Confessions of a Naive Young Caregiver: Lies Not to Live By

With hope that this saves newer caregivers a bit of stress, or at least the comfort of knowing someone else can relate to the same goof-ups, here are a few biggies I seem to be learning over and over the painful way:

~Your partner, best friends, and close family who you expect to understand your caregiver angst and be there for you, won’t quite get it.  They usually won’t know what you’re expecting or need from them… 

…..unless you tell them explicitly and remind them. 

I hate this! 

I want them to be able to just be there and know how to comfort me, but unless you’re really lucky to have a very intuitive or similarly-experienced support person in your life, you have to teach people who care about you about this new part of your life and how it affects you. 

Taking the time to explain all this can be exhausting, so sometimes you need to lower your expectations and get support from strangers who are already in the caregiver mindset/loop at a support group or online forum.  That’s one reason I started this blog.  I had so much pent-up emotion and desperate need to share and connect regarding all these new issues in my life, but felt frustrated that my close people couldn’t quite relate, as much as they wanted to help.

~Write down what doctors and nurses promise to do for your loved one and put it on the calendar to remember to check that they actually followed through .

These professionals have great intentions and WAY too many patients.  I was not unaware of their struggles, but we have had so many things fall through in the last month: phone conferences, prescriptions, referrals to specialists, etc. because in my mind I’ve been delegating certain tasks to them.  That was wishful thinking.  I need to help walk them through the promised tasks and follow-up afterward to be sure all the bases were covered. 

~In many cases, the residential people we pays lots of money to take care of our loved ones need the same type of “management” as described in my doctor/nurse comment above. 

They’ll promise you the moon when you sit in the sales offices, and you know somewhere in your gut that none of them will ever be able to do half the things they say your loved one will enjoy if you choose them, but oh, how you want to believe!  You’re emotionally and physically exhausted, yearning to resume some semblance of your work/family/love life, not to mention trying to wade through all the paperwork, bills, and legal issues that have suddenly fallen in your lap.  You fantasize about being able to have a few days to yourself because Mom will be so busy enjoying the tantalizing activities, spa baths, gourmet meals, and all the lovely things being described in the shiny brochure. 

The dumb section of your brain that ignores that the spa room is never in use when you walk by, the actual menu in the dining room seems to have 7 variations on hamburger helper for the week, and the residents who are supposed to be engaged in activities are asleep in their chairs.  If you can’t get feedback from a family already living at the facility, do as much unannounced snooping as you possibly can, and don’t second guess any pangs in your gut or strange feelings you have about ANYTHING.  Those feelings will be magnified once your loved one moves in. Keep asking hard questions, write down the answers, and show the salesperson your notes and ask if everything is writing is accurate.  

~Long-distance family members and friends often genuinely want to help, but it’s hard to get their support if you’re not really specific about what you need.  They rarely can do much to lighten the load unless you delegate super-specific, manageable tasks

If you’re fortunate, they’ll offer to call and send letters and will tell you to ask if you need anything, but the calls and letters will cease pretty quickly when they don’t get responses, and needing to take time to call people and ask for help each month is not only difficult, but time-consuming. 

You need a system in place so your loved one’s support people can delegate themselves and you don’t have to think about it.  Ask for each person who offers help to pick a specific day to call, so that contacts are spread out over the week, and so it’s easier for it to become a routine. 

If you ask for specific dates for helpful visits, like on your parent’s birthday or for a specific event in town like a garden show or state fair, the promised visit will be much more likely to actually happen.  Saying “Mom would love you to visit” or “Come visit soon!” just doesn’t seem to work as well as using a tangible, defined period of time.

What’s something you found out the hard way as a caregiver that could save someone else a lot of pain?

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2 Responses to Confessions of a Naive Young Caregiver: Lies Not to Live By

  1. Katie says:

    Nursing Home Experience~And NEGLECT!

    As time goes on since my mothers death, I realize that I need to write down and share the Nursing Home Experience. I do this as away to realize some of my anger, now that I am able to face it, as well as warn and educate others that are or will face putting their parents into a Nursing home.

    My mother had a stroke in May of 2003, which left her speechless for awhile, as well as paralyzed on her left side. After her hospital stay, we were encouraged to put her in a Nursing home where they had everyday care for rehabilitation and physical therapy. Reluctantly, we did this. Before her children did so, we search the Internet for hours and days on Nursing home care and the roles we needed to play in this. The Nursing home experience turned out to be horrible regardless, but thankfully, what we learned helped us, as well as her along the way. Also, my sister and I were able to be with her everyday, and stood up for her since she could not stand up or speak for herself.

    We were able to visit everyday, but not spend the night, in the first home we had her in. The first morning she was there, I went to see her right away. I got there at 8:30 that morning, and was alarmed to see her in her bed with a cold tray of food sitting in front of her, utensils still wrapped in the napkin. Breakfast was served at 8:00. To say the least, I was angry. Very angry, as we had talked to the staff in detail of her problems, her needs, and the support she needed. From then on, we were there at all her meals, except at the very end of her time there, as she was able to eat with some assistance, and the facility knew if a problem arose, there would be problems with her children. And all and any time away from her, we utilized our research about care concerning her and elder care. One thing we learned was to always date, document, write notes, list the care workers, their names, their shifts, and so much more.

    Even with my anger though, (which went on a lot) things never seemed to get better. Our daily journals were filled with pages of what went on with her and her care. One day I came into her room and she was on the floor. They had left her in her wheelchair alone, and she had slipped out of the chair. According to records of when last checked on her, she could have been there a long time. Her leg was scrapped and her nose was bleeding. I was fit to be tied. Again I marched up to the front desk with my anger. Trust me, the front desk was getting real tired of myself and sister Delia, as it seemed all we did was bitch. She could not bitch, so we did. She deserved much better than she got. Then one day, a worker took her to the bathroom, and left her there. She fell off the commode onto the floor. And today I have bad dreams about how long she was on that floor before she was discovered. As it turned out, she fell from her chair two other times. So, we told them that if they were going to leave her in her wheelchair when we were not there, to put her in the day room where the front desk is so she could be watched. As this turned out, they can fall from their chairs right in front of them, as they are not even looking. I came in one time, and a man was already on the floor, and she also had almost slipped out of her chair, in the same room as the front desk.

    I know a lot of people reading this are asking “Why did you have her there, why did you not move her elsewhere? What kind of Nursing home was this?” To answer this question, we spent several hours looking at homes and referrals from doctors and others. Sadly, this is a typical nursing home, and this type of problems go on in all nursing homes pretty much, unless you are rich and have care there for the patience (sitters) at all times. The employees are overworked and under paid, and the turnover rate is awful. I have done extensive research on the Internet, and Nursing home problems are extremely high, and reports of Nursing home neglect care is not reported as it should be. And I understand why. Sadly, it is looked at with blind eyes. And the children are so tied up with taking care of an aging parent while still trying to carry on and maintain their own lives and responsibilities.

    I recently just found out from a lawyer that you cannot report or sue a Nursing home after the parent has died. I was astounded. It took me a long time to get over the grieving of my mothers death to finally reach the stage of anger to report the problems. And I was doing it for her and other helpless elders. This is a very sad problem and needs to be addressed. So, if any readers are having problems with Nursing home care, take time to make an issue of it. Don’t wait until they die. Even with all these problems, my mother did improve some. I really think all the visits from her children, and we never missed a day, as well as the physical therapy helped. She did regain her speech and partial use of her arm and hand. And, in answer to the question of moving her, we did. Another disaster.

    My sister and I moved her to an assisted living home. We looked at everything, made visits, talked about programs, told them of her special needs, and her problems. Trust me, it was a total sales pitch with them. All smiles and how well she would do, how great the help was, physical therapy, on and on. The place was very nice. The place was beautiful, and the rooms were like little apartments, and nice things to look at or do. It is funny now, when we look back that all the nice rooms we were shown, such as the sun room, library, TV room, no one was ever in there. We fixed her room up with all her favorite things. We wanted her to feel like she was home here, and that we would visit all the time. Since she was paying for a small apartment pretty much, we were able to spend the night if we wanted. We set up for a laser beam should she start to get out of bed, as there were now no bed rails. We got her a necklace where she could push the button if she needed help to alert them to come right away. After we left that first day of settling her in, we walked thinking things would be OK with her, but there was trepidation in our steps. I can still remember my sister turning to look at me in the car and saying “You are frowning. You are worried about Mom.” She was right. I was worried, and as it turned out, I needed to worry. That very first night, Mom wanted a sit up pillow on the other side of the room. She forgot she could not walk, and got up to get the pillow, only to fall. She broke and fractured her pelvic bone in three places. She did alert them with her button on her necklace, but to this day, I have no idea how long it took for them to get to her based of me hitting that button myself several times after that, once she returned from the emergency room.

    She did go to the hospital that night, and the doctors said that the way the break was, it could heal, but there was not away to set it. They sent her back to her little apartment. That was the last night that she spent alone there. Delia and I arranged our lives to be with her 24/7 there from then on. Thankfully, we had understanding and caring husbands that understood our shifts with mom. And being there 24/7, we were able to see real problems with this place, and I am sure it is not a monopoly. Since she had to be in bed, and not go to the dining room, we became alarmed. They forgot to feed her. She would have faced total neglect I think, had we not been there to speak up for her. We had to go to the dinning room and ask for her meal many times. We had to remind them that she needed a bath. She would complain that she wet herself and we made her push her button, or we would push it for her. Many times with me, it took over an hour for them to come to her aid. And I paced the floor or went to tell them, she needs help. My sister was able to help when the help she paid so much for did not come. But I was not able to, due to a medical problem of my own, and not being able to lift more than 10 pounds. Now this place hated us, as we stuck up for my mom and made issues of improper care and neglect. And when most care giver employees came to bath her or change her, they moved her as if she did not have broken bones or as if she was not hurting with the moves. It was heartbreaking. And our voices of concern or feelings of how they moved her almost made it worse. They tossed her around like a rag doll as she screamed in pain. And her pain only got worse. We took her back to the hospital for pain management. They put her on all kinds of drugs to help her and told us that she needed her medication when if in pain or prescribed. And sent her back. Meetings were made with the staff again on her condition and her medication. And they were totally ignored. She would be in pain and so we buzzed for her medication. No response. We would buzz again. And again. Finally, my sister or I would go find help, and they would reply they would get to her when they could. Sometimes it would take an hour for her to get pain medication, while she fought the pain. And when she did get it, it was brought into the room almost with anger.

    Anger flared with our care and love and looking out for our mother. And their anger flared also. Why theirs did, I am not sure. But, it did. We all came to agree to remove her to my sisters home. She died three weeks later.

    And for those that are or will be facing this, as many baby boomers do, I am only trying to make a point of the problems that you will face, or are facing. And it is so sad that our parents, or someone’s parents go through such things. How sad that the ones that taught us, raised us, loved us, was someone important, ended up suffering and neglected. I guess I am still speaking up for her, and others in the position she was in, as well as the position we were in. Our position was out of love and respect and treating her that way, and proud that we did. And, one day, each of us that read this, might be in her position also. Who will protect us if we cannot protect ourselves?

    Readers, if you are faced with such a problem, make a voice. And document, document, document. Not only for yourselves, but for the victims of Nursing home neglect. They deserve so much better. After all, they are or were our parents, and our stepping stones of our past. Something really needs to be done concerning this. (this was written in 2004)

    Katie

    • Wow, Katie. That sounds horrific.

      So sorry your family had to go through all that, and that you still live with the pain of it all.

      I’ve heard similar stories with nursing homes (but not quite as sadly tragic as yours), that families feel they need to be there constantly to advocate.

      It was a somewhat similar situation when my husband was in the hospital a few years ago in really bad condition. The shifts change so frequently and the staff are so tired and overwhelmed, that even the nicest people with the best of intentions would make scary mistakes. (The wrong drug, the wrong dose, forgettting to make a change the doctor ordered, forgetting to shut the door from the loud, loud hallway so he could have a bit of quiet to sleep. Forgetting a food allergy, leaving him laying there when the IV had completely run out and was beeping a warning alarm deafeningly loudly in his ear, etc.) The in-laws and I ended up taking shifts sleeping in his room so he would never be alone without a voice to speak up for his needs.

      I’m not sure there’s any substitute for a family who cares, unless, like you said, you’re fortunate enough to be able to pay for the one-on-one support with an independent caregiver who monitors the ones you’re already paying and provides all the extras.

      It’s a really crazy system, and with the way elder care will be increasing population-wise in the next few years, our country has a lot to work on in a very short time.

      Have you thought of going into this field to try to improve things? Sounds like you’d be great at it, knowing all you know from your experiences.

      Take care,
      Meg

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