Trying to self stage DH

Kellybelle · September 29

I have gotten some wonderful words of encouragement and great information on staging from you and I so appreciate it!!! I still have a question though. I read the stages and see some things in one category but only a couple in a later category. What could that mean? My Mr. Math has gone to someone who is struggling with numbers and paying our bills. He could get us anywhere without a map and now gets "lost" on occasion when I'm driving just a couple blocks from home. He seems mostly ok to everyone else, but he struggles with word finding, short term memory, two doctors have told him no more driving at all. He takes care of himself and does household chores while I work. He is having balance issues and has had several scary falls in the house at night. He's been on sleeping pills for years but now they seem to make him more confused. I called a neurologist who specializes in memory care and they said they could see him in May 2026! Any suggestions? Ideas on staging? I'm so confused. God bless and hold you and your LO's!

blacksparky · September 29

I too was once in your situation where I wanted to see what stage my DW was in. Once I thought I pinpointed the stage, she would do something that questioned my interpretation of what stage she was in. I finally decided that it really didn’t matter what stage she was in. I have now created a new stage for her that she will be in as long as she is here with me. That stage is I am here for you my dear wife and I will do whatever I can to keep you both safe and loved even when you have no idea who I am.

Kellybelle · September 29

https://alzconnected.org/discussion/comment/254847#Comment_254847

Thank you so much!!!! I have been so caught up in all the "stuff" to learn about AD that I didn't focus on the important part. He's my best friend and I just need to focus on caring for him. God bless you for that life changing reminder!

ronda b · September 29

You might want to stop the sleeping pills after talking to your Dr.

Kellybelle · September 29

https://alzconnected.org/discussion/comment/254850#Comment_254850

Ok, I just read they can make confusion and balance worse. He's been on them so long and been fine, I didn't realize they were attributing to the falls. Thank you so so much!

howhale · October 2

I too thought understanding what "stage" my dear wife was in would be helpful. And then I learned that each person is different and fluctuates between stages often. To me the values of the stages descriptions was only to help me understand behaviors I might experience just to be aware. Knowing her "stage" did not make any difference in any treatment for her or in our life together. It was only information to know as her primary caregiver to help me understand what may be forthcoming and reduce the shock when it happened. Everything written about this condition is just the "average" of all the experiences and observations collected. Yet to see anyone say their loved one followed the stages exactly.

harshedbuzz · October 2

@Kellybelle I'm going to respectfully disagree with those who think staging is pointless.

Disease progression, as expressed as a stage, is critical to making care and safety decisions. I would remind those who think stage because their LO straddles 2 or even 3 stages, that PWD are considered to be in the latest stage for which they have a symptom not attributable to another condition. I would also point out that decisions around safety need to be matched to the PWD when they're struggling the most.

IME, many loving spouses and a good portion of adult children have trouble with this. Loving eyes sometimes don't want to see what is obvious to others. In my situation, mom's denial of dad's degree of impairment was driven not just by the pain of watching her once handsome and intelligent husband vanish, it was also about avoiding agitation from enforcing limitations of dad's driving or drinking as restricting her ability to take respite in the form of leaving him home to run errands or spend the day at the pool.

I'm not surprised there's an 8-month wait to be seen. It's almost a year in my medically well-served area since the introduction of the infusion medications. Until then, I would talk with his PCP about what you're seeing and to ask about the sleeping pills. Are they a prescribed medication or an OTC? Many of the OTC sleep aids are anticholinergic medications which have been associated with increased risk of dementia with long term use and with worsening memory, confusion and reasoning in older people as a side effect.

https://www.health.harvard.edu/blog/common-anticholinergic-drugs-like-benadryl-linked-to-increased-dementia-risk-20150128812

I find DBAT's "age equivalents" useful as a safety gut-check around things like managing money, driving or staying home alone. It can also help you anticipate steps to take around protecting your mattress, bringing in incontinence supplies, etc. so you're prepared.

DBAT (7) (1).pdf

One caveat, when you do see the neurologist, it's likely s/he will use a 3-stage model of dementia to describe where your DH is. The medical model is based more on what treatments are appropriate vs the DBAT which is intended to care needs.

HB

l7pla1w2 · October 3

I think @howhale and @harshedbuzz are saying similar things. Knowing the exact stage is less important than getting a sense of where your LO is in the disease's progression and what symptoms or behaviors may be coming. In the end, caregivers have to respond to the symptoms and behaviors we face, regardless of into what stage they might fall.

Michele P · October 3

https://alzconnected.org/discussion/74237/trying-to-self-stage-dh

We were just told by a pcp that many with balance issues fall while getting out of bed during the night. The sleeping pills would heighten that risk. Maybe look into time released melatonin that would not cause a drug state of mind.

howhale · October 3

Became concerned for my wife getting up during the night and I might not wake up to assist. Purchased a safety rail to install of one side of the bed with open access to the bedroom so she would not be able to just slide out of the bed without enough effort so as not to wake me. Because we have a king size bed with each side being an adjustable TwinXL bed, only needed the rail on the one side. As I became more exhausted and she was still somewhat mobile, I had to find a way to allow her to get up with my assistance yet keep her in bed without my help. The rail was easily removable by me to make it easier for her to get up. The rail I used used straps to attach it so not permanent installation modification needed.

jgreen · October 5

https://alzconnected.org/discussion/comment/255208#Comment_255208

I too purchased a small side rail for DH. Initially he was insulted, but after two nights he changed his mind and said he liked it! Gives him something sturdy to pull on to get in and out of bed. And as you said, the effort he uses wakes me up so I can keep an eye on him. So far he is ambulatory and balance still okay.

Chammer · October 7

@howhale which safety rail did you purchase? We have a similar situation w adjustable twin XL mattresses in a king frame we already have. Mattresses sit directly on the adjustable frame so not sure what rails would work for this situation. DH has significant physical issues that will eventually require something besides his bedside table (very stable and sturdy) to get in and out of bed. Thank you!

howhale · October 8

https://alzconnected.org/discussion/comment/255566#Comment_255566

I purchased the rail from Amazon. While it says not to us eit on the bed we both have, I did do so using the straps to go beneath the mattress and attach to the frame of the bed. It allows the top part of the bed to be adjustable and the foot section could be depending on how you align the rail. Take a look and feel free to reach out with any questions. It worked very well throughout. I also purchased one for the interior side of the bed later on to allow me to move that bed apart for easier access. The therapist and hospice nurses were all very pleased with the rail and function.

https://www.amazon.com/Able-Life-Click-N-Go-Extendable-Adjustable/dp/B0B5FRCRR8/ref=sr_1_9?dib=eyJ2IjoiMSJ9.qEIj9f7MYblymgf7IwlatY7kc4PfgRB_yfBrX2jr3sSIN7p6aEclQ9ph-zIw0SnIHLwILOjR6vE9y7H0DTQHcMo8Tbc5s0wDS9Po7yCM86NFy_GlWlprEwK44H_2vDFMx0R5ymCTvjmxfF4wTLsBauJwVMb6b2Hv0F8co3Ui1XG5UAWFodKAvEpZYqrN9ASa5zq2VAdtLofLfsQ-KfLThtxUP6Z-AQBhlSQT5eftx0c7YRTokry7JNDHDnlXP57sgj1YGIErzuIy1QgohhpKskcqKhfkzETQCX8BflSc7i8.uYu6sMuZNCwG2cGuOAMgzafW70BNN9H420H3xS6b8zY&dib_tag=se&keywords=bed+side+rails+for+adjustable+beds&qid=1759915306&sr=8-9&ufe=app_do%3Aamzn1.fos.38027135-cd42-4c7a-aab7-dededb4303ea

Trying to self stage DH

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