New here and seeking support

Hyespirit

Hello all

My name is Charlotte and I am new to this board... I am hoping to make some connections with others out there who are caring for a parent or loved one with Alzheimer's.  In my case it is for my mom.  She  will be 87 in February and was diagnosed with Alzheimer's in 2019.  Prior to her diagnosis mom lived with me for 14 years.  Aside from Alzheimer's she has a few other medical issues,   In latter 2020 and into 2021 mom began to progress with her symptoms which included memory loss, falling asleep while things were on the stove and wandering... needless to say I became a very light sleeper during all this.  She was being monitored by a neurologist who had put her on meds but they did not seem to be helping.  In early 2021 I noticed she would be very confused most times... after waking up from naps she would question why we were in someone's home (it was my townhouse) when the owner was not there.  I would gently bring her back around to reminding her that it was out house and that I was the owner and it was ok that we were there.  A few nights she got up in the middle of the night put her coat on and walked outside one time walking up to where the community mailbox was.  Thankfully I was able to coax her back in to the house during those episodes.  Then in May 2021 the nightmare began, mom woke one evening and while I think she was getting up to use the bathroom she became confused and came out onto the landing between the two master bedrooms and got too close to the stairs and fell down 13 stairs resulting in multiple fractures and internal injuries.  She was hospitalized for several weeks and then sent to rehab where she was for 7 weeks until the insurance deemed they were not going to pay any more.  I was told I could not bring her home to the townhouse since it was two floors and I work full time she could not be left alone.  I had to make a very difficult decision to transition her to full time care in the nursing home.  It has not been an easy go of it.  She has fallen once and rebroke her wrist, she eats very little and her dementia is worsening.  She lives in the past, thinks her parents are still alive and constantly wants to go home.  Each day is a new scenario played out in her mind which ranges from being at work, to being in someone's house, to being in a motel and that she doesn't belong there.  Needless to say this is all taking a toll on me although I am thankful for my adult children who help keep me grounded and my best friends.  I find though there are days I just can't face what is happening and I feel horrible to feel like that.  I love my mom, I hate seeing her go through this and I don't know what to do to make it any easier for her.  I know I am not alone in this struggle but I feel it would be beneficial to connect with others facing this struggle.  I have so many questions on how to deal with the many phases... it's confusing to me when some people say just play along in her reality and others tell me I should gently bring her back around to reality... I don't know what's best.  I feel like I am living a constant lie.  She asks me about her parents all the time and I am running out of things to tell her as to why they don't come see her.  That is why I joined this group.  Sorry if this sounds like I'm rambling... Any and all support is greatly appreciated.  

Tfreedz

Welcome Charlotte! 

I’m so glad you found this forum, it is a great sounding board and comfort to find so many people with answers, advice, and support. You sound like you have been through the gauntlet with your mom over the past few years and are still dealing with a ton. I’m so glad you found placement for her but I feel awful that it is still a struggle for you when you visit. I’m new to this, my mom has only been diagnosed for 4 months and lives with me since being diagnosed, so I don’t have much to suggest. Mostly I can say there is a support number to contact for immediate advice, also check out the support groups in your area, and of course search these message boards for advice on the specific things you are dealing with. 

I know for me, so much is trial and error. I’m trying to keep mom calm and happy, if I see her starting to get stressed about anything, I immediately try to redirect her. This has worked very well for the most part, especially recounting some of her favorite childhood memories or talking about what my dog has been up to. When your mom asks about her parents, maybe you could say, “I can’t wait to see them either, remember when your Dad used to take you hunting (or whatever they did together) with him? Or when your mom used to bake with you, what was her favorite meal?” The more I get her talking about her childhood the happier she seems to be. I’ve heard all the stories so many times now so  I can lead her to them to change her out of a negative mood. I’ve also heard that it is good to visit shortly before meals or activities so she has something to do when you leave. Also, have you tried bringing a small treat or gift for her to pull out of your pocket when you need to distract her?

I am so sorry this is so, so hard! It absolutely sucks to see our LO’s going through such pain and change. You’ve come to the right place and your mom is in a safe place now, so take some comfort in that at least.

Chuck91649

Hello Charlotte.  I just joined Alzconnected today.  I truly understand your dilemma.  My brother and I just went through the wrenching decision to take my dad out of the home he lived in for over 40 years to go into Assisted Living.  He was diagnosed with Alzheimer's this past November and, given his stage of the disease, the doctor said that he could not live alone any longer.  Dad refused help in the house.  He has only been there for about 3 weeks.  But he cannot understand why he is in this "hotel".  He has not been able to adapt to the place and still wonders when 1) he can go home and 2) when he can drive again.  No matter how many times we have explained his situation to him, he cannot grasp it. He also experienced a fall at the place on Christmas Day so I spent the day with him in the hospital Emergency Room and then stayed the night on his recliner at his AL facility because he was feeling so insecure.

He does also keep asking if we know where Mom went and when she will pick him up.  She died 4 years ago.  At first, I would gently explain to him that Mom passed away.  But now I just give a vague answer and then immediately change the subject to something that might divert his attention.  He is on the first floor of his facility so I was able to set up a bird feeding station like he had had at home (he devotedly kept up his feeders at home).  So often, I change the subject to the birds that are at the feeder at that moment (if it is the day time) or what birds he has seen during the day.  Then I give him a FULL report of the birds I am seeing at MY feeders to keep the discussion going.  It really does seem that finding something like that to distract him is working (at least at this stage).  So maybe there is some subject like that for you and your mom that might work. 

Wilted Daughter

Welcome

You are in the right place so "ramble" all you want it feels good to release. My mom turned 90 last month, I noticed cognitive issues a few years before 2014 but formal evaluation didn't occur until 2019/2020ish. I've been monitoring her status ever since. Her last fall at home landed her in the hospital/rehab for 30 days, I felt so badly that I had her discharged as soon as possible. Ninety days later, I'm looking to place her for respite so I can take a break. My point is that things happen for a reason and timing is everything.

Give yourself credit for doing the best you can and being able to make a tough decision at the appropriate time. Having the willingness to accept the things we can't change and doing what is best for all parties is a blessing even though it may not seem like it at the time. Bring or send her things to cheer her up (flowers, plants, candy, magazines...). When you can't visit call. Like time it will change so be hopeful for the best (her peace, your rest).

Best wishes

sandwichone123

Welcome!

Remember that she has a brain illness. You've no doubt tried bringing her back to reality and seen how well that works. It's stressful and doesn't help anyway, and that's why the guidelines have changed to just providing support. Also, you don't have to think of new reasons her parents aren't coming. Find something that works and stick to it--if they're from New Jersey you can say, "New Jersey is pretty far," which is a true statement and explains why they're not here. Of course you'll have to use her own beliefs.

Another idea is to address the emotions and not the specific question. When she asks about her mom you can ask her what Mom would be doing right now, which may lead you to an understanding of why she is seeking her parents' support. Generally asking for parents is a way of expressing insecurity, so find ways to provide security (generally not by breaking the news that they're dead).

You can also google Teepa Snow, who has many videos addressing these and other common problems.

J's daughter

You are doing the very best possible.  Hug yourself gently and keep moving forward.

Keeping your mother as safe as possible is your main goal, and you learned that your townhouse does not provide a safe place.  So you have made a safe choice.....nursing home care is a good option.  Yes, she fell.  It will happen no matter where she lives.  Yes, her confusion and symptoms are increasing.  This is the nature of the disease.  You will do best to "enter her world".  See her life through her eyes.  Her brain is broken and she really is unable to understand some reality or your viewpoint.  And there is no harm in walking alongside her.....both emotionally and physically.  There is nothing to be gained by trying to change her reality, to argue her misconceptions, to convince of what is real.  Recognize the emotion behind her questions or concerns.  Gently let her know you understand.  And then redirect.  Ask a leading question to learn more or to move the conversation to a calm place.  Find a pleasant and appropriate activity that distracts (for my Mom, that was sitting while I read "Little House on the Prairie" books or the most recent P.E.O. Record magazine, or the favorite distraction--an ice cream bar).  Don't dismiss her reality, but use it to your advantage.

And by having your Mom's basic physical needs being provided by the nursing home staff, hopefully you can return to being her daughter, advocate, best friend, loving caregiver.  

2.toddlers.1.Grama

Hi my name is Hannah and I just joined today as well. I'm so happy to see your post get so many responses!!!

PickledCondiment

Welcome Charlotte and Hannah! You've come to the right place;  feel free to vent, rant, whatever you need to do.  The individuals posting here have experienced what you're now experiencing and freely give of their insights and suggestions. 

I recently discovered a great quote I'm now using whenever required.  Is what you're saying to a LO a 'hurtful truth or comforting lie'?  I'm now using the 'comforting lie' as much as needed with my mother.  Amazingly, doing so has helped her attitude and mine.  Anything that gets us through the day and night with less stress is wonderful. 

While taking care of your LO, don't forget to take care of yourself. This is new territory for all of us, change is the mantra of the day.

Please post early and often, it helps you know you're not alone.

Bay

Hi, my name is Begonia and I am new to the group.  My husband has recently been diagnosed with early onset of alzheimer.  My biggest problem is identifying whether some of his actions are from the disease or just aging and how do I approach him with taking care of legal documents before he becomes unable to handle his affairs.

GenePT

Hi Begonia, my Dad is 94. After he fell and was in the rehab facility, we contacted a lawyer in that town, to go to him, to have him sign papers giving my sister and I power of attorney for finances and healthcare. We could then legally assist him. Since he was still able to pass a “mini mental” test, they deemed him competent to sign legal papers. In reality, he was pretty confused being in a strange facility, eating poorly and no visitors due to Covid. I agree with you, it is wise to get legal matters in order.

Rescue mom

Bay, welcome but sorry you have to be here. You will get more responses to your question if you start a new thread with your specific concerns. Right now you are kind of “hidden” down at the bottom of a different thread. It’s ok, nothing wrong with it (and you did get one answer) but more people can find it better if it had its own thread.

Just look for the green box near the top right on board, where it says something like “add topic” or “post question” . Click on that, and start your concerns. You also may want to check out the “spouses” board, sometimes the legal issues are different although that board and this one always have good general info. 

Carol.T

Hi Charlotte. 

I wanted to welcome you, too. I'm new to the board and a new caregiver. I brought my best friend/partner home to Rochester to care for her. She is at least 6 years into Alzheimer's.  She was living in Mexico for 5+ years, and was diagnosed there.

In 2019 she went to Fresno for back surgery. Before she recovered,  lockdown started. Mexico won't give her a new visa. Her daughter lives in Sweden. So I got her and brought her here.

50 years ago, we made a pact to take care of each other when we were old.  Here we are.

She is well into moderate. Short term memory is seconds now. It was minutes. 

Lots of us here with the same struggles.  I wish you well. 

Carol

Love&Light

Welcome, you've come to the right place. I too in the beginning really struggled with the guilt over 'compassionate lies.' But that was until I made the mistake of being truthful once and seeing the sheer pain it caused my Dad.

Now I honestly enjoy it. If he's on a cruise ship that day, I ask what port he's in and what the dinner plan is. If he's in business mode, I ask if he needs the invoices and we have a nice conversation on that. When he asks about deceased LOs I navigate those conversations recalling gatherings and specific memories like they just happened and always look for an opportunity to spark a laugh or chuckle for us.

There can be moments of joy and connection in this tragedy we are all living in. You will get there.

JILLGG

Hello All. Good conversations, amazing the number issues that are the same for everyone. 

With that in mind, I'd like to discuss "I want to go home." In some of my reading I read it is the mind saying this and the person is not necessarily requesting to go back to their most recent home. It is more an emotional call for a place of comfort rather than actually going home.

So, how are you handling this request from your LO? It is an almost daily request from my 92 yo mother. Tell me your responses and strategies.

Thanks.

M1

Welcome Jill, you'll get more responses if you start a new thread. Look for the green "add topic" button at the top of the forum page. Takes everyone a while to get used to the site. Good luck

merrycaregiver

Also a 'newbie' seeking support. . . is there room for me?

merry(not today)

Stuck in the middle

Always room for one more, Merry.  Have a virtual hug!

You can start your own thread by clicking the green "add topic" button near the top of the page.  More people will see you if you do.

mjj4114

Hi Charlotte. My name is Michele   I am new here as well and seeking support.  My husband  and I have my mother in law, diagnosed with cognitive impairment 3/21 then in 7/21 the diagnosis advanced to mild vascular dementia. We also have my 61 y o intellectually challenged sister in law with us.  Husband has brother and sister - neither who will help so I’m essentially the caregiver, managing care, medical appointments, the house, etc.  looking for support dealing with the behavioral changes- the mood swings and the lying.

Neverends

Hi Charlotte, Welcome and I'm glad your here. Being a caretaker is tough to say the least. I have been caring for my mom for 5+ years who has multiple  behaviors plus I worked LTC for many years. Are the behaviors new? Specific time of day? Is she aggressive? . When you can, let us know a little more. There is so much first hand knowledge here. You have come to the right  place. We are here to support each other.

Iris L.

mjj4114 wrote:

.  looking for support dealing with the behavioral changes- the mood swings and the lying.

Welcome mjj.  It will help you to understand some things.  What you call lying is probably confabulating.  This is stringing scattered bits of memory together.  The memory may be from far in the past or may have happened to someone else.  This is part of dementia.  The members have great ideas about dealing with confabulating.  

Iris L.