Losing Patience

Robroygal

Hello,

Just joined this forum today and feel like I need to write something.  Like so many others, I kind of need to gripe.  I don't think I have one specific question.  My mother turned 80 in May 2022.  In March of 2020, her long-time partner passed away and she has never been the same.  Prior to him dying, my younger sister and I had noticed "stuff" with mom.  Nothing seemed super serious - repeating stories, asking a question just minutes after asking the same question and never being able to find her keys, cell phone, credit card, etc....  We knew she was stressed, being the main caretaker for her partner, and she was also getting older herself.  But now, it is much worse.  So much worse, that during the probate process for her partner, I was able to convince her to have the attorney write a Trust for her and also create a POA.  So, at least I have that.  For the past two years, my sister and I have called her every day.  Often times, she was crying, or just very down.  She would say how much she disliked living alone and she was much more anxious and scared than she had ever been.  We finally convinced her to move closer to me just 2 months ago.  

So, here is the good stuff.  We found an apartment 2 blocks away and we can walk there in about 4 minutes, and she seems to like it.  Her home is now in escrow and will hopefully close in 2 weeks.  

However, I now see her every day and I'm having trouble with my patience.  In January 2021, we told her PCP about the issues we had noticed and she did some cognitive testing.  Mom scored "21" and was told she had mild/moderate cognitive impairment.  She keeps saying that it is just grief, but it's not.  She refuses to have any other type of medical appointment to dig deeper for an actual diagnosis.  She does NOT want to know what this is, which is very typical of her.  She has always avoided anything troubling.  She would rather not know.  

She walks to her our house every morning and we go to her place every evening.  She asks us the same questions over and over and over.  We have noticed that she is having more trouble finding words and remembering the names of things.  The other day someone asked her where she moved from and she did not know.  She had lived there for 80 years, but could not remember the name of the city.  She struggles with finances, something she was always very good at, but now gets very confused about paying bills or balancing her checkbook.  Frequently, when she stands up, she says that she is dizzy and we have noticed some issues with balance.  Based on everything my husband and I have read, she appears to have dementia of some kind and possibly Alzheimers.  Her older brother had Lewy Body Dementia and passed away several years ago.  

We have a magnetic notepad on her refrigerator where we write her schedule for each day, and she has allowed me to help pay her bills, but I find myself snapping at her.  I feel terrible because I know it's not her fault but constantly repeating myself is tiresome.  

The other things I have noticed is that she is terrified of being in a restaurant.  She cannot seem to understand a menu and can never remember what she wants to order when the waiter arrives.  She also struggles with phone conversations and social interactions.  I think that her hearing is diminished but can't get her to see a doctor.

I'm going to look into a local support group.  I just feel like I need to talk to other people who are experiencing the same frustrations.  I'm sure I will have more and possibly specific questions moving forward.  Thanks in advance for any tips.

Babilv

Robroygal, so sorry you are experiencing this with your loved one.

The frustration and anger you are experiencing is all to common and I too felt the same, still do sometimes but, I’ve learned to look at the bright side of focusing on what my LO can do and how blessed I am to still have her here. I’ve also learned to laugh and smile with her, it not only helps me, it helps her too as she is much more happy and relaxed.

Do find an outlet, support group and/or other way to express yourself, maybe just a friend to listen as it sounds like you really are doing a great job.

Hang in there and remember no one is to blame, she’s not doing things to upset you and she is doing the best she can.

Be blessed!

I wrote a poem that I think may help to calm your heart, here is the link:

https://www.alzconnected.org/discussion.aspx?g=posts&t=2147560672&boardid=77

Ed1937

Robroygal, welcome to the forum. Sorry you are dealing with this. I have attended in person  group sessions. They are good if you need specific local information. But this forum will give you more answers than you will get locally, unless it's a local thing you need. People here understand where you are coming from, and they offer suggestions and hand holding. Our group is like family, and we genuinely care for one another, even though we will likely never meet each other in person. Bring your specific questions here.

If you were to tell your mother that there are many conditions that can cause her symptoms, and when treated, could make some or all of the symptoms disappear, would she agree to see a doctor? You would not be lying when you tell her that. There are more than fifty conditions that can mimic dementia symptoms. But truthfully, it sounds like middle stage dementia.

I think it is high time you took over all financial matters. She is vulnerable to all the bad eggs who want to get her money. You will also have to keep a close eye on credit cards, etc.

I'm glad she is within walking distance of you. But you just have to remind yourself that her brain is not working properly, and she can't help it if she repeats herself over and over. She can't change.

One last thing. Do you or anyone else have a durable power of attorney? If not, you really need to see a CELA (certified elder law attorney) ASAP.

Quilting brings calm

I’m glad you’ve done the trust, the POA, and have sold her house. I’m glad you’ve moved her close to you.   However I suggest your next move is to research assisted living facilities close to you.  So that you can be ready.  She isn’t going to be able to live alone much longer. An AL provides her a ready made group of peers,  meals, housekeeping, laundry, medication management. Transportation to the stores, etc.  it will relieve the pressure on you, 

Since you have POA, take over her  bills.  Have the mail come  to your address 

jmlarue

It will save some sanity if you convince her to let you take over the finances. A fiblet about how all the businesses now insist on electronic payment. Since you know how to do it, you'd be happy to take on that chore. Takes far less time and patience than trying to straighten out a mess all the time.

If you want to seek further diagnosis of her dementia, you need another fiblet. Never tell her it has to do with her cognitive decline. Say the appointment is a regular checkup required by Medicare. Or, tell her you're concerned about her dizziness and worried she might fall. Always be with her during the appointments. She'll never remember doctor's orders. Write out any dementia concerns you want the doctor to know. Ask the nurse to give him the paper before you're called into the exam room. Hopefully, your attorney set up a durable power of attorney for both healthcare and finances. You will need both many times during this journey.

Your mom has lost her executive function in order to make decisions - like what to order in a restaurant. It's so much better to tell her, "I'm having (blank), Mom. It's really good. Let's both have that, OK?" If she insists on perusing the menu, you could print up some small cards to give to the wait staff that say, "Mom has dementia. Thank you for your patience." Be forewarned. Dining out will become very hard as the disease progresses and neither of you will enjoy the experience. You can transition to going out for ice cream or dessert and coffee, for example. Keep it casual and simple.

Some of us here thought our LO's hearing was failing, but they tested fine. The problem was not with their hearing, but with their comprehension. It's like they're missing every 3rd word so everything is garbled and insensible to them. One way to combat that is to change how you speak. Speak slowly in abbreviated sentences as you might do with a very young child. Phone conversations are always hard since neither of you can get clues from body language. When the phone calls become excessive, it's probably time to consider not allowing her to live alone.

It's not easy coping with dementia. Nothing ever stays the same. It progresses and changes can happen suddenly. I catches us caregivers off-guard in mystifying and frustrating ways. You'll find a lot of support here on this forum, but do look for in-person support groups, too. Both will have value.

zauberflote

Welcome! You sound like my sister did when she finally snapped and said Mom must go to AL, that sis could not run two households any more. For her it was housecleaning and laundry too. Since you have POA, you have the power to move your mom to AL or even MC. I'm not trying to be callous or harsh here-- but knowing that she would trust you with her life if she were of complete mind can give you courage. 

Has she fallen yet? If she is dizzy, or has balance problems, I'm concerned that that little walk to your house may not always be easy for her. I know my mom walked/fell off a few curbs in her time, before we knew what was going on. And I would plan to keep a close eye on her in colder weather-- if she suddenly becomes disoriented while walking, she could end up anywhere. 

mommyandme (m&m)

I think it’s probably time you do her finances alone, without her involvement. That will alleviate the impatience you have with her never ending confusion and questions during the payment process.  If it all just disappears, she’ll eventually let it go.  Although the accusations of you stealing her money may show up (many of us have been just where you are and will be) but should subside too.  You can reassure her everything is paid, she has enough money and she can relax now.  It’s her time to be pampered. 

On her walking alone to your house, if she becomes disoriented or dizzy she could get lost or have a catastrophic fall that might change things quite quickly. 

All the changes are difficult to navigate at first but then there’s finally acceptance, hopefully.   And I’m just referring to us caregivers.  I’m trying to grasp a few changes myself right now.  UGH! 

Thanks for sharing and please keep in touch. 

KJUN

I've just joined this site today and found this particular message board.  I read Robroygal's post and wanted to cry.  I feel so much of the same things.  My dad passed away a little over a year ago.  Before he died he was my mom's primary support.  Now it is all on my shoulders.  

I realize that the forgetfulness is not my mom's fault but it is exhausting answering the same questions over and over.  I think some of her issue, in addition to dementia, is that she is extremely anxious.  She refuses to accept this and won't even talk to the doctor about it.  

I'm also trying to help her with finances.  She has always been very responsible but now is often late on her bills.  I've secretly converted most of her bills to online pay.  She lives in an independent living facility and refuses to let me switch her rent over.  She ends up being late every month.  When I try to talk to her about it she insists that it has only happened this one time.  Of course she doesn't remember all of the previous months and there is no point in reminding her. 

I am still mourning the loss of my dad and am having to mourn the loss of my mom as well.  We no longer have a mother daughter relationship.  Other than losing my dad, this is the hardest thing I've ever done. 

May flowers

KJUN, I was where you are 5 years ago, except it was my MIL who died (cancer) and FIL who has dementia. We moved them near us to help her care for him but she was dx with cancer within a month and died 5 months later. Talk about a whirlwind, his care went from our assisting to our doing it all. It is hard to even have time to mourn one parent when the care of the other becomes a priority so fast. So sorry you are going through this.

quartlow2

I believe you are completely normal...just my uneducated opinion

That said, her hearing trouble may be more about the dementia and associated aphasia (google it) than something an ENT or hearing aid or yelling can compensate for or fix. Mom didn't want a diagnosis either. We didn't know what aphasia was until late in the game. Mom knew what was going on around her but couldn't communicate. Her dementia symptoms came after her aphasia.

From your description, I am concerned about your Mom losing her way on her walk to your house. After we talked Mom and Dad into moving closer to my brother, I talked to several of my friends with parents with dementia. They all said not to be surprised if you need to move them again in 6-12mos. They were right. Care just needs to be adjusted according to the progression that you are noticing. Fulltime care of a LO with dementia wears on anyone. You're in my heart in your journey. If you have faith in God, pray for wisdom. He'll give it to you in the care of your mom.

JJAz

Robroygal, you've received a lot of good advice here.  I just wanted to add that orthostatic hypotension (dizziness) and balance issues in addition to the memory issues are all signs of Lewy Body Dementia.  Since her brother had LBD, this should be on your radar since there are particular concerns to note. 

https://www.merckmanuals.com/professional/neurologic-disorders/delirium-and-dementia/dementia-with-lewy-bodies-and-parkinson-disease-dementia?autoredirectid=12759

sophirolr

My friend has a mother who was diagnosed with early onset Alzheimer's. She found an apartment next to hers and now her mother lives there. So she has more time and opportunity to visit her and spend time with her. I also decided to help them and when I found https://ceva-logistics.pissedconsumer.com/review.html , I recommended them to transport things. Now they are doing great and I also often visit her mother with a friend, as she is a wonderful woman

Ci2Ci

KJUN wrote:

She lives in an independent living facility and refuses to let me switch her rent over.  She ends up being late every month.  When I try to talk to her about it she insists that it has only happened this one time.  Of course she doesn't remember all of the previous months and there is no point in reminding her. 

If you are able (either on your own or through her), making an advance payment on the rent might help there. That way, if she is "late", it won't matter since there will be a credit on the account.  

FloydSnax

RobRoyGal

Its normal to go crazy after answering the exact same question a million times but it will get easier. This whole thing takes our patience to another level. I used to snap back, and I rarely do anymore. Because like you stated, it's not their fault. Keep repeating that inside and it should come easier. 

Now, unfortunately, her illness will get worse. I hate to say that but it's better to be prepared. I can't even remember when my mom had the facilities for a walk alone... She calls me by my name, but doesn't know who I am. This disease is so irrational. Makes no sense. 

Everyone thinks it's like caring for a kid but it's not. It's a thousand times worse because kids will finally figure it out and dementia wont. Good luck and if you ever need to ask anything.... I've been where you are. Don't hesitate to ask. This site has saved me so many times and I would never turn my back on it or its members. 

Jason 30032

I understand your anger and frustration.

My mother goes from kind and calm, to hostile and belligerent within minutes, and it's often seemingly impossible to have patience.

I live 30mins away from her house, which she has made very clear that she's NEVER going to leave, and gets confused very often, thinking that I had planned to drive out to do some specific tasks that we never discussed, and I've been traveling back and forth, sometimes two or three days a week.

I'm concerned for her, but it's frustrating, and making my life unmanageable because her requests are so random.