me who will see it first. Even though others may notice something unless it is a really BIG change they are not likely to mention it. Why? Because they have (in my father’s case) 18 others they are caring for and there are multiple shifts caring for these people. You’d like to think that they are attentive, but they just cannot be as attentive as you can be.  So don’t assume that by placing your loved one in a facility that you are off the hook. You absolutely need to be present as much as you can so you can notice these types of changes.  Don’t assume they will tell you (they might…but it might be 2 weeks later than you would have noticed).

This week’s events showcased this perfectly. Beginning on Monday morning (3 days ago) I noticed a change in my dad’s abilities.  He was sleeping way more than usual during the day. He had a great deal of difficulty rising from his wheelchair to walk (something he did twice a day, for exercise), really couldn’t walk at all and cognitively he was more confused.  His vision even seemed worse.  I chalked it up to maybe a bad night sleep. So I said nothing. I came the next day in the afternoon to see if there was any improvement.  There was not. Same thing on Wednesday.  I finally started asking around. It turns out the exercise physiologist who works with him to assist him on his walks was having the same difficulty as I was.  Also, the several CNAs who work directly with him caring for him also noticed a change.  No one said a word to me. As I collected my data, I saw enough to concern me.  So I called his doc who suggested getting him assessed.

We did that today and the nurse does not think it is a neurological issue; she thinks it might be as simple as a UTI (something he is prone to get). I normally can tell when he has a UTI because his behavior gets combative (not his usual personality). I wasn’t seeing that.  Apparently, a UTI can show symptoms like I was seeing….so we are off to collect a sample and see what it shows.

The bottom line is I went through an emotional roller coaster these last few days thinking the end was nigh because I thought he may have had a TIA (a mini-stroke) or some other neurological mishap.  I still don’t know for sure, but I feel more confident that it might just be a UTI.

If I hadn’t raised the red flag up the pole, this would have gone on for another week or two before it got REALLY bad.  So, the message is:

STAY VIGILANT.

 

Caregiving: Preparing For The Next Phase

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Sometimes when you are in the daily grind of caregiving, you become numb and forget to think about preparing for the next phase.

When you are dealing with a progressive disease, as my father is, each day you lose a little more of your capabilities.  The changes are tiny and only if you are paying attention might you realize what is happening before your very eyes.  I notice it only when I stop and reflect back, and then I see that progression. This week, I did a bit of that reflection as I was looking through photos from the last year on my computer. A year ago, my father was still at Sunrise of Paoli. He had just come off of a fall and had completed his rehab for a hip replacement. It was around this time that I realized that I needed to move him;  I realized that the place he was living was really not meeting his needs.  I also remember that at that time, I was able to communicate with him most of the time.  Yes, he had difficulty remembering anything short term, but if I kept my sentences short enough, we could communicate.

A year later, I am seeing fewer and fewer of those meaningful exchanges.

His ability to communicate is almost non-existent, although he doesn’t realize it so he continues to “talk” to me and I continue to do “improv” with him.  We “talk” but 95% of the time I have no idea what he is trying to say. I continue to “talk” to him as I want him to always feel he can express himself and I am hoping through my improv skills I make him feel as if he is communicating with me.  He is still able to follow simple directions, which is great.

However, I need to start planning for how I am going to handle the next phase of his disease.  I predict that at some point he will give up trying to talk either out of frustration or because he no longer has the wind power to push his words out (another side effect of Parkinson’s is that your voice gets very very quiet). I have been testing out strategies for this next phase. And what I have found is that there is a tremendous amount that can be communicated through touch.  When words fail, I often just reach out and hold his hand.

It is electric.  I instantly feel the love flowing freely in both directions.

Sometimes I just massage his shoulders and I feel him relax and moan in glee.  This weekend I bought him a massage.  I found a therapist that specializes in prenatal and geriatric massage. He was in heaven. And, I’m told, he was able to verbalize his happiness to the staff all afternoon.

So when the going gets tough….and it will get tougher, it is important to start thinking about that next phase. The next phase may, in fact, be more rewarding than the prior phase.

 

6 Tips for Living to 90 With Grace & Humor

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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.

The Roller Coaster Ride of Emotions a Caregiver Feels

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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!