Confused

LN48

Husband was diagnosed in 2010 with moderate stage AD. The neurologist later said frontotemporal dementia. Thru 2017 there were no major problems. He drove, walked daily, handled money. In 2018 after being hospitalized twice with pneumonia things went down hill. He started getting lost driving &/or walking. He turned left in front of an oncoming car & was hit. Thankfully no one was hurt. He decided to quit driving. He started reacting to tv shows. We made necessary changes. Now in 2023 I bathe, feed & dress him. He's had urinary incontinence for over a year but no fecal incon yet. He walks only if someone is holding his hands. He rarely stands up on his own. He has fallen so many times & I call 911. He's never been seriously hurt. He fell twice today. I'm 75 & am usually alone with him. There have been a few times I have hooked my arm under his & used my body weight to force him up. I now have a lift char in the dining room. He has sat on the toilet for hours I have forced him up there too but I know that it's dangerous for both of us. My question is "How do I know when it's time to leave him in the bed?" I try to keep him on his feet for a 2 hrs a day but today was 1 hr. It's usually 1.5 hrs now. He rarely speaks. When he's in a chair he leans to one side-does that mean he's losing his ability to sit up? I've not been able to get him in a car for a couple of years. We've had video dr appts & home health a couple of times. Husbands physical health is good. The home health nurse said husbands vitals are better than his. I will appreciate any insight. Thank you

towhee

Hello LN48. I am sorry you are seeing this progression, but glad you reached out. You are right, this is becoming unsafe for you. May I suggest you reach out to your doctor, tell them of all the falls and that your LO is having trouble getting up from the toilet, and ask for a Physical Therapist or Occupational Therapist to come and evaluate your husband. They can recommend equipment or at least teach you to use a gait belt. Also see if you have palliative care in your area that will come to your home. That could get you a nurse visit once a month. You could also see if he would qualify for hospice, from what you say it is unlikely but there is no harm trying, they could provide you with equipment you need if you continue to keep your LO at home. Alternatively, you might consider placement.

As to keeping him in bed, as long as he can stand up and stand on his feet for a minute, there is usually a middle stage where you use a wheelchair instead of him walking. Talk to the PT about a sit to stand lift, it might be expensive, but it is better than killing your back.

Kibbee

Medicare will provide a Hoyer Lift and a hospital bed as long as the equipment has been ordered by his doctor. I recently acquired both of these items for my DH. He has a progressing neuro-cognitive disorder and in the past two years his mobility has declined significantly. He can no longer walk but because of his cognitive condition he will attempt to stand from his bed or chair, and then ends up on the floor. Using the Hoyer Lift I can get him safely off the floor by myself, and then back into his wheelchair/ recliner or bed.

LN48

towhee & Kibbee, thanks for your replies. Our pcp is very understanding & ordered hospice for DH He was on it for awhile but they did not cover all his meds so I took him off. PT & OT came & both said he was not responsive enough for them to be able to work with him. I have a hospital bed & a hoyer lift. The bed is a great help - the lift not so much. My neighbors daughter who is a nurse had me lift her but it was too heavy for me to push. I think I saw a video for a sit to stand lift that does not require the patient to hold onto any bars. I'm going to look for it but don't know if it will lift from the floor & I don't want to get a bunch of stuff I can't use. I am going to research palliative care. I've been reading the forum for awhile & found good ideas & comfort. Thought I had a good handle on things but comparing him to the FAST scale ???? Thank you again