Disliking who they’ve become

For caregivers, the transition time from when their loved ones begin to show clear signs of dementia or other severe memory loss conditions, is the most difficult part. The biggest thing, for me, during this time is to remember that you are not only dealing with their personality changes but your own as well. Especially if you have been very close to this person for your whole life. Your perception of who that person is or was is really what affects you the most. There are always going to be parts of you that are going to be selfish in your desire to have them behave the same as you remember or be the person you perceived them to be. The thing is that you only know as much as they have allowed you to see over their time with you. NOW you are with them or at least paying more attention to their every move or every word. 1. That is tiring for you. 2. How would you like someone watching you 24/7? They are scared, confused, frustrated, and generally exhausted about trying to be the person they have always been. Think about how you present yourself to others vs how you feel about yourself internally. Now, Invision a wall that stands between the person you are, say, at church, or in a meeting with your boss, or with your best friend hanging out, or even the person you are when someone jump scares you in a dark room. A wall between each version of you. When you are young and able to control your thoughts and reactions your mind will just open the correct door whenever that version of you is appropriate, whichever version suits the environment you are directly involved in. NOW, take down all the walls! It's constant mayhem! Every version of oneself, more appropriately spelled one's self as each are separate and different, all fighting to be at the front of the line because the part of you that opens and closes the doors is gone. This is obviously an exaggerated way of looking at it and my punctuation is horrible, BUT it's a fair description. If you take everything and put it into a frail and feeble version of a person, YES that person is going to have a hard time keeping up with the persona they have always showed you. THEN add on YOUR daily thoughts, worries, concerns, and general discomfort in having to deal with the whole thing to begin with. (No matter how much we love someone or tell ourselves we want to help the person we love tremendously, if you do it long enough or you are REALLY their full-time caregiver, you WILL come resent them.) If you are a caregiver and you haven't felt this way, you will. It won't necessarily be an aggressive feeling. Sometimes it's slight and in the back of your mind showing itself only at the worst of times but some of us will have some pretty intense thoughts we thought we would NEVER HAVE. (If I could have started several paragraphs to make this easier to read I would but I can't for some reason.) Anyway, it boils down to this. If you consider how many personalities or "moods" there could be in 2 different people, that is what you are facing. You cannot control their group of personalities, you can only control your own. If you remain in the thought that no matter what that person says or does, I will love them through it and beyond it because of who they have been to me all through the past, you will start to appreciate the new and different personalities you are seeing from the person you are caring for. Even the rude and nasty side of those people will have a different look to you. Sometimes you just have to let things be WHAT they are and let people be WHO they are. You don't have to make sense of it. You don't get to make sense of life. Life makes its own sense. What you do with it is what makes it GREAT or something else entirely.

When I think it can’t get any worse it always does.
Two weeks ago I sprained my ankle, forget the fact I am not supposed to put weight on it and my husband had Mohs surgery on his nose last week, they grafted a piece of skin from behind his ear, they stitched the skin to the gauze and he was to return in a week, the second day while I was not looking he removed all of the stitches and gauge. I now spend all day watching him and even then I can go to the rest room and the bandages will be off when I return. I think he has taken them off at least 10 times today. All of a sudden while watching tv I see blood running from his ear it took me forever to stop it, then he removed the bandage from his nose and started picking at the graft. When I say anything he raises his voice at me. I just can’t see myself living like this between his prostate cancer, it metastasizing to his abdomen and pelvic, plus his fractured back and the dementia it’s almost too much for me. Anytime he raises his voice I start to shake my nerves are shot. My girlfriend has someone Parkinson’s, cancer, ra and is in a wheelchair we talk about the fact that we doubt we will outlive them? They are killing us a day at a time. We went to a daycare I left him for a couple of hours and his response was are you abandoning me? Well at this point it is me or him if I don’t get any relief I think I will have a stroke. I m going to go and get the paperwork Monday and fill it out and like it or not he will have to go. In between he is the man I married and he tells me 10 times a day he loves me of course I know that but the words don’t seem to mean the same anymore. I just said I was going to bed so he went and I came back out to the family room. Thanks for listening? I did have someone come for 3 hours as I drove off I was actually smiling and thought this is the person I no longer recognize.

@hankhelp Wow! Your words really helped me. It was such a bad bad day today that I said to him he is killing me a little every day, I am so angry that he is removing his bandages all the time and picking at his graft, see below? That I just lost it. Your words were spot on and really helped me. Thanks

@jeanadair123,
I am so glad my words helped. I know everyone says the same thing, "You're not alone.". As true as that statement is, and you are NOT alone in this, people like us who make the choice to care for our loved ones often cannot help but feel alone in their efforts. We feel this way for individual reasons that are specific to your situation and circumstances but mainly the emotions that we feel, as we go through the journey of caring for our elderly family members, are so vast and different that we feel as if anyone NOT in our specific position could ever understand. This feeling of dealing with specific personality traits both of yourself and the family member you are caring for gives you, as the caregiver, the misinterpretation that no one can understand your struggle. You are RIGHT! No one can understand your specific feelings any more than you can understand your elderly family member's feelings and actions at times. One of the key thoughts I had to make sure to maintain constantly is that "I cannot do this alone and that is OK!". I found that if I stopped looking to others to take over my position and, instead, looking to people for what they CAN DO effectively to help.
I had a bad habit of turning away help because I knew that my family member, in my case it was my grandmother more so than my grandfather, only wanted ME to be the one. No matter how mean they seemed to be at times they only wanted ME. If you can sit down and write out what your average day looks like, you may be able to delegate some responsibilities or actions possibly giving you a few more moments to keep your psyche intact. This sometimes helps if you have people around you that don't want to do it all but do want to help. Delegating also helps with family relationships in that it defines peoples' responsibilities so that you can more accurately set your expectations and have less friction between everyone that "thinks" they are helping.
When it all gets down to the point you have to remember that you are only capable of taking care of yourself. If you cannot take care of yourself, you are not helping anyone else. If you feel that you are getting to the point where you are personally suffering more than you are helping, maybe it's time to look for some outside help that is more directed to meeting your expectations. Just remember that you are DEFINATLY NOT ALONE in this community. There are millions of people out here like us, all with a slightly different story surrounding the same big picture. You never know what experience of another may be pertinent to your situation. Keep reaching out. Write your story. Doesn't have to be publicly or even on a computer. Handwrite your thoughts and learn a few breathing techniques for calming your thoughts. You will be amazed how much just taking a few moments to breathe and concentrate on your thoughts may help. I am praying for, thinking of, and will be looking out for you. Stay strong! The fact that you are even considering much less doing what you do for your loved ones makes you an AMAZING PERSON! Take care of you!

@hankhelp Your words are so comforting thank you.
Today is a new day. I woke at 6am he was still asleep so I got up and did a few minor things that only take a few minutes. I didn’t want him to pull the bandage off. I then went back to bed easier to keep n eye on him. He woke several times but I stayed and actually did not get out of bed until 8:30Am, bandages still intact.😁 I just need to try and make the next 12 hours tolerable. I write this as I am eating breakfast outside the weather is beautiful. He has already asked if he can take the bandage off so that’s a good start, he didn’t just do it. I am going to try and think of things he can do to keep his fingers busy. We will start by watering the plants I am glad it is Sunday no appointments. Thank you again and know you are also not alone also.

@jeanadair123
Sounds like you are taking the good where you can. That's what it's all about. Life is like eating an elephant. You can only do it one bite at a time. Just remember that the bad times are temporary. Maybe try adult coloring books, card games on the phone or actual cards, or puzzles. I used to make cards with the pictures of friends and family on each of the face cards. It seemed to help here and there. I put a pic of myself as the King of Hearts and my Sister as the Queen of Hearts. It somehow resonated with my grandparents that we were the ones in control but everything we did was from the heart. Good luck with everything. I will keep my eye out for your comments if you ever need to talk. Wishing you a wonderful day!

@hankhelp Thank you you are so kind. I only tell one person who is in the same situation we bounce our frustrations off each other. My best friend just thinks I need to take the next step, a home. I am far from there it wouldn’t happen unless I was in fear of my life. I have had 45 years of a perfect life it’s not a lot to ask, he would do the same for me. You write really well you should consider being a mentor. I forgot the same bandage is still on 14 hours. 😂

@hankhelp Your words are so comforting thank you.
Today is a new day. I woke at 6am he was still asleep so I got up and did a few minor things that only take a few minutes. I didn’t want him to pull the bandage off. I then went back to bed easier to keep n eye on him. He woke several times but I stayed and actually did not get out of bed until 8:30Am, bandages still intact.😁 I just need to try and make the next 12 hours tolerable. I write this as I am eating breakfast outside the weather is beautiful. He has already asked if he can take the bandage off so that’s a good start, he didn’t just do it. I am going to try and think of things he can do to keep his fingers busy. We will start by watering the plants I am glad it is Sunday no appointments. Thank you again and know you are also not alone also.

@jeanadair123 My husband has moderate to severe dementia. He can't seem to stop picking at his dry skin (which he picks until it bleeds), or any bandage that he has where he can reach it. This compulsive picking is a symptom of dementia. No amount of scolding him or reminding him that he needs to leave the bandages on will change his behavior because he is no longer rational. What irks me is that he bleeds on the sheets, and those blood stains require extra treatment when laundering them. Recently he had a basal cell carcinoma lesion removed from his left forearm. It has been a real challenge to keep that open wound covered. What I have used that helps if the bandage is on an arm or leg is a dressing called Coban. It comes on a roll and sticks to itself. It is the type of dressing that is typically used when you give blood at the lab or donate blood. It is hard to find the end to remove it. Hope this helps.