So many questions(2)

Daughter80

Hi all. I really appreciate this group so much. My mom was diagnosed 4 months ago with dementia/Alzheimer’s.   

As far as legal things, what do I have to get done asap? 

Are there support groups for care givers and PWD? It would be ideal for us all to have support. 

We have a neurologist appointment coming up and I plan to ask about drug trials and lifestyle changes, but are there other things I should ask about? 

Do visuals help with daily tasks like brushing teeth, bathing, changing clothes etc?  My aunt has to make mom do all of these things and mom can get offended then they end up fighting. I was thinking to post a sign in her bathroom with just the words “brush teeth, shower….etc” 
The doctor and eye doctor appointments revealed some meds we could cut back on to see if that helps and to me I learned that none of my mom’s vision issues are actually vision related. It is all Alzheimer’s. After the neurologist appointment I was going to look into homeopathic medicine, but I don’t know that this could actually be helpful. I would love to have my mom get more exercise and eat healthier, but she seems unable to do much if that makes sense. To go for a walk is a struggle because she looks like she is very visual impaired. Not the case, but how the disease is impacting her. So of course I worry about her falling.  I tried getting her on a stationary bike and even this seemed too complicated for her. I had to literally put her feet on the pedals and hands on the handles and after 2 minutes she was done. And she just doesn’t like healthier foods. I can’t force feed her obviously. Do I even push this with her?  

I just wonder if I should just accept where mom is and focus on support, therapy and quality of life? I had this emergency feeling when we first moved her out. Like if I could just get her to a doctor, they would see something about her vision or meds that would fix her or make things better. So I am coming to grips with the reality of where she is. Not easy or what I wanted, but reality none the less. Thanks so much. 

sandwichone123

ASAP, you should get DPOA for health care so someone is legally empowered to make decisions about medical care and DPOA for finances so someone can access funds to care for your loved one. These may already be in place, but check and see. They may need updating. You should also ask about qualifying for medicaid as many pwd end up needing more care than their resources can provide.

There are many support groups. In the upper right on this page is a link for Local Resources, which is where I found my support group (I think!).  It sounds like your mom may not be able to benefit from signs. One thing that often works is to play follow the leader. For instance your aunt could put toothpaste on both toothbrushes, hand your mom her toothbrush, and then model brushing teeth. Bathing is frequently an issue, and if you do a search on this board you will find a ton of posts.

Homeopathic medicine is unlikely to help. Your mom is unlikely to benefit from a placebo effect, since she won't understand what the meds are supposed to do. Unfortunately for all of us, degenerative brain diseases just keep going. My philosophy is to give my pwd the best *today* I can, rather than using today to try to buy more time in the future. If you can support her where she is and work on some strategies to support your aunt that sounds like a best bet.

Old89

I am sorry to see that you face this road.   I started where you are except with my wife 3 years ago and every day is a new learning experience.

The decision about how much to focus on yourself and on how proactive to be with your mother is intensely personal and very dependent on individual circumstances.   You will find from the neurologist whether it is actually Alzheimers or something that may be treatable so it is important to complete that step.   While there is no cure for Alzheimers there are medications often used to extend memory for a period longer than it might otherwise remain.

Everyone has a different learning style.  Support groups can be helpful.  I found that they are not all the same and some may not be a good fit and if that is the case, just sample another one.  You can start with this website.  The Alzheimers Association has local chapters which typically list resources including support groups in your area.  You can find your local chapter here:

https://podcasts.apple.com/us/podcast/dementia-care-partner-talk-show-with-teepa-snow/id1398127252 

I have leaned more heavily on books and podcasts.   There are a lot of each.  If you use the search function in this forum to find posts on books you will get a lot of suggestions.  

Spotify and Apple Podcasts have a search feature which will turn up podcasts on caregiving and on Alzheimers.   Probably the most well known and extensive set of podcasts that are practical in nature and typically organized by topic are those by Teepa Snow.  

https://podcasts.apple.com/us/podcast/dementia-care-partner-talk-show-with-teepa-snow/id1398127252 

I wanted to know everything and solve this immediately and 3 years later find that it is a very long process with new lessons to learn each and everyday.  

There is a tremendous amount of information on how to support and interact with people with dementia.  The part that has been the hardest for me is the grief of losing my wife's active companionship after 45 years of being in a happy positive marriage.   I am now more of personal assistant.  

I could not have survived this without the added ingredients of a wonderful therapist and anti depressants.  

My best wishes on your journey.   

Tfreedz

Hi Daughter,

My mom was diagnosed 4 months ago also so I definitely don’t have all of the answers you are looking for. 

I did go with her to a CELA who helped me get POA , will, also medical proxy with all of her medical providers so they can communicate with me. Took POA to her bank and had to search her home for any financial information I could find.

Good job moving mom closer to you, your aunt will definitely need your support and breaks. We moved mom in with us so I definitely get the questions about hygiene. Visual clues don’t seem to help because she doesn’t notice them even after I’ve pointed them out. What has worked is me saying, “Would you like to shower before me or after me?” Sometimes she gets offended but I just try to play it off as I just was wondering which order she wanted. I would think that might work with teeth brushing too.

We got her to a neurologist which I had very high hopes for. She was able to tell me my mom has frontotemporal dementia but not with 100% accuracy. Apparently most meds don’t work with that diagnosis and there isn’t a stage level or predicted time frame with it either according to her neurologist. She did prescribe remron to help mom stay asleep and increase her appetite. But my main questions were what type of dementia, what stage, what meds help, and what to expect and when.

As far as support groups, I found one through this website in my area for caregivers. Have yet to find one for PWD but I think that’s a great idea. The one I want to attend has been canceled in the past but has one coming up next Tuesday so I’m looking forward to that.

Like you, I wanted to fix the problem and have finally realized there is no fix. Quality of life and support is my main goal for my mom now. So sorry you are dealing with this with your mom, it sucks! Keep us posted on how it goes.

Old89

I should have added, that many support groups are now virtual so that you can attend from anywhere and it saves you from having to arrange someone to stay with your LO. 

As a result you can even attend groups out side your locale.  

For example DuetAZ.org has support groups in Phoenix but you can attend virtually. 

Similarly Banner Alzheimers Institute in Arizona has a robust calendar of support groups.

https://www.banneralz.org/classes-and-events/calendar?PageNo=1&Tnoi=31

Daughter80

Thanks so much. Mom had already gotten a formal diagnosis from a neurologist of dementia of the Alzheimer’s type. This is an appointment with a neurologist by me since we moved her. Part of me even wonders if I should keep the appointment. These can be scary and hard on her. But I guess I am just going to get refills and ask about trials. No testing. 

Can you be on POA without a lawyer?  I think I am on both medical and financial and of course will check, but I was not a part of the process. 

Reality sucks, but making her time and our time together as best as possible is and will be my priority. 

I will also share the modeling/ use of choices and questioning with my aunt to help with hygiene. 

Thanks so much for the ideas and support. 

Rescue mom

Your local Alzheimer’s Association could be a big help. Just Google “Alzheimer’s Association in…(your county or city).” for a contact number or email. 

They have support groups for caregivers; the one in my town also  has support groups for people with very early dementia, but I think those are less common. (Because such groups can’t much help aPWD in mid stages. They don’t understand or remember enough).  The groups were by zoom last year, now back to in person, although that can change.

The local AA experts can also meet with you one-on-one, and talk about what you need to have or get done in terms of legal paperwork. (Free service). They can give you a list of attorneys who specialize in elder care and dementia. Also about adult day cares and other services available. All kinds of local resources and help, they were a big help for me, for sure. They don’t recommend any one person or business, but let you know what’s available. You need that paperwork and POAs, finance and health care, yesterday.

Signs and notes may help for a while, but don’t be surprised if they don’t. Exercise and healthy eating are always good for everybody, but sometimes you have to decide if it’s worth a fight. Being realistic, the gains/goals for an older person with a terminal illness are very different from a younger healthy person. .  As someone else said, give her a good “today,” don’t worry so much about the future. 

 A bike of any kind probably is beyond her now. PWDs often develop a strong desire for sweets, which is always a concern, but also, you sometimes just have to get them to eat…anything, just eat.

As you said, you have to accept where she is, today. We cannot fix them, but we can make them comfortable, and keep them calm and safe. We are so used to having treatments, meds and other things to stop or slow a disease, it’s hard to get your head around the fact that this disease doesn’t work like that…