A Different Perspective

mommafour

DH and I met up with my daughter last night for dinner. She had not seen her step-father for a few weeks and was shocked and saddened by the apparent steep decline. I’ve mentioned in prior posts that she is the director of a memory care facility. I knew DH’s decline has been quicker during the past several months but she is trained to see more significant changes than I would. She walked behind him in the restaurant and nudged me to watch him walk. He’s leaning forward and shuffling his feet, which is common in later stages.  He had a little difficulty getting the food into his mouth. He ate his entire large meal and I bragged that he’s been eating more food lately when we go out. In the past couple of years, he typically would eat about 1/3 and bring the rest home (then never eat the leftovers). I thought eating larger amounts was a good thing, but she explained that Alzheimer’s patients can lose the ability to recognize when they are full and just keep eating.  DH has recently become at risk of falls. He tripped and fell at our neighbor’s home walking through their front door last week but wasn’t injured. At 5:30 a.m. last Sunday, he fell out of bed and hit his head on a bedside table, resulting in a large cut on his head and a very sore neck. I took him to the ER for head and neck CT scans, which were fortunately clear. He’s almost rolled off the bed a couple of times since then but I grabbed him. I’m looking into solutions (bedside table moved, getting a lower bed, etc.). My daughter told me that DH is worse than many of her residents in memory care and that I shouldn’t leave him at home alone. She’s coming over this weekend to help me “DH Proof” our house from fall hazards. It was good to have someone else’s perspective and advice, even though she did tell me I’m in denial of his true status .  So here I am, on the hunt for home health aides to cover while I’m at work, figuring out how to get him to accept the assistance. My adult day care drop-out isn’t going to be happy about this and will fiercely resist.  

Ed1937

The first thing is that nobody is coming to stay with him. Somebody is coming because you need them to help you with the house, and maybe some light cooking. Take the focus off of him, and put the focus on your needs. You will need to convey this plan with whoever comes to stay with him. Hopefully you can get someone who is easy to get to know, and he likes her/him.

SDianeL

I have a caregiver coming one afternoon a week for respite care for me. He was against it but I told him I needed to go to my doctor appointments so he reluctantly agreed. I said you can't stay by yourself because you can't use a phone and call for help if anything happened. I also told him the doctor said that, which she did. They sent a calm person who just listens to him talks. He talks for 4 hours about his past. She said she likes listening to him. Get a bed bumper or a bed rail. Put a night light so he can see. here's a bed bumper. Not sure it it's high enough. Look for a bed rail that slips under the mattress. https://www.amazon.com/Milliard-Non-Slip-Hypoallergenic-Resistant-Washable/dp/B0748XPZHR/ref=sr_1_1?keywords=Bed+Rail&qid=1690417492&sr=8-1

ButterflyWings

What a blessing that your DD is a professional resource to you! It sure helps alleviate the guesswork, and hopefully the unfortunate guilt that many of us feel when taking steps to protect our LOs as we must when dementia comes to town.

We have been fortunate that home hospice came on board when DH began falling as he also had some other things going on that helped him qualify. They brought in a couple of thick mats (almost like a long narrow gymnastics mat) -- for the floor on his side of the bed and my side in case he rolls over there. It made a big difference. Now that he is in the hospital bed, the rails help too.

But the main thing is he is literally never more than an arm's length away from me or our aide. Fall risk means he has a shadow that can grab him and stabilize him quickly before he hits the ground again. For 15 or so hours a week, I have a helper who is there for all required supervision and companionship, and also for him to not eat something he shouldn't (he has the leptin resistance thing your DD mentioned -- no idea when he is full and will eat himself sick if allowed. Also will eat non-food if given the opportunity. Yikes!).

We are past the challenge of how to get him to accept a caregiver other than me -- he is no longer oriented to place, time, and people, so I don't have to negotiate that. And having the hospice team in and out for nearly 2 years has helped. He still does not want physical care from anyone else (sometimes not even me), but the aide does help him toilet and get cleaned up if needed. I am the one who still needs to adjust to having someone else in our home for hours when I am not -- but it took so long to find someone reliable, I am just grateful they are dementia-experienced, kind to him, and show up when they say they will.

White Crane

I have had a caregiver coming in two days a week for a couple of hours for over a year. It took a while to find the right fit but once we did it got easier. Like you, I didn't think my DH would accept anyone staying with him. He said he didn't need a babysitter! "That's right!, you don't need a babysitter but it's nice to have a friend come over to visit." She comes over twice a week and plays rummy with him...he loves to play rummy. They have a good time and he doesn't even notice when I leave most of the time.

To find a caregiver, I called the Area Agency on Aging to see if we qualified for any help. It turned out that I qualified for 16 hours a month of respite care. For your own sake, please give a caregiver a try. It could be a real help to you.

Brenda

Ed1937

"Fall risk means he has a shadow that can grab him and stabilize him quickly before he hits the ground". Hopefully it works that way, but I think there are times that even though you are helping, you just can't prevent a fall. I always got up with my wife if she got up during the night. One night I was holding onto her arm when she fell so quickly I had no chance to stop it. And when she fell, it caught me off balance, and I fell on top of her, hitting my head on the night stand. Luckily it just left a lump on my head. But I did save her several other times.

toolbeltexpert

Momma as a caregiver being there 24 7 we tend to miss those things. My dw is in a mcf ,the being bent over and different gait are 2 things that have both happened, I did notice them but didn't think about what stage. Every now and then I do a stage assessment for my self to see the progression. Dw has had 3 very minor falls this yr so far. I belive she may a uti or kidney reaction to meds? Doctor to check today. It's so hard to dx pain when they can't clearly tell you. Being the advocate having more than one set of trained eyes. I am so glad you have that type of help and being family is so much better.

Thanks for your post you are a set of eyes for us as well when you posted.

mommafour

Thanks to all of you for your input and suggestions - all are very appreciated. The ER dr. suggested a mat for the floor next to his side of the bed, but I'm worried he could trip over it. I will give that a try, though. Luckily, we have very thick carpeting w/ padding for bedroom flooring. I read on another website a suggestion to put a pool noodle under the sheets on his edge of the bed but that may not be enough. The ER dr. ordered him to start using a walker, but that was met with an eye roll and sarcastic laughter. My mother is currently in a long-term care facility due to falls resulting from her refusal to use a walker. If I point out her status, that may help to convince him.

As far as the Home Health Aide - you all have good solutions to get him to accept. Earlier this year, the VA approved him for 9 hours/wk. of home health care but I wanted to try Adult Day Care first (unsuccessful). Since he has further declined and now starting to fall, I may be able to get the approved hours expanded. I work full time (I'm 16 years younger than DH and not ready to retire), but I am able to work from home 2 days per week so he only needs the aide on 3 days. I do think he will end up going through several until we find the right fit (or as he scares them away). DH is a kind and compassionate person but he's also very vain, independent, and extremely stubborn. He doesn't want to be perceived as needing any help and doesn't realize the extent of his Alzheimer's status.

Ed - your experience of falling along with your DW's fall is one of my biggest worries for myself. Glad you weren't injured. I'm having a very slow recovery from a fractured/displaced distal femur and I'm still a little off-balance. I'm not much help to him.

Quilting brings calm

I had to firmly tell my mom that she had to bring and use her walker in order for me to take her anywhere. I cannot support her when she uses a cane because I won’t be able to break her fall without injuring myself. I’ve already had two compressed fractures of my vertabrae, subsequently being diagnosed with osteoporosis. I had to send her back into the AL more than once to get her walker to get the point across.

As for my step-dad, he walks like your spouse. He blames it on the fact that ‘he’s just walking slow to stay next to mom’… even though he walks that way without her. He is not as far advanced as your DH otherwise though. He’s just recently started bringing his cane when I take him somewhere. He won’t consent to bringing his walker ( he uses it around the AL sometimes). I stay a few feet away from him because I cannot risk being injured by trying to break his fall. If I get injured, there’s no one available to continue helping them except the AL while I recover.

I only take them out of the AL for doctor visits. I don’t take them into stores or restaurants. Any shopping I do for them is done without them. On his recent doctor visit, the clinic’s front desk put him in a wheelchair while I parked the car. He seemed fine with that since he just sat and I slowly pushed him.

mommafour

Quilting brings calm - good points. I had a serious injury to my leg a couple years ago and don't want to go through that horrible experience again. It sounds harsh, but I would need to jump out of his way if he falls again. I can keep him from falling out of bed but not falls while walking.

jfkoc

Lots of good info given. I would only like to emphasize that it is almost always a failure to tell the PWD that someone is coming to baby sit/ take care of them. My husband was happy to provide temporary work for someone who had been laid off. That person became full time and was by his side with me when he died.

Ed1937

"Ed - your experience of falling along with your DW's fall is one of my biggest worries for myself. " I'm not the only one. Another member, McCott, was helping her husband when he fell, pulling her down too. He landed on top of her, breaking her back. She has had at least 3 surgeries, maybe 4 from that. You can't be too careful.