Not sure where to turn

popofcolor15

Hi, I am new to this board, and am hoping to get some guidance. My mom has been showing signs of dementia for awhile now, but has gone downhill fast over the last few weeks.  She is 82, still living in the house with my 89yo dad. She has been to a neurologist, who recommended neuropsych testing. We are in the process of doing that, but I'm not sure what to do in the meantime.  I dont think my dad can handle this much longer.  She is functional in terms of self care- she can eat, bathe, dress herself, etc.  She doesnt know my sister half the time, and her short terms memory is minute to minute.  I'm overwhelmed and dont know how to handle this.  Please, does anyone have any suggestions as to what the next steps should be? I dont know where to begin.  Thank you so much.

SusanB-dil

Hi popofcolor - welcome to 'here', but sorry for the reason...

Glad you have found our little corner of things. 

Do make sure mom doesn't have another underlying cause of any decline, such as vitamin deficiency and such.  But if you've noticed changes for a while, anything is possible.  But especially a major decline in just weeks... might want to make sure it isn't what they call a silent UTI.

Also make sure paperwork is in order - DPOA and HIPPA accesses.

Yes, It can be overwhelming and discouraging to see a LO in such a state.

Check the 'solutions' tab above and read in 'archives'.

This is also helpful: 7 stages: https://www.alzheimers.net/stages-of-alzheimers-disease

MN Chickadee

Welcome, but sorry you have to be here. The first thing is to see an elder law attorney. You want to make sure you have all DPOA and legal documents are air tight especially if you need to move her to a memory care facility (most PWD don't go willingly.)  And the attorney can also help with financial planning for long term care, especially important when there is a spouse. There are rules that vary by state and you want good advice up front to avoid issues down the road. I would also call your local Agency on Aging, they likely have lists of resources in your area that pertain to dementia. Most counties have this hotline. Also the Alz Assoc has a hotline and can point you to local resources. It's a free service. 1-800-272-3900. Support groups in your area can also be not only cathartic but also a good place to get reccomendations and ideas of what to do. 

I found a book called The 36 Hour Day to be very helpful when I was starting out, it gives practical advice on everything related to caregiving for a PWD. 

Are there any adult daycares in your area? That can be a great stop gap when you need to get some respite and figure things out. Most are trained in dementia care and find ways to entertain people so the family can get a break. My mother went 5 days a week in the middle to later stages of Alzheimers and it allowed us to keep her home for a couple years longer than would have been otherwise possible. Many will handle things such as help with toileting, giving medications, and more. 

If you think they are on the brink of crisis, I would tour and evaluate memory care facilities immediately and get on some wait lists. A full time caregiving spouse can go from handling it to in way over their head pretty fast. Things can change quickly with dementia so having done the leg work on finding an acceptable care facility is a wise thing to do now. Incontinence is what became a turning point for us, it was just too hard to handle at home. Given your dad's age it is possible he will need care as well, so perhaps a continuing care complex with multiple levels of care would make sense for them. If you need advice on how to find a facility don't hesitate to ask for more in depth advice. You could also look at arranging home care, but unless you are close by and able to do a lot of the work it can be a great burden to organize and keep staff. 

popofcolor15

Thank you so much for your replies and advice.  Thankfully they took care of the legal and financial apsects a few years ago, but we will try to meet with the elder care attorney next week to make sure everything is in order .

Really appreciate the resourc suggestions, I wasnt really sure where to turn

thank you again

eaglemom

Welcome to the message boards. You will find this a place of support and a place where you can vent. 

If you will look at the top of the page you will see 'solutions.'  Click on that and it will bring up multiple topics. Just look through which topics you are interested in and click on them. 

It is all very overwhelming in the beginning. Even if you've slowly seen this happening its overwhelming. As questions as we are here to help you and your parents on this journey. I'm glad they have the financial aspect already taken care of, you don't know how important that truly is.

Have you contacted your local ALZ Chapter? I would encourage you to do so. See if they are offering virtual or in person support groups. Those would be helpful for your parents.

eagle

Feeling alone51

I am so sorry and I have been there. First make sure someone has POA and or Medical POA. My mother was in NY and I was in Texas when she asked me when I was going on my honeymoon, I had been married for 15 yrs at that point. Got on a plane the next day and was flying back and forth until she got a UTI which exacerbated the symptoms. Got her into a hospital because of the UTI and at that point the social worker at the hospital stepped in to help with everything. I am now taking care of my husband with LBD and he is only 47. Neuropsych tests will only confirm at which stage her cognition is at.

Mimi..W

Hello popofcolor15.  I'm new to the chat too.  I happened to somehow find this forum about 5 months ago and was so overwhelmed that I'm just now jumping back on.  To tell the truth it just seemed like I really didn't have anything to complain about since my LO is in the ESs.  She was pretty self-sufficient until recently.  She fell and cracked her knee.  We have hired day care givers but they are a hit or miss.  We haven't found a keeper yet.  

Anyway, I'm not sure how this works but if you need to chat.  If anything, keep posting so we can learn from each other.  I don't wont to take away anything from you and what you are going through.  So take care and thank you for sharing.  If it wasn't for you I would have stayed in the shadows alone.  

Thank you and take care.