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Caregiving and Reality

Caregivers | Last Active: Aug 5, 2023 | Replies (60)

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@anncgrl

Thank you, Scott and Debbie! I believe I am blessed to have learned in 33 years of AA that sharing has an immediate positive impact on my perspective. Your responses have proven me true one more time.

Scott, we do have a hospital bed. I am going to ask about the mattress you mentioned. They brought a "thing" for lack of a better word that I thought would be much like a memory foam mattress but it is hard, sinks in under weight and does not allow for movement. I talked with the case worker about changing beds. Another company had provided the bed right after one of my husband's stays in a rehab/nursing home. She said I needed to talk with them. The mattress you describe sounds comfortable. I took the "thing" off of his bed and put his twin mattress on the hospital bed and he is sleeping much better. He resists the bars being up also but I told him last night that I am responsible for taking care of him as his wife and as his assigned primary caregiver so he could live with the rails being up or he would need to move into a place nearby. With frontal temporal dementia some people wander. I am fortunate that he does not have the leg strength to go too far but he does get up and down during the night and he is pretty much a zombie due to medication. I told him this morning he was like having a baby again last night. These things come and go and are worse one day than the other.

He is wearing depends with an extra pad in them and I bought him soft, cotton shorts with an elastic waist that are actually for night or probably underwear for some men. They do not have a fly but are easy to pull down or to the side. Part of the challenge is that his mind talks to him and his body does not respond appropriately. Simple movements become time consuming when his legs are rubbery and he is feeling as if he is going to fall.

We live in a mobile home and the floors are particle board. I pulled up the carpet int he bathroom he uses and did put down covering near the toilet but he decided at some point that the urinal works better for him. The challenge is bowel movements that are often too loose for him to hold them once he figures out that is what is happening. As you might well imagine the particle board is not user friendly with wet of any kind. I am scrubbing the life out of it to clean it and using bleach and will probably come over it one more time. After it is fully dry I am going to paint it and after that dries I am going to put something down that is akin to the sealant used on decks. The word has left my mind. I am going to spread it to cover all the floor and the seams where the floor and wall meet. Polyurethane...that is the word. This will keep anything from soaking into the flooring and will make clean-up much easier.

These are my challenges.

1. Unless he is going to the doctor's office he is not interested in going out. I believe he needs to get out in the fresh air. I would push him in his wheelchair but so far he has not agreed to go.Literature I read suggested that the caregiver offer and suggest in gentle ways that the FTD patient make efforts to go out but not to push them too much. Tomorrow I am going to ask again.

2. He hates showers or baths. It is a fight to get him to get soap and water on him.

3. Well, I cannot think of a third thing. I believe we are at the point that most of my "thinking" needs to be simple.

I have come to believe that he was symptomatic long before we knew something was wrong. He is a loner, avid fisherman, curmudgeon and ;short on words. He has had deep depression with many treatments and hospitalizations. Apathy in human relationships was already present. I am offering to volunteer through the AFTD site to help to educate families about FTD.

Oh yeah, I have adult ADHD in spades. Can you imagine? Organization and a set schedule are so important to people like my husband. They are nearly impossible for me to provide. Mostly it makes for some very humorous situations at this point.

Debbie, I have found that educating myself has been and continues to be invaluable. I do not have a love for neurologists and ours were very inadequate at explaining anything to us. It has been through chat groups, listening on you tube to talks about FTD and reading sites like the Mayo Clinic to help me have some level of comfort.

In Christ,

Lark

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Replies to "Thank you, Scott and Debbie! I believe I am blessed to have learned in 33 years..."

Hi again @anncgrl I will look up and see if I have the name in the records. It was a standard hospital bed, but the mattress was filled with air on a continual basis. This had multiple benefits of comfort, fewer bedsores, and with the moving of the air, keeping the patient cooler/warmer depending on the season. You can also alter the firmness. It is now the only mattress our local DME supply house stocks.

I wish you well with your struggle between your ADHD and the demands of your husband. In the case of my wife and MIL, keeping them on a very regular routine was incredibly important to my being able to keep their anxiety at anything close to a manageable level.

Peace,