I have been putting off posting... well, now for over a month. Cathy has rapidly been going downhill & it is quite frankly hard to post about it... each visit is harder & it is difficult to find any humor in any situation/something to make you smile as you think of her.
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Here is an email I received from Jean this week:
Hi Beth, Brad and family
Haven't E-mailed you in awhile,
just got back from my daily visit
with my buddy Cathy, It sure is
getting harder and harder to visit
with Cathy, she's gone down hill
fast this past two weeks, lost more
weight, needs to have pants that
she can pull up with elastic waist
band, doesn't have the strength
to snap or hook jeans.... very, very
vocal also, I'm thinking she's having a hard time just swallowing
her own saliva???? I did take her
for a walk and then when I thought
she would like a car ride, she walked back into the building, first
time she's did that....But I will continue to visit and help when I
can... Love to all....Jean
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I have not seen her now for over 2 weeks. Gayle & I went to a caregivers conference at Mayo last Thursday. (I am mostly keeping up to date on these things for Brad & the kids at this point... I want to stay involved... in the know about this disease) On my way home I didn't stop to see her as I drove through because I was beginning to feel sick. I struggled with not stopping as I drove past... but felt that was the last thing she needed right now, getting sick. And to be quite honest... I don't feel that she knows who is or isn't visiting at this point. (so I don't feel as guilty not stopping... I don't have the feeling of 'letting her down' or thinking of her feeling sad because we have not came to visit) I know she is in a safe place & getting good care. We were there when she needed us... and now she just needs to be safe. It helps knowing that she has 2 Amazing 'Angels' close by... Jean & Barb S... they both visit her often in their free time and are a comfort beyond words to her & us. Gayle still visits daily (unless he is on the road for work) & we know that Ryan is close by & stops in when he can. The nurses are Wonderful, especially Angie! And Shelly, in activities, is Amazing with her as well... keeping her as involved as she can & caring for her!
I have kept a sticky note in my purse the past month... hoping to add little things to it to put in the blog. One funny story that jumps out at me is when Brad & I took the kids over 2 weeks ago. We were walking out of the home & headed to our van, the kids ran ahead of us & bent down to pick some wild flowers (they had done this the week before & given them to grandma... however they didn't notice she threw them directly into the trash), as we walked by them Cathy tapped Mia on the butt! Mia was stunned & Cathy just shook her head 'no' at Mia and kept walking towards the van. Brad & I just looked at each other & laughed... not alot of those moments any more. One tiny moment that passed where she was still being a 'grandma' & telling Mia not to pick the flowers... or at least that is what it felt like. It made me long for her... long for the Grandma my kids are missing. That day we got ice cream again & then stopped by the house... she fed the birds & sat on the porch with us for a few minutes & then was ready to go back.
Gayle, Brad, & Ryan's family went to the home a week ago for a 'family day'. Brad said it was a bit of a challenge to have her there. She is now in such a routine of wanting to be in the main dining area every day at 2 (coffee or bingo time) that she kept wanting to go in & finally did... sat at the table & waited for her snack & coffee... even though no one else was in there. Cathy's snacks are now applesauce & pudding. She still wants the cookies... you have to keep an eye on her or she will sneak one... and then she is coughing/choking. Meal Time is beyond difficult for the staff... we are told that she is constantly choking & difficult to feed... Gayle was in for a meal last Sunday and said it was so difficult to watch. She is even choking on her own spit.
She still sneaks out of the building... well, the alarms go off... but she is FAST! And they find her trying to get into people's cars or actually in someones car!! One man found her in his truck parked outside... seat belted in ready to go... luckily she didn't attempt to drive away since he had left his keys in the car. ~ Don't get me wrong on this... we are not upset with the staff that she gets out... they are doing their best! Understaffed as usual in the nursing home field & her unit is not a lockdown unit, only alarms... and they have long hallways & not alot of extra help to go chasing her down over & over again. That would be my one wish for that unit... a door that locks with a pass code!!! Instead of just an alarm!! It would give us peace of mind & give the staff much needed rest... plus prevent any accidents from occurring.
Gayle & Ryan have taken her to a few 'Music in the Park' events in town. Which have presented to be a challenge in themselves. We have not been to one with her, so it is hard for me to say how they are.
Family/Care Givers Conference at Mayo: It was a great meeting that would have helped us out tremendously 2 years ago. But, unfortunately most of what was covered we have already experienced in the past 2 years with Cathy. We had to 'learn on our feet' & create our own path... but luckily for the newly diagnosed at Mayo... they now have a bit of a 'light' to guide their way. (HUGE Thanks to Dr. Boeve & his staff for all they are doing to help families in the future!!!!) We did learn a bit about some tough issues: Hospice & Autopsy. Gayle is hoping to get Hospice in soon to help with Cathy. Autopsy... basically (in my unscientific words) from what we gathered if the autopsy shows Pick's disease then the boys have a 50% chance of inheriting the genetic 'problem' that causes FTD... if not, 20% chance of having the same type of signs/symptoms Cathy has. However, Cathy signed her forms stating NO autopsy... but keep in mind she signed these 'after' she was diagnosed with Pick's Disease & not before... is this really what 'Cathy' would have wanted?? Or was it a decision based on the fact that she didn't really think she was sick & felt someone was 'out to get her'?? This is a prime example of why EVERYONE should have their living will, advance directives, etc... done now!!! So their loved ones know their wishes & don't have to struggle with them... wondering... wishing... but knowing it is what they wanted.
We also learned at Mayo that the person with FTD differs from a person with Alzheimer's in the fact that they remember people much much longer, if not the entire time. They may forget names, they may not interact with people in a way that expressed knowledge of them, but they feel the connection with people they are familiar with... even though they do not show it/express it the same way they used to. We have all been struggling with this the past few weeks. Does she still know us? Does she really... or does she react this way when anyone comes to visit?? It is especially hard now that she does not speak. She is still VERY vocal... but just with sounds. ( In fact, it is difficult to take her out because she is increasingly making more noise & louder noise! Upsetting others... especially at Bingo!) When I visit I go back & forth about it... at times during the visit she seems to know me... but then she will just randomly walk out & not come back, I will find her sitting at the dining table. It makes it easier... knowing that she is not sitting there waiting for visitors... but yet do we really know how she is feeling??? If she is feeling anything??? If she is sad or capable of hurt??? ARGH!!! You could go round and round and round... She seems to connect with Chase & our nephew. But not with Mia & our niece... is this because they are boys & remind her of her own boys when they were young?? Or is it because she cared for Chase when he was a baby??
Jean told me this story the other day about a visit she had with Cathy. It was right after her diagnosis & Cathy had told Jean something the Dr. had said to her: at some point she may be running down the streets naked without a care in the world about it. Cathy had told Jean this would not be her, she was too modest to let that happen! Yet... recently Cathy has been found taking clothes off in front of visitors (much to their discomfort!), standing in the dining area in her jeans & a bra... Cathy would be horrified by this. And Thankfully she is not aware, it is one of the only gifts this disease has given her... the ability to not realize at this point what she is doing. Or at least it seems this way.
I know there is much more going on in her day to day life that I do not know... the ones taking care of her now know her better these days... but I am Thankful for that. I want to still hold on to the memories of her... and not just this disease. I don't want to be a caregiver anymore... but a daughter in law. Making the decision to put her in the home was difficult... & the worst day of our lives up until this point. But... as Dr. Boeve told us at the Mayo meeting... you are able to be a loved one again (a wife, husband, son, daughter) once they are in a care facility. You are able to take off the hat of being the caregiver & put back on the hat of being the loved one. You have given them the gift of caring for them. And now you are able to have peace with that... comfort in knowing that for a little while... you did your best... and now you can just be. Be a loved one.
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