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.

 

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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!

Shopping for an assisted living facility

Dad's final (I hope) address
Dad’s final (I hope) address

When you are dealing with a sudden crisis, like a fall or, in my case, a cross-country move, time moves in lightening fast mode. You have to, very quickly immerse yourself in what an assisted living facility offers, how different they are one from another and hone in on exactly what YOU are looking for…all the while understanding that you will never find everything you want in one place.  There will be a bit of self-talk where you negotiate with yourself over this and that, and in the end, you will feel as if you are putting your parent in the best place available to you.  That last sentence is critical, because where you WANT your parent to go isn’t necessarily where they will ultimately be able to go.  Many things go into this decision and not all of them are yours.

My dad had to be evaluated by the facilities we were considering (all of them doing so, long distance).  Long distance evaluation automatically builds in a very conservative approach by the facility doing the evaluating because no one wants to say “yes” to your parent and then when they arrive, find out they really can’t meet their needs.  There really isn’t a substitute for in-person evaluations so if you are working with a facility with a national footprint, they may be able to send someone to see your parent from a nearby facility.  Push for this if it’s available as that is the only realistic way to get an accurate evaluation.

What I will say is Sunrise of Paoli evaluated my dad over the phone and took a risk on bringing him to their facility.  They have been very good at working with me all along the way, to make sure my dad’s needs have been met and never once gave me an indication that they mis-evaluated him.  I never felt that he was at risk of being shipped to a nursing home (which is the next step).  Sunrise’s philosophy is more of an “age in place,” meaning that unless he needed a durable piece of medical equipment like a ventilator or respirator or feeding tube, he could stay here.  I took comfort in that because my dad’s living will stated that he wanted none of that anyway. So if we got to that point, I would call in hospice.

The journey to finally settle on Sunrise was a very speedy evaluation of about 7 other types of facilities.  It involved taking tours, talking endlessly on the phone with sales directors….all in the course of about 7 days because the rehab facility my dad was in gave me about one week notice that he was being discharged, so I had to move fast. Best advice….start thinking about this stuff BEFORE you need it, so you don’t feel pressured to make a fast decision, as I did. Other piece of advice….don’t wait until a crisis to move your parent closer to you.  Even if they don’t want to move, if they have assigned you as their health care proxy, you need to have them close by to do that job effectively.  Don’t wait until they are so frail that a move becomes impossible or difficult.

Back to the facility. There were ones I liked a little better, but at the end of the day, Sunrise was the only place that would allow what’s known as a “two person transfer.”  A two person transfer means that an individual needs two people to help him/her get out of a chair, into the shower, onto the toilet.  Apparently, this is a biggee.

In Iowa where my dad was living, once you were a two person transfer, you had one choice:  nursing home.  I refused to allow that, which is why I moved him to Pennsylvania, not only because he’d be close to where I live, but also because the laws in Pennsylvania were different.  In this State, there are four levels of care, not just three as in Iowa.  In Iowa, there was independent living, assisted living and skilled nursing. Once you needed two people to help you, you ended up in skilled nursing. In PA, there is independent living, personal care, which is similar to assisted living in Iowa and then assisted living. Here, in assisted living, there are SOME (not all) facilities that will accept a two person transfer.  Sunrise is one of them.  Thank God.  Sunrise is a lovely community with really great staff and the environment is decidedly not institutional.  Are there things I wish were better?  Of course.  But overall, it has been a positive experience.  And the best part?  He lives a matter of blocks from me, so I can visit him and help on a daily basis without having to provide the bulk of his care, which at this point would be too taxing for me.