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!

Interested in more discussions like this? Go to the Caregivers Support Group.

@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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Thank you, John. The social worker was out today and we discussed the bed. I am going to call the people that brought it to us and find out what is available through medicare/medicaid. We will definitely do something other than what we are doing at the moment. Thanks so much for the link. I understand much better what you are saying now and can see how a mattress like that would be infinitely more comfortable.

I am sorry about your sister. It seems you have faced so much loss. I pray God will pour out multiple tender mercies on you and give you respite from loss. You are a blessing.

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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

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Thanks @anncgrl. Hope you find something that helps and is available through medicare/medicaid. I'm blessed to still have a younger sister, just wished I could convince her to stop smoking which is what caused both my other sister and our Dad's death. Tried for 30 years on my sister that passed away of lung cancer. The reason she fell out of the hospital bed in her home was that she woke up and wanted to go outside for a smoke. I'm not giving up hope for my youngest sister and she is in her mid 60s.

God Bless,
John

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@newgrandmom

Hi @newgrandmom. Welcome to Connect. I see that you tried to post a message to this discussion but it came up blank. Can I help?
Please contact me using this form https://connect.mayoclinic.org/contact-a-community-moderator/

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@maxiesmom

Hi anncgr. Your situation sounds similar to mine. My husband is 87, has recently gone completely blind and is somewhat incontinent. I make sure he takes immodium if he eats somthing that leads to loose bowels. I also have convinced him to let me know if an accident happens, because he has tried to clean it up himself with disastrous results! So far we're managing without help, but I can feel myself needing some time away from the house by myself. We plan to move closer to our daughter but I'm partially disabled which makes it hard to go through years of accumulation in a large house. As they say, old age isn't for sissies! I'll keep you in my thoughts. Francine

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Thanks for your sweet words and your understanding. Nobody understands unless they've walked in your shoes! I wish our sons were closer...we're in Florida and they're in Michigan. I could use their strong backs to help with our move. Our daughter and two granddaughters are here but busy with jobs and kids, and also two hours away. It could always be worse...my next-door neighbor's husband is dying of cancer and not expected to make it to morning. I'll miss him, when you get older it happens with too much regularity. Hugs

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@maxiesmom

Hi anncgr. Your situation sounds similar to mine. My husband is 87, has recently gone completely blind and is somewhat incontinent. I make sure he takes immodium if he eats somthing that leads to loose bowels. I also have convinced him to let me know if an accident happens, because he has tried to clean it up himself with disastrous results! So far we're managing without help, but I can feel myself needing some time away from the house by myself. We plan to move closer to our daughter but I'm partially disabled which makes it hard to go through years of accumulation in a large house. As they say, old age isn't for sissies! I'll keep you in my thoughts. Francine

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Hi! You are obviously an intelligent woman who is accustomed to being independent and taking care of your own business. I so relate to that as I have been that way all of my life. It took this situation with my husband to break down some of those barriers because I could not maintain successfully. I don't know how serious you are about moving to Michigan. It may be an idea that sounds great but is not something that gives you much joy. I lived in Clearwater in the early 70's and I have been to Michigan in the winter. I will take Florida hands down. My head is full of suggestions for possible ways to get help with moving. I will reserve those thoughts. If you are serious about moving or get serious about moving just let me know. Not saying I have the magic answer but I am great at resourcing...lousy at math...great at other things.
16 years ago my parents moved to be near to me. My father had started having frequent bouts with his heart...little things at first but enough that they called me and I went when they called. I lived about 120 miles from them and missed work, etc. Fortunately I worked for the government so I had the leave but not endless leave. My father decided that they would move near me so that I could help them out without driving so far, etc. They moved around the corner and for a time were completely self-sufficient. They were much nearer doctors than they had been where they lived and all the stores, etc. were nearby. Time passed and my father died and then I looked after my mother. She is now 88 years old and, as I said, we have moved her to be near my sister. She is in a retirement community in independent living at the moment and loving it. God is good. All of these decisions were difficult. I understand your situation and I am going to be praying that God will open doors that you have no idea exist.
You will understand and laugh at this...I went to see the psychologist this morning and decided to go to the senior center to begin a daily 30 minute routine on an exercise machine. I need it for the exercise and for my mental health. When I got to the car my husband had called. Oh my, he could not get the t.v. to work (he forgets how to use the remotes) and did I give him his medications for the day. I said I will be right home. Honey, he was like a child jealous of my time. He needed lunch, he needed something to drink,he needed his medications, he needed a blanket so he could take a nap AND he has a knee that is hurting him so the doctor told me to use a machine I have from when I had knee surgery. It pumps cold water through a wrap that goes over the knee. My husband's doctor said I should use it on his knee 3 times a day. Oh my goodness! This is my husband.."It's too cold!" "Do I have to use it?" "How long does it have to stay on?" I had to put a thin towel over his knee so the cold would not "hurt" him. If I was Jewish that would have been an "Oy vey! moment. So I asked him if everything was fine and could I please do some other business now and he grinned and said, "Yes"! There are days and then there are DAYS! Much love! If you want to we can talk. Let me know and I will give you my phone number.

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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

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!

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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!

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@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!

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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.

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