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Posts (28)

Jun 29, 2017 · Obsessive Thinking and Caregiving in Caregivers

I apologize for taking so long to reply to your comment. I like your comment that you believe the things they get stuck on are a way to express fear. Thinking about it now I can see how there is an element of fear in the constant requests for validation of what has been said time and again. Thank you for that insight. I am participating in a chat group at caregiving.com It is an amazing site and has a variety of chats plus tons of information and opportunities to share about yourself.

Apr 22, 2017 · Obsessive Thinking and Caregiving in Caregivers

My husband has FTD and is 70 years old. I am a full-time caretaker for him. Today and yesterday he became completely focused on the fact that the ROKU was not working on our t.v. I am not technologically savvy but I have installed several ROKU devices without a problem. This time I could not get the thing to connect to our wireless internet. I worked for a long time. I read advice on the internet. Unplugged, plugged back in, gave the thing hateful looks and finally decided that I would use the t.v. I bought recently that has HDMI. I lugged it out into the living room. It is big and, while not new, much newer than the huge t.v. we have been using. I plugged in the hdmi cables, hooked up the ROKU and VOILA, the ROKU works. Did he say thank you or great job? No! He found a show, said he hoped it was in English and when it wasn’t wanted to know if I could make the subtitles larger. I was an inch away from reaching for the cast iron frying pan and introducing him to the “other” caregiver. LOL Once he gets a thing or idea on his mind he cannot let it go until he is satisfied. At times it is funny and at other times it is infuriating. He does not notice nor care how I am impacted by it. He just wants his need met. I have, a few times, stood my ground and refused to continue trying to put a square peg into a round hole, but much like whack-a-mole,. what is suppressed today pops up tomorrow. If I did not have a sense of humor you would be reading about me in the paper.

Mar 26, 2017 · Frontotemporal Dementia in Brain & Nervous System

I have not heard about Aracept. My husband has seen some benefit from Seroquel but that has been a peripheral event as he uses it to help him sleep. His tremor in his right had has improved 95% and his walking has improved enough that I notice it. I am not sure that he is aware of either change nor would tie it back to the Seroquel. Do you recommend I discuss the Aracept with his doctor? Thanks!

Mar 26, 2017 · Frontotemporal Dementia in Brain & Nervous System

My husband has FTD and had chronic, debilitating depression for years. He has been, as you well know, on many different medications over the years. As relates to FTD, and this is anecdotal and was unexpected benefit, my husband asked for something new to help him sleep. They weaned him off zyprexa and another medication and started him on Seroquel. I had to lower the dose because it made him too out of it at night but he had fairly strong tremors in his right hand and they have stopped. Also, his walking improved. Still not great but a noticeable improvement. I am volunteering with a AFTD to start a support group in our area because education about AFTD is so important. It is a journey. I applaud your choosing to go to the conference. I would love to go but not going to happen this time. I see a psychiatrist to help me stay real and to be effective. I find that an amazing resource also.

Mar 26, 2017 · Caregiving and Reality in Caregivers

Scott, thank you. I have been gone from this chat for awhile and have no idea why! I think I am losing it. LOL
Your words are so deeply felt and I appreciate your courage in the raw honesty. My thoughts and prayers are with you. I am sad for the loss in your life.

Feb 21, 2017 · I wrote this last night and want to share it. in Caregivers

How may I help you?

I hear this question often these days. Well meaning people with good hearts and willing hands ask me this question. I don’t know what to say in response. We are loners in our home. The idea of anyone coming in and helping creates a discontent in me. Not that our place is clean and ordered. It is our place. With rare exception we have always chosen to go out rather than have anyone in and the dementia has not changed that about us.

How may I help you?

This question requires me to think. I shrug it off and run as fast as I can peeping over my shoulder to see if I am being followed by the “how can I help you” people.

A lovely group of men came and installed an awesome ramp for us. No cost. A friend of mine saw the need, organized the people and they arrived and proceeded to build the ramp and built it professionally as well. We peeked out the blinds and followed their progress. Conversations of our gratitude inevitably led back to their gratitude for being able to help . So I stood and Robert stood a little and we watched and felt cared for and loved and cherished. With the minimum of fanfare they left one day. On to their next project is what I am thinking.
How did they help me? Obviously the ramp and paying the cost of it was a huge help but how did they help me individually.

They helped me accept help. They brought everything including the plan, the wood, nails, schedule, water, food and their own conversation. They helped me by beautifying the front of our home and by fixing the steps at the back of our place. They helped me to understand that someone saw us and got it. They got it and they knew where our journey is headed and they understood the road ahead. They helped me to feel less lonely, less alarmed at all the things that need doing. They bore our burden.

How may I help you?

Share my burden. Know me. Know my need.
Understand the journey or ask me to talk about it. Then love me and suggest a frivolous snack.

Did I mention that yummy snacks play a huge role in helping? They do. I don’t know why. They are comforting and child-like and help me experience a child-like pleasure.

How may you help me?

Let me help you. Ask me to do something that will help you. It sounds odd but helping someone else is the greatest way to get outside of suffering and into relieving suffering. Keep it simple but not condescendingly so.

How may you help me?

Pray. Pray. Pray.

How may you help me?

Love your life. Live your life. Remind me that this too shall pass. Bear my burden and I will bear yours. Inside of that is a truth I do not understand. It is true. It works. But I do not understand it.

Feb 17, 2017 · Alzheimer's and Incontinence in Caregivers

Man! I had typed a long piece thanking you for your information. Scott, and I hit something and it went away. Probably circling Denver or Anchorage this very minute! LOL

I appreciate the options you offered for coping with incontinence. Certainly I have developed a way that works for us at this moment. Change is the one constant. I had no idea how much my husband would change, how quickly or how often. I don’t know if this is true with other types of dementia. There are no professionals in my area who provide a general understanding of FTD. Most of what I have done, with incontinence in mind, developed on a long learning curve. I also had to be patient and let my husband come to his own understanding and acceptance of the absurdity of pretending he could get it done on his own.

I plan to caulk along the bottom of the walls of my husband’s bathroom (mobile home) to prevent seepage when mopping up and then painting his bathroom floor with a couple of coats of an industrial paint and cover all with a urethane coating. I need to make that floor as non-absorbent as possible.

The home health care nurse frightened the bejesus out of me discussing the importance of cleaning up an area and my hands, etc. after handling human waste. It extends now to clothing, sheets, etc. I am fortunate that my husband is somewhat ambulatory and, as you know, any part of what I say is subject to change for better or worse.

I am glad we are highlighting incontinence. It is a topic most folks do not care to discuss and it needs discussing. We are at a point now that my husband believes I want to be caring for him and that I don’t love the clean-ups I do love him and I am not ashamed of nor disgusted by him or our daily challenges. I do, however, have less patience than I would like and do get tired and less tolerant.

Each of the shares on the this topic provided me with a sense of commonality and I need commonality.

Thank you!

Feb 17, 2017 · Alzheimer's and Incontinence in Caregivers

Hi, Whitney! My husband has a different type of dementia but he also has incontinence. He wears something like depends and adds an extra pad to help absorb urine. The bed, sofas, etc. all have waterproof padding on them. Because my husband’s dementia is different from Alzheimer’s he does not act in the way you describe. He does, however, refuse to admit that he needs to change his depends on a regular schedule rather than waiting until his shorts are wet and, usually, the sheet where he was sitting. He will often use a urinal we brought home from the hospital. It is in the bathroom but he prefers it to the toilet. I am grateful because he was peeing around the toilet as much as he was peeing in it. I am confident that when his brain sends the signal to urinate it gets garbled in transit to the front of the brain where those type messages are interpreted and issued by the thousands every day. So I believe him when he says he does not think he needs to change but I know that he usually does need to change. It is completely different with bowel movements. He does not go very often and, somehow, he misses the toilet for at least part of each event. He often has diarrhea rather than solid and that often is a challenging mess. Today was not a good time in the bathroom aspect so I jumped on to this chat. Today he had two movements. One was not too bad in terms of clean up and all that stuff but I did take the opportunity to lure him into taking a shower. He never fully cleans himself. The second time was loose and I am not ashamed to tell you that I had to get up my inner wonder woman mood before going in and cleaning up that mess. It later proved to be near his bed rails on the floor beside of his bed also. So, today I have helped him clean himself, changed depends three times, three sets of shorts, three sets of sheets, on my fourth set of laundry. My body feels like I have been in the gym. He can walk a bit but getting up and down is usually beyond his grasp.We have a hospital bed. I have lifted him to a sit-up position and then to his feet and then helped him to wherever he was going about 30 times today. Much of it had to do with bathroom stuff.
Having said all of that…A friend of mine promised her mother that she would never put her in a nursing home. Her mother got Alzheimers and my friend told me after a few weeks that she was going to need to get new carpet, repair walls and replace wooden floors. Her mother would stand up in the bed, squat and pee /or poop. and then go off on a rant.She banged her walker into everything. Claimed she had not eaten when she had just finished and called my friends name over and over in a loud voice.I have not seen my friend in awhile. She never did figure out how to manage her mom’s bathroom behaviors.
My choice has been to go with the flow. Literally. I protect against it rather than to try to fight it. Waterproof bedding and waterproof padding on sofas, etc.It is exhausting keeping up with the laundry, remaking the bed, etc. I don’t have anyone helping me.If my husband becomes constantly belligerent and mean I will have to let him go to a home. If he were to be violent towards me or completely unable to walk I would place him in a home and visit every day. I have boundaries and I have determination. The key for me is acceptance. Big doses of acceptance.
I keep things simple. My house is in total disarray. I let a lot of stuff slide and caretake my husband. I use the chat rooms for support.
Why am I telling you all of this rather than telling you how to make your person change their behavior? Because I have very little control over my husband. He is slowly going away. Things are heartbreakingly different and they are difficult. My success with my husband comes from my success in accepting that what is….is.
Were I experiencing what you are experiencing I would need some home health people in or other family members helping. The decisions I would need to make would be heart wrenching. I would seek professional help and trust them and their experience. And, I would stick with us in the chat! You are not alone. God bless you!