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.

 

 

 

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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.

Dementia and the Art of Improv

Think_Fast_Improv_Skills_site

Improv?  Yes.  Now that I am extremely experienced in the world of Dementia, I have observed how important the skill of improv is to my interactions with my dad.  A bit of background first…my dad not only has Parkinson’s Dementia but also has Aphasia, which is simply that the language center of his brain has been impacted.  He can no longer communicate in a way that makes any sense.

For instance, this sentence may come out of his mouth “It was really  interesting today.  The thistle came out of a grain and was car.”  Or, “did you see the biddle up the nickel?” Most of the time, I have no idea what he is trying to say to me.  But he clearly thinks he is communicating something and would like a response to either keep the conversation going or to answer his question.

The technique I have used is very much improv at its core, which is based on the concept of “Yes, and?”  Most of the time I answer with “really! Tell me more!”  And that gets him to continue talking.  I feel as if I can get him to continue to talk to me that is a win.  He feels as if he is expressing himself and occasionally I can decipher what he actually means, through context, and we can have a meaningful exchange.  Some days are better than others.  In fact, one day recently, it was as if he had an awakening of sorts.  He was making connections he hadn’t in awhile, remembering facts from the previous day, which is next to impossible for him typically and was able to talk on the phone with relatives fairly easily, again not typical. It was short lived, however, as it usually is, and the next day I was back to using my improv skills.

I am so lucky that my father has a pleasant personality, still smiles and laughs at himself and the staff where he lives generally enjoy him.  That, unfortunately, isn’t typical with Dementia.  I am hopeful that his personality will carry him through this terrible disease and that he will be smiling and laughing until the end

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!