Hi all, not a question really, I just want to share a note I was inspired to write to my son & DIL, given my fresh perspectives gained from reading your post’s for 5 months;
“Hi, I just want to take a moment to let you know that I have been reading a blog written by family Caregivers of parents & spouses who have Major Neuro-Cognitive Disorder. Reading this has really enlightened me to begin to understand how this last year, with me moving into town to live near you, has turned into a very negative experience for both of you. Please know that I honestly did not anticipate that, and I CERTAINLY did NOT want that. I know right now it doesn’t seem that way to you, but I promise, deeply in my heart, that I have truly tried, to the best of my current abilities, to make things go very positively. I hope maybe someday you will be able to accept that.
In any case, I sincerely apologize for putting this experience on both of you. It has been so much more difficult than any of us anticipated.
Please know that overall, in the last few months, I’ve progressively been trying to limit the amount of contact either of you will need to have with me on a regular basis because I realize that at this time, connecting with me is a trigger for you. You’ve both already got extremely beautifully, full lives that are filled with meaningful things you want to be doing. I am so very proud of each of you, for who you are becoming, for what you’ve accomplished & are accomplishing.
I wish for you both as a couple & as individuals to not have unnecessary stress in your lives, to be very happy together & individually in your lives & I in no way want to be any sort of impediment to that.
I’m deeply grateful for ALL of your support & assistance, & for all that you’ve done & are doing for me. I simply couldn’t ask for more.
You’re a wonderful couple & you both truly compliment each other. Be careful not to spend more time in therapy than you do out enjoying
each other & making good memories.
Think of spending time together-enjoying each other-like making bank savings deposits. All the joyful memories together that you ‘deposit’ make it easier to overlook small things that might otherwise annoy you. It’s just something that always helped me.
Anyhow, hopefully this note doesn’t irritate you too much & maybe, it will even make a little bit of
heartfelt sense, someday in the future.
I do love you.”
That’s the note I was prompted to send out to my son & DIL today, because of the fresh perspectives that I have gained from reading your truly vulnerable post’s. I appreciate how much you’ve shared from your hearts.
The new insights I’m gaining are invaluable, albeit my progress is more gradual than I’d like. I do, most of all, truly have an overwhelming, deep love, gratitude, & desire for the well-being of my son & DIL. Although they may not be able to realize that right now, hopefully, in time, they will.
If I have any question, it would be this; How many of you have had a moment of awakening or awareness, perhaps after your parent died or after they went into assisted living, somehow after the pressure was off, where you realized that you DID actually have love for your parent & you realized that they actually DID LOVE & CARE for you , it just may have looked different than you expected?
After a broken hip incident, I had to move both of them into Assisted Living. The "pressure was not off" at that time, however.....in many ways, the pressure was even worse.
I've always loved my parents, and I've recognized their love for me, which should not be confused with feeling burdened with the role of caregiving. It's a big job with lots of mental anguish involved, lots of decision making, all sorts of things most of us are unprepared for. And overwhelmed by.
If your son is having a hard time believing your diagnosis, know that many men live in denial about their mother's suffering from ANY KIND of dementia or cognitive impairment. They can't wrap their minds around such a thing and feel the doctor must've made a mistake. Therefore, maybe you're "tricking" him into helping you when you really don't need it.
He should, first off, educate himself about your medical diagnosis. Speak to your doctor about what your condition looks like now vs. the prognosis down the road. Ask for reading material to help him learn all he can about Major Neuro Cognitive Disorder.
I don't feel like you owe your son and DIL an apology for getting sick and moving nearby to get a bit of help from them. Isn't that what family is for? My ex is THE biggest neurotic pill you've ever met but when he was diagnosed with stage 4 cancer, my son and DIL moved him into their home for a whole year. My DIL almost had a nervous breakdown, but they did it. And he's had clean pet scans for 7 years straight now.
We "children" all get irritated with our needy parents sometimes, it goes with the territory. Make sure you don't move in with your son and are agreeable to Memory Care Assisted Living when the time comes. If you don't have funds to private pay, apply for Medicaid. Planning ahead is the biggest gift we can give our children. The biggest gift they can give us is love and caring about our medical condition so we can live our best lives, with family nearby to visit with. As my husband says, family is not everything, it's the only thing.
BUT, FAMILY IS EVERYTHING, & I am secure enough in my ego to swallow some pride especially if it might move us closer towards the middle of connection. I was very lucky to be very close to my grandparents at all stages of their lives, & I was able to be close to & to help care for each of my parents when they each struggled through multiple heart operations. And when my elderly MIL became ill with ovarian cancer, we were very close. Even though we lived a state away, I helped her much as possible & at one point was willing to move her into our home, but the cancer moved too quickly & she passed before we could do that. All of this to say, I am the definitely the type of person who has always brought home friends ‘in need’ & family is always welcome, etc.
OF COURSE , I’d prefer that my son & DIL be more like me…but ironically, ( I’ve always said that God has a twisted sense of humor) my reality is that they’re not at all like me. So even with only 4% of my thalamus’s left (that’s what our brain processes information with) I can figure out that it’s not going to be good if I try to force them to be or do something they aren’t.
But, I totally agree with where you’re coming from & I REALLY REALLY wish everyone else did too!
To answer your question . I think each caregiving experience is unique in its own way and yes it does bring out some unexpected feelings and emotions, as the changes in LO and the need to be their caregiver changes and challenges the relationship . During caregiving my father always showed his appreciation and love . My mother being a narcissist and having dementia was not always a nice person , but I know she loved me as much as she was capable . Towards the end she mellowed out the last few months and was nicer .
Still waiting and my last LO has been gone for months.
I valued the help I got from this group, but I need to leave it behind to move forward.
I purposely would never move near my children. My daughter has suggested this and I, who have long told her I don't want her involved in my aging care, have told her she may not know it now, but the best place for an aging parent is 12 hours away. The tendency when we "move by them" or they "move us nearby" is that they more and more take care of us. And we age more and more and can only become more dependent on them. This has repercussions no MATTER what good intentions we may have. It is this appointment and that, this shopping and that. And it has an impact, as I said, no matter our good intentions.
I miss being near to my daughter more than I can say. I spend a month with her every summer and she visits here for a week on average twice a year. It isn't enough. We love to chat and garden and cook together, to go to the occ. casino for fun. We truly love being together. But I am 81 and she is 61 and I know now that the aging process is setting in real good just what living near her would mean to me and to her. And it would put a burden on her life that I simply won't allow.
I think your letter is beautiful. Together you and your kids made a planned move to have you more near them. You have recognized it has had an impact. I hope they won't say "Oh, Mom, this is fine, we are GLAD to...........blah blah" which would negate the truths you have said to them. I hope they will acknowledge the impact this has, I hope you will discuss it as you have more needs and I hope you together will decide when ALF is appropriate.
My brother, when diagnosed with probable early Lewy's Dementia would have loved to stay in his little last SoCal home. I in northern CA. couldn't be any support to him there; he went into ALF. I KNOW WHAT THIS MOVE MEANS, and how difficult it is to make for both side of the equation. I know it to my soul. But it is a fact of our aging, of our living too long. It isn't as tho the government will issue us the magic pill for that day we can say we are well and tired of it all now, and ready to go, having had a lovely life thanks so much. We have to go on. And yes, when there is family there is impact. Emotional, and in terms of relationships.
This is all tough stuff. Thanks for being open, receptive, genuine, understanding. Thanks for sharing your letter to your kids and your thoughts on all this. It's important we honestly discuss it, and if I would add anything to your letter it would be "Please be always brutally honest with me about your feelings about any impact I currently in my aging have on your own lives. There will be times when the truth is hard to take for us all, but its value cannot be overestimated."
In all this, be certain the paperwork is done. The DPOA and the advance directives for medical, the wills and trusts and what have you. Make this as easy as you are able, showing them where everything is and how everything stands.
But, your son needs to except your diagnoses. If you haven't yet, take him to a Doctor visit with u and let the Doctor explain to son what is going on and what the future will bring. Make son realize you don't expect him to Care for you or bring u into their home but you will need help.
The best gift you can give your son is to get your ducks in a row. Make sure you have a Will if you have assets. Assign a DPOA and Medical POA. Hopefully son will except the assignment. It will make his life easier in helping you. Its a tool, not a power. Make it immediate. This does not mean as soon as you sign the papers son is in charge, it just gives him the ability to help you as you decline without Doctors needing to declare u incompetent before he can help. Know when ur ready for an AL, if u can afford it or Long-term care with Medicaid paying if you can't. Maybe, looking at ALs and LTC facilities now and chosing one or two before the time comes.
I don't honestly believe that any of us that are parents ever want to be a burden on our children, at least I don't, and I've already made it very clear to both my daughter and son that I don't ever want them caring for me as I get older and am no longer capable to care for myself. but want them to find the best care facility for me, and for them to just come visit once in a while.
I wish you the very best as you go forward in your diagnosis, and hope and pray that in time you and your family will have peace and acceptance.
God bless you.