What do you wish you had done in preparation for the severe stage?

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BassetHoundAnn

We're not caring for my mom at home, but one of the reasons is that we don't have a bathroom that we could wheel a wheelchair into, or one large enough to maneuver her and the chair around. Our house also lacks entrances that would be wheelchair-friendly. 

When my mom was in the middle stages and her steps were growing tottery, a friend suggested we buy a small transport wheelchair. One that could be easily folded up and put in the trunk of the car.  They were about $120 on Amazon at the time. We didn't do that. I wish we had. It would have made taking her to the doctor, dentist, hairdresser, etc. so much easier. 

When I started caring for her there were a slew of doctor and dentist appointments. She refused to use a walker or cane, so I would have to help her, hold her as she very slowly tottered from the car toward doctor's office. This grew more problematic as time went on. I couldn't leave her at the door of the office and go park the car in the faraway parking garage or lot because she would wander off. And dang all the handicapped spots would be filled. So I would have to take DH along to the appointments so I could leave them at the door while I parked the car. Then fetch a wheelchair from the doctor's office. 

So definitely a small transport wheelchair is a good tool to have. 

At one point I did buy a wheelchair from someone in the neighborhood (not realizing that Medicare would pay for one--duh) but it was too large to easily maneuver in and out of the trunk of my car. 

harshedbuzz

H4E-

A first floor bathroom with a hand-held shower is very useful. Ideally it should be large enough for MIL and 1 or 2 helpers as she will be needing hands on assistance with toileting and hygiene in the later stages. 

I would protect her mattress now with a 6-sided waterproof cover before she starts having accidents overnight. 

HB

Phoenix1966

It’s a depressing thought and one hopes it never happens, but what if something happens to one or both of you where you would be incapacitated for a length of time? Who would care for her then?

I would suggest having a Plan B in place for her care if that extreme situation were to occur. 

I would also suggest having respite plans in place for when you and/or your spouse needs a break, because you will from time to time. 

dhyink

My husband is functionally in late stage 6/early stage 7.  My biggest challenge so far is dealing with incontinence and UTIs.  If your LO has a sudden decline/starts acting out, get them checked for UTIs.  DH has a foley catheter to improve bladder emptying and it has been a godsend for me.

My other advice is to buy several bed/chair incontinence pads.  I use these in addition to disposable pads to prevent damage to the furniture.  DH is in a hospital bed, so I use a layering technique of fitted sheets and incontinence pads so that I can do quick changes if he has an accident.  

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SShort

We are still mid stage as well.  The wellchair has been huge since mom broke her hip.  The UTI challenge is VERY real.  Made her memory go on a tilt o whirl that we are still trying to get back from 2 months later.  

My suggestion is get a routine where you see what meds are being taken.  If they take the wrong ones or do not take them - you will have a mess on your hands.  There will be arguing until the process becomes routine, but it will keep things steadier long term. 

MN Chickadee

Handicap accessible bathroom and entrance to the home, door alarm or other alarm to know if she is up at night, complex door locks or one up high to avoid wandering, be prepared to lock up the kitchen and other areas with baby locks (medicine cabinet, cleaning supplies etc.) And most importantly have a back up plan. Many caregivers intend to have their LO home until the end and that works until it doesn't. It doesn't take much to get in over your head, or a change in the PWD or Caregiver's health can cause sudden challenges. I would have family members ready to step in and also be on wait lists at a couple local memory care facilities just in case. A plan B and a plan C are very wise. Also consider a plan for respite. Just like a high stress job, this one will really take its toll. It's 24/7. People find their health, their friendships and their marriage often affected by the unrelenting care needs. You will need breaks, both for an afternoon  and even longer. You would be well served to have a plan for how you will do that. Either schedule some breaks and have family or staff ready to cover it, or look into respite at a facility. Some facilities offer respite care, like 10-14 days. We found adult daycare to be a great solution. Daily respite for us, socialization for my mother. 

Butterfly02

Hello all,

My husband and I had to place my MIL who has VD into a MC facility. I was her primary care provider. It started to become too much for me and I have had multiple health issues and need not to be stressed. She lived with us over a year and in the same community for about 6 months. She hid the fact that she was not remembering things because she knew my DH would take action. With all that said, now she is in a MC facility and need help getting out of bed and all of the ADL help. She was choking on food and is now on a soft diet. She is starting to hold her saliva in her mouth. Has anyone ever experienced this with their LO? What did you do? Why is she doing this?

Grammy6

Hi, I am sorry for what you are going through. My mom has Alzheimer's early 7th stage. I have recently been brought out of the dark about mom's illness. I am on her team now though. I would make sure to have all legal matters in place. We are now left to decide, with my dad, what we think she would have wanted. It's a difficult position.

CanyonGal

 I have read much about the last stages and can see those residents in memory care that exhibit some of the behaviors, but when my mom began to show them, it was heartbreaking. I am in year 4 of being the DPOA and health surrogate and it is wearing on me emotionally and physically to deal with what’s coming up. I  wish my caregiving team was bigger than myself and my husband.

Vascular dementia just makes dealing with the other health issues so difficult because the dementia patient doesn’t understand what or why something is occurring. We are in stage 6, entering the last stage 7. Mom is in a memory care facility. I could not deal with this stage at home.