It Really Does Take A Village

village

This is a marathon, not a sprint.

The average length of time that a caregiver takes care of a loved one is 7-8 years. Most caregivers go into this experience thinking it will be for 2 years.

This is more like a marathon, not a sprint. I began taking care of my dad remotely about 3 years before I finally moved him out East. Most caregivers, including me, set off down the path of caregiving without much thought.  Of course, I will take care of my dad. He was a wonderful father and gave so much to me and to his community.  He deserves nothing but the best. Without thinking about the long-term consequences of that decision, I moved him out East to be closer to me…and assumably to be closer to his two sons and his niece and nephew who are up in the Boston area.  Surely being closer to all of us would be a good thing. He would get to see them more often because they aren’t as far away.

I knew that I would be doing the lion’s share of overseeing his care because I am the only one local, but I also assumed that my siblings would pitch in and help with this monumental job of taking care of our father. One of my brothers set up a secret facebook group which allows me to privately post status updates on how dad is doing, to post videos of him, keeping all of them in the loop on how dad is doing. I regularly update it and it is a better way of communicating with so many interested parties than to be bombarded with phone calls wondering how he is doing.

HOWEVER

I believe this facebook group has enabled my two siblings to become complacent. They see how well dad is doing and are able to keep up to date on his progress remotely. It is further exacerbated by the fact that dad really cannot communicate on the phone anymore so they cannot call him to keep that connection alive.  They really need to visit him in person. And to really see how he is doing, they need to visit for a few days, not a few hours a couple of times a year. Every day can be different with the Dementia experience. On one day dad could be pretty verbal for a short time and then be unable to communicate the rest of the day.  If you pop in for a few hours, you may catch him on a good day. This is wonderful, but it doesn’t give you a true sense of the magnitude of the job of caregiving day in and day out.

SO WHERE DOES THIS LEAVE US?

If you are not the direct caregiver because you live out of town, that does NOT let you off the hook of providing care for your loved one. What it means is you have to help in other ways. You should be calling the direct caregiver regularly and asking them how you can help. You should be doing things like sending notes thanking them for taking care of dad and telling them how much you appreciate it. You can be sending short notes to your father letting him know that you are thinking of him (since he cannot speak on the phone).

You have no idea how much of a sacrifice this is for the direct caregiver and their family. Unable to work, the family sacrifices current income and is not able to contribute to their own future retirement. Vacations become difficult to manage because you are your loved one’s voice and their advocate.

A large percentage of caregivers do not survive the person they are caring for. This is a highly stressful experience, both physically and emotionally.

I have it much better than someone who is caring for their loved one in their home because my dad is in an assisted living facility. However, that facility is taking care of just his basic needs. To care for him as he deserves, there is much more to be done. I am there 6-7 days a week normally. I spend hours with him. Most of the time he cannot communicate, so I am his advocate. I make him feel connected and feel like he is communicating (even though he does not make any sense) by doing improv with him (Oh really?  Tell me more!).

I walk him and do stretching exercises with him. These are just the basics.  Then there are all of the doctor appointments that can sometimes kill a half a day. Because of his mobility issues, I sometimes have to enlist my husband to help get him to the appointments, so now two of us have killed half a day.

This is what caregiving involves:

  • Medicare advocacy
  • Doing his laundry
  • Managing the inventory of his medications
  • Taking him to doctor’s appointments
  • A daily commute (sometimes more than once a day)
  • Trips to the VA in Philly
  • Trips to the VA in Coatesville
  • Fixing his wheelchair
  • Managing his hearing aids and batteries
  • Management of incontinence supplies
  • Healthcare advocate (acting as the liaison between about six doctors, none of whom communicate with each other as that is how our healthcare system is set up)
  • Parkinson’s expert (staying up to date, participating in webinars on the disease)
  • Paying his bills
  • Shopping for him (new clothes as his trousers frequently rip from people grabbing his waistband to hoist him to a standing position)
  • Constantly thinking about new ways to stimulate him mentally
  • Researching and finding specialized therapy, and being at every single therapy appointment (because he cannot communicate for himself and he tends to participate better if I am there)
  • Researching and locating a geriatric massage therapist and being at each massage to facilitate
  • Monitoring how he feels since he cannot easily tell the staff when something is bothering him, but I can tell
  • Figuring out the logistics of transporting a body interstate and pre-paying for his future funeral…and there is probably more that I am not thinking about.

I UNDERSTAND THAT YOU HAVE BUSINESSES AND JOBS.  I GET IT.  BUT YOU ALSO HAVE A FATHER.

You are missing out not only on the opportunity of spending time with him, and the rewards that come from knowing that you helped to take care of your dad after all that he gave to you. And you are also fracturing your future relationship with your sibling, the one who has shouldered most of his care.

I want to be clear, one of my brothers has been generous and recently took me to see my favorite artist perform when she was in town and sent me a gift card for a massage about a year ago. My cousins have each visited a couple of times.  My step brother and sister-in-law have visited a couple of times for short visits. For that I am grateful.

What I need is more than that.

Let me be brutally honest.  I need a week off.  I need a few days off now and again.  Not once a year, but periodically. I need my siblings to step it up and participate in the care of our father. Last night, I attended a session on caregiving sponsored by the facility where my dad lives. The examples they gave talked about how one sibling did the majority of caregiving because they were local but the others alternated visiting every few weeks to a month to give that primary caregiver a break. A break. What a novel concept.

I appreciate the fact that they came to dad’s recent 90th birthday celebration, but again, they came for 2 1/2 hours and then left to go home. That is not helping in the caregiving.

This takes more than a village. It is more than a full-time job. I want my village to wake up to the reality of what is at stake. This crisis in our family can either make our sibling relationship enriched and stronger or it can tear it apart.

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.

 

Keeping Up My Stamina Is Difficult

staminaThis is, hands down, the most physically and mentally draining task I have ever tackled.  Taking care of my father, a 188 lb guy who is practically immobile and mostly cognitively gone is difficult for anyone.  When you are doing it single-handedly without any additional help, it can seem overwhelming at times. It becomes a test of who has the most stamina – my dad or me.

Some days, it is a toss up.

With rarely a day off, I visit him 7 days a week. My shortest visit is around 90 minutes.  Depending on whether he has a doctor appointment of other needs, which can stretch into half a day. We do the same thing day in and day out.  I stretch him, both his legs and upper body.  Then I get him out of the chair and have him walk, assisted, for about 250 feet.  Then we stretch a bit more.  Then if the timing works out I bring him to the exercise activity where they throw and kick a beach ball around. Then I get him set up for lunch. If I come later in the day, rinse and repeat above, except I set him up for dinner. Three days a week, one of the in-house exercise physiologists comes and walks with him so I am less pressured to walk him on those days and then we just sit together or carry on a fake conversation. I say “fake” because on my side of the conversation I am doing improv as I have no idea what he is trying to say. On his side of the conversation, he thinks he is having a conversation with me, but he literally makes no sense at all. It’s an out-of-body experience. Truly.hich

Today, he could barely get up out of his chair. It was exhausting. He was exhausted, so I transferred him into the bed for a nap. After a 10-minute cat nap (his specialty), I then had to get him back into the chair.  This is no small task for a large man like he is.  He weighs about 53 lbs more than I do these days.

So how do I keep up my stamina?  I work out 4 times a week.  I lift weights and also walk his dog and mine twice a day up and down the nearby hills. I try to keep my mental stamina by focusing on the present ONLY. If I even start to migrate to the future, I stop myself. Right now is all I have. I don’t know what the future will bring and I can only impact the present. So that is what I try to do. That’s all I can do.

If you know anyone who is taking care of a loved one, particularly one with Dementia and/or mobility issues and you are wondering how you can help them?  Here’s how. Pick up the phone and ask them what day they would like to take off. Tell them that you have their back and you’d like to spend the day with (fill in the blank). You would be helping both the elderly person and the caregiver more than you realize. Until you have walked in these shoes, you cannot realize the toll it can take on a person.