Caregiving and Reality

Posted by anncgrl @anncgrl, Jan 23, 2017

It is 3 a.m. I am the primary caregiver of my husband. He is diagnosed with frontal temporal dementia. He lives at home and I am assisted by a program called CAPS which I qualified for thru DSS here in N.C. This program pays me for a certain number of hours a week to be my husbands caregiver. They provide a home health nurse, etc. But that is not why I am posting.
Today has been one of the days when caretaking has been real. By this I mean I have a big mess I am cleaning up in the bathroom. My husband is incontinent but often makes it to use an urinal which I empty into the toilet. He tries to make it to the toilet for bowel movements but his walking is not good and getting his shorts and depends down AND hitting the target usually ends up in a mess which is made worse by loose bowels. Forgive graphic detail please. I think being real helps me and others. So I am in the midst of that job when I hear my husband calling my name faintly. He had rolled off his bed and was on the floor in an awkward position and out of it because of his night medication and generally disoriented mind. I could not get him up because he could not help me so I put a pillow down, covered him with a blanket, remade his bed and waited until he had more strength. He is now sound asleep in bed with the rails up on both sides. He does not like those side rails but I told him it was that or he couldn’t stay home. Not being mean just safe for him and for me. We can both get hurt in lifting situations.
When he needs to get up from sitting I use a gait belt and I often help him get to his bed. At night I often feel as if I have been lifting at the gym.
So, headed back to the bathroom to finish that job. The home health nurse said it is important for me to wash my hands thoroughly after anything to do with bathroom stuff. Those type germs are very dangerous. She scared me into doing what she suggested. lol
Keeping it real here at our home means patience, grace, acceptance, prayer, taking time for me and sharing with others. Caregiving is not for sissies and I learn something new all the time. In case you think I have it together…both myself and my husband see a psychologist, we are both on antidepressants and we butt heads quite often. I have cabin fever and he often doesn’t know if it is day or night. YIKES!

@johnbishop

Hello @anncgrl, I’m wondering if this alternating air mattress pad for hospital beds may be a less expensive way to go if it works at $70. It also has good reviews but I really don’t know anyone who has used something like this. https://www.amazon.com/dp/B00TZ73MUY?psc=1. Praying for strength and comfort for you as I know you have a difficult situation. I was with my sister just for a few days when she was in hospice care in her home before passing away. I can remember not getting much sleep on the couch next to her hospice provided hospital bed. She fell out of the bed a couple of times the first night and the next day we were able to get the rails on the bed which she also hated.

God Bless,
John

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I gotta tell you, that smoking thing is a tough one. The gal friday at my psychologist’s office quit smoking about two weeks ago. Her husband had a heartache, barely survived the surgery, and had 90% blockage. The doctor told my friend on no uncertain terms that the heart attack was directly related to her husband’s cigarette smoking. It scared my friend into quitting on the spot. She said her children had asked him to stop smoking for years.
I have not smoked in a long time. I also gave up drinking, drugging and general scalawag behavior. 🙂 I had to do it when I hit bottom and it has not been easy. Certainly I did not do it for anyone else. Sad but true!
Well, the visit from the social worker worked wonders. We had a huge bunch of pull-overs delivered yesterday and the guy with the unit for emergency situations is coming out in an hour or so. He had been dragging his feet and we did not even know we could get the pull-overs for free. YAY! Now I am going to call the company that brought out the bed and se what we can get rolling in that direction. It truly is the small victories that count!
I went to the senior center today to do thirty minutes on a machine that incorporates legs and arms. I need the exercise and I need the interaction with other people. We are fortunate to have a great center with many options for things to do.
I hope you are having a terrific day!

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Wow! I am glad to find you guys again. I am in another chat at another site and I got confused on how to find my way back here. I am going to put the link for that site in a post later today.
Things are going fairly well here. My husband is sleeping almost 18 hours a day and seems content. There are subtle changes in him. Our daily schedule changes on a dime. I may have mentioned that we HAD to eat around 5 p.m. Now we eat as late as 8 p.m. He has shifted in the foods he wants to eat, AGAIN. Other than that we are definitely in a low part of the FTD ups and downs. FTD symptoms are strange and varied.
I am kinda going with the flow. I am home a great deal but don’t get much done. Logically, my house should be spotless and I should be reading books and watching television. I can go out and do errands, shop etc. I don’t go any further than 15 minutes from our house. In an effort to take better care of myself I have joined Weight Watchers. YIKES! I plan to begin a simple walking program today. Just little areas of my life that need adjustment and will help me to feel better in general.
Gosh, I am so sleepy this morning. I am going to sign off now and go make my hubby breakfast.

Yay! I found my way back to this site!

Liked by ladycat

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@anncgrl

Wow! I am glad to find you guys again. I am in another chat at another site and I got confused on how to find my way back here. I am going to put the link for that site in a post later today.
Things are going fairly well here. My husband is sleeping almost 18 hours a day and seems content. There are subtle changes in him. Our daily schedule changes on a dime. I may have mentioned that we HAD to eat around 5 p.m. Now we eat as late as 8 p.m. He has shifted in the foods he wants to eat, AGAIN. Other than that we are definitely in a low part of the FTD ups and downs. FTD symptoms are strange and varied.
I am kinda going with the flow. I am home a great deal but don’t get much done. Logically, my house should be spotless and I should be reading books and watching television. I can go out and do errands, shop etc. I don’t go any further than 15 minutes from our house. In an effort to take better care of myself I have joined Weight Watchers. YIKES! I plan to begin a simple walking program today. Just little areas of my life that need adjustment and will help me to feel better in general.
Gosh, I am so sleepy this morning. I am going to sign off now and go make my hubby breakfast.

Yay! I found my way back to this site!

Jump to this post

@anncgrl It sounds like you are adapting to a new normal in your life which changes on a regular basis. It is good to hear that you are taking good care of yourself. Glad to hear that you found your way back to Mayo Connect. Best wishes. Teresa

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@anncgrl

Wow! I am glad to find you guys again. I am in another chat at another site and I got confused on how to find my way back here. I am going to put the link for that site in a post later today.
Things are going fairly well here. My husband is sleeping almost 18 hours a day and seems content. There are subtle changes in him. Our daily schedule changes on a dime. I may have mentioned that we HAD to eat around 5 p.m. Now we eat as late as 8 p.m. He has shifted in the foods he wants to eat, AGAIN. Other than that we are definitely in a low part of the FTD ups and downs. FTD symptoms are strange and varied.
I am kinda going with the flow. I am home a great deal but don’t get much done. Logically, my house should be spotless and I should be reading books and watching television. I can go out and do errands, shop etc. I don’t go any further than 15 minutes from our house. In an effort to take better care of myself I have joined Weight Watchers. YIKES! I plan to begin a simple walking program today. Just little areas of my life that need adjustment and will help me to feel better in general.
Gosh, I am so sleepy this morning. I am going to sign off now and go make my hubby breakfast.

Yay! I found my way back to this site!

Jump to this post

Glad you found your way back to Connect, Ann.
Congrats on joining Weight Watchers and putting a simple walking program in place. Good for you. For me a quick walk in the early morning light sets me up best. I find it hard to squeeze in later in the day.

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@anncgrl

Wow! I am glad to find you guys again. I am in another chat at another site and I got confused on how to find my way back here. I am going to put the link for that site in a post later today.
Things are going fairly well here. My husband is sleeping almost 18 hours a day and seems content. There are subtle changes in him. Our daily schedule changes on a dime. I may have mentioned that we HAD to eat around 5 p.m. Now we eat as late as 8 p.m. He has shifted in the foods he wants to eat, AGAIN. Other than that we are definitely in a low part of the FTD ups and downs. FTD symptoms are strange and varied.
I am kinda going with the flow. I am home a great deal but don’t get much done. Logically, my house should be spotless and I should be reading books and watching television. I can go out and do errands, shop etc. I don’t go any further than 15 minutes from our house. In an effort to take better care of myself I have joined Weight Watchers. YIKES! I plan to begin a simple walking program today. Just little areas of my life that need adjustment and will help me to feel better in general.
Gosh, I am so sleepy this morning. I am going to sign off now and go make my hubby breakfast.

Yay! I found my way back to this site!

Jump to this post

I suspect morning is going to be the time for me to exercise also. If I wait too long I end up making excuses until it is too late in the evening to exercise. Thank you for your support.

REPLY
@anncgrl

Wow! I am glad to find you guys again. I am in another chat at another site and I got confused on how to find my way back here. I am going to put the link for that site in a post later today.
Things are going fairly well here. My husband is sleeping almost 18 hours a day and seems content. There are subtle changes in him. Our daily schedule changes on a dime. I may have mentioned that we HAD to eat around 5 p.m. Now we eat as late as 8 p.m. He has shifted in the foods he wants to eat, AGAIN. Other than that we are definitely in a low part of the FTD ups and downs. FTD symptoms are strange and varied.
I am kinda going with the flow. I am home a great deal but don’t get much done. Logically, my house should be spotless and I should be reading books and watching television. I can go out and do errands, shop etc. I don’t go any further than 15 minutes from our house. In an effort to take better care of myself I have joined Weight Watchers. YIKES! I plan to begin a simple walking program today. Just little areas of my life that need adjustment and will help me to feel better in general.
Gosh, I am so sleepy this morning. I am going to sign off now and go make my hubby breakfast.

Yay! I found my way back to this site!

Jump to this post

Ditto. Sometimes the day gets so busy, I say “Shucks, I didn’t even get a walk done.” Then I remember I did go for a walk early in the morning and it makes me smile. The morning seems like it was eons ago.
Today is a lucky day. I’m going to go for a second walk right now in the falling snow.

Liked by sallysue

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My husband has FTD which is a type of dementia affecting the frontal lobe of the brain. As such the symptoms come and go and to a greater or lesser degree. We are told the lesser part will be longer and the greater part shorter as time goes on. That is probably already true but my nose is pressed up against the situation 24/7 so my ability to discern is cloudy at best. This is a quick rant cause I do need to try to clean that *^%%^ kitchen.

My darling husband is sleeping about 17 hours a day at this time. Sounds good in some ways but he begins to prowl around about 2:30 in the a.m. His medication makes him extremely out of it at that time of night. He gets up and then back to bed, then up and then sleeps on the sofa, up and then back to bed. Which would be great except he needs me in order to get around without breaking his neck. I have insomnia in a big way. This does come in handy for the night stuff but I end up not sleeping at all or only a few hours and nothing else gets done around this place because we are both kinda like zombies only I can walk and think and he can stumble and kinda think. O.K. forget the rant…this is beginning to sound hilarious to me rather than angry or sad or anything other than freaking hilarious. I know it isn’t funny but humor helps so much and the picture of us up all hours of the night in our two states of mind trying to make some sense of things is pretty darn funny so no problem. I’m good Just needed to share.

And, by the way, trying to eat different is freaking difficult.

God bless each of you!

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@johnbishop

Hello @anncgrl, I’m wondering if this alternating air mattress pad for hospital beds may be a less expensive way to go if it works at $70. It also has good reviews but I really don’t know anyone who has used something like this. https://www.amazon.com/dp/B00TZ73MUY?psc=1. Praying for strength and comfort for you as I know you have a difficult situation. I was with my sister just for a few days when she was in hospice care in her home before passing away. I can remember not getting much sleep on the couch next to her hospice provided hospital bed. She fell out of the bed a couple of times the first night and the next day we were able to get the rails on the bed which she also hated.

God Bless,
John

Jump to this post

@anncgrl, my mom has been bedridden for about 13 months now and we use one of the air mattresses on her hospital bed. It does make it difficult to tuck in sheets (which she likes to play with), but she hasn’t had one bed sore because the air is constantly moving in the air mattress. We were able to get the bed and mattress “free” when she was on hospice. When she went off, we purchased both pieces at a good discounted price. I highly recommend an air mattress!

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Hi @anncgrl,

You’ll see that I moved your message to this discussion group, as I noticed there was a bit of confusion with multiple messages; but all is good now!

I think it’s a saving grace, when we can find humor in our everyday struggles.
With Frontotemporal Dementia (FTD) it is important for caregivers and families to think about long-term management issues, especially with difficult medical, financial and emotional challenges. I wonder if @ilene1, @donnajane, @lindabf, @mftucker, @sallysue, @pearlandpeacock, @kmkm, @macbeth, @tsoy, @annie33, would also join in here with some insight?

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@anncgrl

My husband has FTD which is a type of dementia affecting the frontal lobe of the brain. As such the symptoms come and go and to a greater or lesser degree. We are told the lesser part will be longer and the greater part shorter as time goes on. That is probably already true but my nose is pressed up against the situation 24/7 so my ability to discern is cloudy at best. This is a quick rant cause I do need to try to clean that *^%%^ kitchen.

My darling husband is sleeping about 17 hours a day at this time. Sounds good in some ways but he begins to prowl around about 2:30 in the a.m. His medication makes him extremely out of it at that time of night. He gets up and then back to bed, then up and then sleeps on the sofa, up and then back to bed. Which would be great except he needs me in order to get around without breaking his neck. I have insomnia in a big way. This does come in handy for the night stuff but I end up not sleeping at all or only a few hours and nothing else gets done around this place because we are both kinda like zombies only I can walk and think and he can stumble and kinda think. O.K. forget the rant…this is beginning to sound hilarious to me rather than angry or sad or anything other than freaking hilarious. I know it isn’t funny but humor helps so much and the picture of us up all hours of the night in our two states of mind trying to make some sense of things is pretty darn funny so no problem. I’m good Just needed to share.

And, by the way, trying to eat different is freaking difficult.

God bless each of you!

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You are a brave and good spirited soul going through this !! I have one who is 3.5 yrs into frontal lobe damage. After his carotid stroke 3 parts of his right frontal lobe were affected. He was so nasty that a psychiatrist was sent to evaluate him. No cooperation. I try to realize that these are still the good days. I see his anxiety and unease in new or different situations. A noisy, crowded restaurant for example. I give thanks I can be at his side to calm, reassure and just plain love him. We had 20 good years. I am grateful and pray for strength and peace for all of us, we truly are in this together! I applaud your bravery and humor!! Take care, you are his caregiver and the wind beneath his wings.

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I can’t tell where you moved me although I assume it is the FTD discussion group. Please move me or let me know if I need to make any changes that will work better.
I think I have adjusted to a long stretch of ups and downs. I know the future will bring increasingly difficult challenges. Every professional we have met who understands FTD is clear on that point. A couple of doctors have been tender towards me. Their empathy told me more than words about the future with FTD. I suspect my life is being impacted deeply at this point but it all feels normal I have listened to talks on YouTube, read medical reports online and been told by our doctors that the progression is awful for both of us. I find the most difficult part, by far, is the slow loss of my husband mentally and emotionally. He tried his best to seem his old self last week when we went to see one of his doctors. I thought I would burst into tears. Being powerless to stop this progression takes my breath away. I choose not to stare at that part and to focus on this moment and then the next moment. Anyway, that is enough for this post.

Much love to each of you.

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I admire and applaud your brave and upbeat approach, choosing to make lemonade from lemons. I too have a frontal lobe injured spouse but choose to be grateful for those good moments and memories. Presently I am searching in Sarasota, Fl for a Neuro specialist in this particular form of dementia. Wish me luck. We have some brilliant physicians here, but I need the right brilliant one!

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I’m here for you but don’t have a lot of insight. I am at a plateau right now with my sister . Plus she sleeps like a rock at night. We need to count our blessing for the things that go well and accept the struggle trying new things to solve our problems. People are very helpful on this site that’s for sure.

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@ladycat

I admire and applaud your brave and upbeat approach, choosing to make lemonade from lemons. I too have a frontal lobe injured spouse but choose to be grateful for those good moments and memories. Presently I am searching in Sarasota, Fl for a Neuro specialist in this particular form of dementia. Wish me luck. We have some brilliant physicians here, but I need the right brilliant one!

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I was in a chat last night that was only with people who are caregivers for people with FTD. It was an interesting time, to say the least, and I came away from it realizing that most of us struggle to find any medical help that includes a clear understanding of what we are encountering on a daily basis. I applaud your search for a brilliant neurologist. I have not met such a one yet. We are fortunate that my husband’s primary care doctor seems to have a full understanding as does my primary care doctor. The neurologists basically told us, after the diagnosis (another story by itself) that there is nothing further they can do to help us. They meant in terms of a cure or facilitating a regression or even a stalemate. There are, of course, many recommendations for exercise, organization, socialization, etc. My husband is not interested in any of those things. He is not mad about it either, thank goodness. I find the AFTD website to have much information, resources, etc.
My husband sleeps about 17 hours a day and is also at a plateau right now. I agree with sallysue when she says acceptance is the key.
God bless you in your search and please stay close to us.

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@ladycat

I admire and applaud your brave and upbeat approach, choosing to make lemonade from lemons. I too have a frontal lobe injured spouse but choose to be grateful for those good moments and memories. Presently I am searching in Sarasota, Fl for a Neuro specialist in this particular form of dementia. Wish me luck. We have some brilliant physicians here, but I need the right brilliant one!

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Thank you so much. It’s so good to communicate with others rowing the same boat. Will let you and everyone know when I locate a Neuro specialist who can relate to this “new normal” world we are living in.

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