Parents caring for the parent support thread (Part 2)

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@mompop, I am so glad for you, and your dad, to read about that improvement. How great that your Dad noticed! Your story suggests patience! We are persisting with gabapentin this week. I have noticed an increase in appetite (my mother has lost 35 pounds from not eating) but agitation continues especially late afternoon.

Anemia is improved so that is not an explanation for being in bed. I actually think she had uterine bleeding and lying still in bed may have stabilized it.

An aide told me there was a possible opening in memory care, so I emailed an administrator and again asked. My mother is now the one and only person on the waiting list. The admin said he would know yesterday but since I have not heard, someone else who previously committed is trying to decide.

Every time I go in there, the aide and sometimes the nurse say “Thank God you are here.” She calls me up to 35 times (her cell broke so these have stopped as of Friday), calls the front desk (10 times in 30 minutes, because she only knows how to press 0) and presses the emergency button over and over and over. The nurse did a video that is so pitiful, of her going out in the hallway looking for me or help, pale, breathless, confused and agitated.

I am in NYC for a few days helping one of my kids move. Calls from my mother are less frequent because she dials “0” and desk person connects us, but are angry and outraged in tone. “I don’t understand why I am not allowed to talk to my daughter.” type of thing. Then I say “I am your daughter.”

She obsesses about “going home” (she has been in AL for 7 years) and driving home to get her clothes. She claims to have lived in an apartment across from a nearby mall, and invented a 5th child, a daughter with the same name as me but a double-?! She obsessed about getting a fictitious car that she thinks has been parked for a month in a nearby town. These circles of thinking go on and on until she gets her sleep meds.

I have not gone away this long since all this started. Four days! I was going to hire someone but the phenomenal volunteer from hospice went yesterday and is going today, and the nurse from hospice and AL staff are aware. I asked them to remind her where I am because her agitation is worse without knowing. Originally I was going to say I was sick. No matter, she cannot hear me on the phone so I had to ask staff to explain my absence.

Fingers crossed for memory care opening! @mompop hope the improvement continues. Let us know!

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(((Hugs))) to you, and we are all hoping that opening in memory care is meant for your mom.

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It is incredibly difficult to be the one and only person for the aging senior. It’s like having your toddler grabbing your ankles, but so much more sad and hopeless and unfair for both the senior and the caregiver. Two times in her last 18 months, I left overnight to help one of my adult kids. The first time was one night, within 100 miles, she took a huge step down mentally,from which she never returned to prior sentience. Because of everything else going on, we did not directly attribute it to my absence. Then about 6-8 months later I was gone for a couple of nights and wow, another huge drop in mental ability, and again, never regained prior function.

It was really sad to see, and extremely unfair to me. Do I give up 100% of my life in fear of her declines? Do I choose to do a couple of things and cause dramatic failure which is horrid for her and which then affects, dramatically, the level of care needed? A no win situation to be sure. In hindsight, I would not skip those important kid times, they needed me and my entire family sacrificed their needs for many years as we all dealt with their failing grandparents. But that is tough to say, because maybe every day life would have been vastly better?

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Ooops, clicked post before I was done. The above musings were meant to be directed to CompMom and others struggling to be all they can for their parent and not lose sight of their own life and needs. Compmom you have dedicated such extraordinary care for your mother, enjoy your four days, you deserve them!

For a failing parent struggling with dementia, I think it is a true statement that you can never do enough, they become so needy and time loses meaning, places lose meaning, you are their touchstone.

Remember, Compmom, you have to do the best you can to also take care of yourself and your needs so you can see this journey through to the end in the best possible way!

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@somemom very good advice you give. I also tried to remember “what would my ‘real,’ competent parent want?” I think my parents would have been mortified at how much of my life was taken up with managing their lives and dealing with phone calls at all hours. Of course I needed and wanted to do it, but when I would have my moments, I tried to remember that my mom never would have wanted that. She always joked about never wanting to be a burden etc.

My kids saw me dealing with everything and I explicitly told them that I did not want to turn their lives upside down for me.

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I confess I am going back a day early! I have had a wonderful three night stay with my daughter and helped her decorate her office at the new job. Twenty five phone calls a day from my mother. Frustrating to not be able to explain why I am not there. Thanks @somemom!

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Oh, my, I do recall days of 20+ calls for repetitive reasons!

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Compmom, your mom sounds like many of the residents in my dad’s memory care unit. I hope she is moved there soon- they are truly angels on earth caring for these very demanding, yet sweet Alzheimer’s patients. Have you considered telling the facility that you are ready to move your mom to a different nursing home that is accepting memory care patients? I know you don’t want to move her, but it is amazing how accommodating a facility can become if they think they are losing a full pay person.

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My sister got a notice on receiving a $30 credit through a federal program for internet service. She tells my mother about it on her call this morning (she calls every morning and gets my mother going about something). I tell my mother that I got it but haven’t had time to do it yet.

Within minutes, my mother is on the phone with the internet provider about the credit. They talk her into getting faster speed internet, they’ll be out to install it on Thursday, it will cost $78 rather than $55 and then she can use her $30 credit from the federal government. To my mother, this makes sense. She hardly uses the internet at all so why does she need faster service? She then calls the federal govt number and they will send her something, will take 10 days, then she has to send back. OR SHE COULD JUST WAIT FOR ME TO DO IT, LIKE I SAID I WOULD!

I could kill my sister sometimes. If she doesn’t want to do it, don’t mention it to my mother.

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The facility wants to move her to the memory unit but doesn’t have an opening. Over the weekend a family who had been promised a spot previously, and was deciding, decided yes . At this point she is driving staff crazy.

Hospice is having yet another big meeting about her. Gabapentin is not sedating her, she seems angry more often, and she is talking about her parents being next door and about her car parked in the next town and tells me she has another daughter with my name. In other words, change in mental status.

She can still converse with nurses which makes her seem better than she is. I am deciding on what to advocate for.

I tricked her into getting dressed and going in the wheelchair today and she was ashen, sickly and weaving around so not sure she is even heatlhy enough for a memory care unit that gets them up each day.

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@somemom I’ve been thinking about your post over the past several days. How did it come to pass that you became the one and only person for your mother? Do you have siblings? If so, they couldn’t take turns either taking your mother or coming to stay with her while you got away?

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@CTTC my mother is in an assisted living facility. One sister has been estranged for 25 years, one brother is in Florida, and one brother has two homes but lately has been closer and visits after work. He and I also chat and vent but he is kind of a “let the professionals do their job” kind of person whereas I take a more active role in medical management (and order colostomy supplies, change the colostomy, manage finances and taxes, take her to MD’s or do virtual, etc. etc. ) and have invoked primary proxy. That brother and I both have P of A.

For whatever reason, she calls me 25 times/ day. I think she sees me as being available to her. Since my brother started visiting two months ago, she also calls him, generally 10 calls to him if she can’t get me.

I was interested to read that perserveration is not uncomfortable for the person repeating the action. It is uncomfortable for us. I made the decision last night to request that gabapentin be stopped because I think it is activating her. I spend more time lately so I can evaluate and make these decisions. Since the proxy is invoked, I speak for her and can decline meds.

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Just a note that some of the meds used for agitation can take up to 6 weeks to reach their maximum effectiveness.

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Yes, but along the way problems seem to be increasing. It’s hard to know what to do when a person may not even have 6 weeks left!

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All you can do is the best you can with the knowledge you have at any given moment.
You’ve navigated a very hard path for years and done great. Forgive yourself for being human and not being all knowing. You can second guess yourself because of decisions made for years to come but don’t do it.

Sometimes we spend our time trying to “fix” a problem (I know I did) rather than accepting a situation that really was never able to be fixed at all no matter what I did. Maybe short term I helped a bit but that was it (yet that was good too). I think it was my way of coping with the inevitable.

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@CTTC Ah, yes, I was the primary caregiver, with some (not enough) help. But when I typed that I was her person above, I meant I was her emotional/mental touchstone person, like a little kid with Mom. And that is, in some way, more suffocating than the physical care. She relied on me as her one and only safe person.

I see it with a sister in law now, her sibling lives with the Mom & any time another sibling takes Mom out, the minute she gets out of the car, before they have taken her toward the door, she is hollering for the caregiver sister. That’s what happened to me, I was the rock in my Mom’s crazy demented world, the only thing/person she could rely upon (in her mind.)

I don’t know that there is any way not to have some one become that, but it sure is an awkward position. And it’s helpful for everyone involved to recognize the irrationality and overwhelmingness of that need.

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I was that person for my mom, except that I lived in Michigan & she lived in Florida. I fielded many, many difficult calls from her at work & at home. My dad was her day to day caregiver, and two of my brothers had the most flexible schedules so were able to help our dad the most. But I got the calls 
 they were often pretty heart wrenching, which made returning to work after a call pretty tough. I was on the phone every night for hours with her. It was so hard.

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Thanks for explaining. I wouldn’t have been capable of doing/being that for my mother.

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I got somemom and compmom mixed up. Need my glasses! :slight_smile:

I found it hard to go away as the “safe person” even for three days but I did it! (My mother called me twice during the last sentence!) Had a great time with my daughter in NYC and walked 21 miles in two days!

@gouf78 I am not trying to be perfect- far from it. There is a big meeting tomorrow and I have to decide my opinion on meds. I am not the one trying to “fix a problem.” I want her left alone with no more endless trials of drugs to sedate her. I don’t even think perseveration is the same as anxiety. This hospice is known for using drugs for everything. I think “acceptance” lies in getting others to stop trying to fix the situation.

I don’t need to forgive myself for anything. I am just problem solving.

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Compmom, you are amazing!

My sister said Dad told her he’s going to ask a lady out to dinner. It’s kind of hard for me to think of his doing that, but I’m happy for him. He is such a social person. It must be hard to be by himself when his caregiver goes home. He is doing so well that I don’t think long term care insurance will pay for the caregiver much longer. That will be a tough transition for him.

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