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Conflicted in TX
MomsAdvocate
Posted: Tuesday, September 10, 2019 11:34 AM
Joined: 9/9/2019
Posts: 1


My mom was diagnosed with vascular dementia and Alzheimers yesterday. This was the first time I had heard the two of them together in any diagnosis.  My husband and I have two kids and have had my mom living with us for over 13 years. Once my father died, my mom was a mess and we knew she couldn't be alone.  Slowly she started isolating herself into her room and seemed to get little things confused, but who doesn't sometimes so I just kind of didn't think twice about it. About four years ago she asked me to take over her finances, which was surprising as she has always wanted to manage them on her own. Then about 2 years ago, she asked for me to start managing her pills. Again, surprised as I know she felt this was something she could manage on her own, but was glad she asked because I was starting to see her confusion more and more. 
Last September, while in the kitchen talking to my 10 year old daughter she "passed out" and hit her back really hard on the cabinet.  I grabbed her head and shoulders and started saying "mom, its okay, I'm right here, you are going to be okay."  While my daughter is in the background crying and screaming thinking she did something to make her "fall" I am yelling for my husband to call 911. After what felt like, 5 minutes, she finally gasped and started breathing again. It was like God had said no, not yet. She woke up and seemed okay and just said, "my back hurts" and I want to get up. I told her she could not get up and we had an ambulance on its way. She didn't think that was necessary, but I told her she couldn't move until they arrived. So no sign of heart attack, stroke etc. She just had fractured one of her vertebrae and was sent home with home health care with PT. We get home and things are going well. Then about a month later she falls again and this time she broke her arm/humerus, which sent her to rehab for two weeks. She did not like it at all, but they were wonderful and did a great job of getting her prepared for home. While home she started acting a little strange, now I know it was the signs of a UTI.  One day she starting walking without her walker into the kitchen and getting herself a drink, I stopped her and said, "Mom, where is your walker?" She said, "I don't need it, I just want to get a drink of water." It was obvious when she was walking that she needed her walker, to keep the long story short, we were taking her back to the ER due to her belligerent behavior.  It is during that hospital stay we got the diagnosis of dementia and how UTI's are common for dementia patients and make behavior much worse. So we began home health care again. Since then she has probably had 2 or 3 UTI's, now that I was aware of the symptoms I could catch them early and get her antibiotics quickly. In the last two months she has fallen 5 times and it was almost like she couldn't remember how to walk.  Doctors put her on anti biotics to deal with any infection she maybe fighting. So this last bout of falls left her lying on the floor in the bathroom one morning and she said she had hit her head on the bathtub, but she was coherent and was making sense of everything. None the less, the doctor wanted her to get a CT scan and all was fine, but they said in that CT scan that she had Alzheimers and vascular dementia. What does all of this mean? Emotionally I am in knots and struggling, physically, I am finding my blood pressure to be rising and not able to exercise like I need to. I provide her with all meals in her room, she does not leave her room at all, unless the PT comes to make her walk. I try to get her to walk, but she says she is too tired. She sleeps A LOT! I'm starting to think she needs to go to an assisted living facility, for her safety and my sanity. But my guilt of even thinking about it is really bothering me. I am not sure what to do. I have so much more to write, but feel I have written too much already. Would love some advice and understanding. 

TessC
Posted: Tuesday, September 10, 2019 2:15 PM
Joined: 4/1/2014
Posts: 4849


What a sweet picture of you and your mom! It's easy to be conflicted and struggling when you first get the dx of Alz and VD but with education you will learn what you are capable of doing. So don't worry about the future at the moment and concentrate on what you can do to make your life and your mother's life easier today. You have come to a good place for such information but I think there are some great books on caregiving and dementia that will help even more.

 You have a big learning curve ahead but once you learn more-you may find there is a lot you can do to keep your mother home longer. My mother has been with my husband and I for almost 15 years and I would not trade it-it has made me a more patient, resilient and stronger person. I feel like a warrior now, lol. Here is a good link made by one of our members. Good luck

https://www.alzconnected.org/discussion.aspx?g=posts&t=2147523850


MacyRose
Posted: Wednesday, September 11, 2019 2:45 PM
Joined: 12/15/2011
Posts: 3915


Has your mother had bloodwork done recently?  The reason I ask is that my dad's girlfriend kept falling without any real reason and it turned out that she had acute leukemia which was causing her to feel weak and then she would fall.  The incident you described in your kitchen sounds a lot like what happened with her.  She passed on in July.  

As to your mom, it seems things are going pretty well at home except for the falls.  I don't think that it would be any different in a care facility.  What will be different is for you and your family.  I gotta tell you that your daughter and husband should come before your mother and if it is stressing you out having your mom at home, then you cannot be your best for your daughter and husband and your mom would tell you that she should not be your priority and to put her in a nice memory care facility.  Assisted living is not going to cut it for your mom.  Assisted living is for normal seniors who are just frail and it means she would have to go down to the dining room for meals and she would have to decide to go to activities.  AL has about 2 caregivers per 30 residents.  MC has 3 caregivers per 10 residents and they think everything out for the residents since the residents usually cannot initiate.  I would suggest you see if there is a Sunrise Senior Living near you and go look at that facility and talk with them about your mom's condition and what they would do for her.  They have something called AL for Memory Care where they divide residents up into small groups and the each group has a caregiver who takes care of them.  That might be a good situation for your mom.  Then later, they have full-moon locked memory care - and yes, eventually your mom is going to need that, probably in the last few years of her life. 

My mom had vascular dementia.  Basically microscopic blood vessels in the brain go dry and the brain dies little by little.  There is no effective treatment or cure.  For my mom, the areas of the brain affected caused her to become angry and violent.  Toward the end of her life it was like hand to hand combat to deal with her.  Fortunately she was little and easy to overpower, but she still managed to bite her caregiver, hit, kick and punch others and put my hand in a vice-like grip that was hard to extract myself from.  She couldn't help it.  But I worry about the effect seeing your mom go through this stuff will have on your daughter.  Your daughter is the main reason I think your mom is going to have to be placed sooner or later, for her dignity, to protect your daughter from seeing and experiencing this horrible disease at a vulnerable age when she should be focused on friends and school.  It will drastically affect your household and you and your husband.  It's a terrible tragedy that this can happen, and about all you can do is protect your daughter and husband and give yourself a safe place to be away from it.  

Find a nice facility that is within 15 minutes of your home.  The closer the better because the drive time from your house to the facility needs to be added into your visit time.  So if you place her 30 minutes away, and go for a 30 minute visit, the total would be 90 minutes per visit.  If the place is only 5 minutes away, the total would be 40 minutes. And eventually there will be times that you are called up there in the middle of the night, so you want this to be as convenient for you as possible.  For your mom, it's really not going to matter so much.  Set her new room up like the one at home, bring her stuff.  She might not even realize she is in a different room.  

This document pretty much describes exactly what to expect with this disease: https://www.alzinfo.org/pym/feature/clinical-stages-alzheimers-disease/

BTW, I'm in Texas, too in the Dallas area.


 
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