My oldest son, Patrick, came to visit last week - all the way from the East Coast. It seems like the distance between Northern Virginia where he lives and North Texas where we live gets farther every year. He might as well live on the moon. Or perhaps it’s the span of time between his total reliance on me and my growing reliance on him (and his brothers) that is getting shorter, coloring my perspective.
The sweet sound of baby coo’s proclaiming me the center of his universe is a vivid memory to me, but no memory at all to him. His nuclear family has shifted, as it should, to his wife and children, and I am now an ancillary. Nonetheless, I am cherished, and Patrick came to assess first-hand how we’re coping with PSP, and to lend some practical advice.
Isn’t that funny? My motherly cautions, “Wear a hat. It’s cold outside” have been replaced by filial cautions, “Don’t lift that. It’s heavy.” When did our roles reverse?
As young people, we turned to our parents, school advisors and other elders when making major decisions like where to go to college, and what to study. With little life experience under our belts, these decisions were daunting and we appreciated guidance in evaluating our choices.
Now, it is we, the old folks, who are faced with daunting decisions: how to spend our remaining days, where to live, what kind of environment do we need? But no longer does inexperience hamper our decision making. Instead, we’re encumbered by too many life experiences in our repertoires. Essentially, we can’t “see the forest through the trees.” We feel overwhelmed and want to put our heads in the sand until this disease “goes away,” until we can resume our “normal” lives.
Patrick, however, and his brother Tim, who lives nearby, are able to cut through our paralyzing clutter and present simple options. We listen, and choose, not easily, but with more clarity than we had before. We’ve decided to sell our home (which I’ll address in future posts). It’s too everything - too big, too expensive, too much work, too barrier-fraught for Dale to navigate.
I don’t know what we’d do without the help of these sons who buoy us while we are at sea. They are our living, breathing Gantt charts and they’ll be there to help us bridge each milestone.
At last, I understand my mother’s words from a June night 26 years ago. We had just left the hospital in a haze of grief after my sheet-clad father was pronounced DOA following a sudden heart attack. We gathered at the family homestead to support Mother and to begin the dreaded phone calling. At some point, Mother put her handkerchief in her lap and looked at our faces, her babies, “I don’t know how people with no children get through something like this.” At last, I understand.
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CarlaL48
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Thanks Carla. A touching reminder of the blessings our children can infuse into the complex tapestry of our lives when our "old age" presents us with frailties not imagined in our youth. Sadly, not all who pass through this PSP (and similar) veil of woe have such children to rely on. Like you, I have (4) wonderful children who support us and give us practical advice that shows their own growth in "wisdom and compassion". I know my wife and I will rely on them more and more in the future, even though we try not to encumber them too much as they have families of their own to nurture and guide.
Just one totally unnecessary light hearted remark. My origins are English, and you excel in the dying art of beautiful prose, so I thought I might suggest (to be purely mischievous) that the phrase "cannot see the forest through the trees" should really be " cannot see the forest for the trees" where "for" means "because of". Hence, its meaning being ...."so involved with the details of a situation that one loses sight of the larger issue". I think it's origins go back to the 1500's.
Strelley, we are truly blessed to have such thoughtful, loving children.
Also, thanks for the "blue pencil" on the adage. I'll never use that expression again without substituting "for" for "through." BTW, as English origins go, you Brits will appreciate that my late mother-in-law was a Scot and majored in (what else?) English at the University of Edinburgh.
This is the original saying, but it is often misunderstood (so I did not use the term "wood" when replying to Carla who lives in the USA, where they use the term "forest"). Of course, " a wood" in England is a name for a small forest, but sometimes people think "wood" in this phrase means the substance wood and not a group of trees.
I will let your mother know he answer to her questions, since I face this journey without the support of children But, I understand the Lord does not give us more than He thinks we can handle. We shall see. Christine47 (a.k.a Zy)
So good to see you here. You may not have children, but look at all the friends you're rapidly cultivating on the PSP sites. We're in lockstep with you, my friend, and will do all we can to support you from afar, including sending up lots of prayers.
I was thinking about that statement today as our Pastor said it to me a few years ago, before PSP entered our lives. Today I looked skywards and said, "Lord, how much do you think I can handle as today I don't think it can be much more?" Then I heard a bird singing its heart out and saw a whispy cloud in the blue sky and immediately felt better. I hope and pray I can handle what's to come.
I'm with you, NannaB. God's creatures and creations can so quickly put a smile on my face. I keep a bowl of water (about 1/2 gallon) several feet from my kitchen window, and freshen it every day. Right now, there's a sparrow sipping. A bit ago, it was a squirrel with his paws on the edge, drinking away. Sometimes a dove or blackbird will drink, then dip -- all loving a few drops of fresh water in this Texas heat. And if His eye is on the sparrow, how much more does He care for you and me?
The life skills I wish to instil in my daughter - "responsibility and independence". You have done this - Congratulations Carla and Dale.
It is wonderful to read that Patrick and Tim are there to provide guidance and support for you and your husband. It means they identify with you as being much more than 'Mum and Dad'. They are giving you respect and appreciating you as their parents are also 'real' people, with ideas, thoughts, aspirations and interests.
And who rightly so could do with some help at this point in your lives. So girl, continue to acknowledge the support being given and remember to continue to take it - you deserve it!
Aw, Alana, your young daughter is well on her way with such a wonderful role model.
I mentioned above that my late mother-in-law was Scottish. When I announced that we were naming our second son "Timothy," she was a bit put off and asked brusquely, "Are you trrrrying to make these boys Irish?" In the end, I think she was well pleased with how they turned out - in spite of their Irish names.
I've just brewed a pot of coffee, sweetie, and will pretend you'll be here to share a cup any minute.
Carla, Two things in response. First, I do "connect" every day to this website, CurePSP and the Yahoo tauopathies group. I feel I am a part of a community, a little in the background now, reading others experiences, learning from them. (Yes, Peter3, I purchased the grape juice and honey, and have looked into the Mangar Elk.) I look forward to your posts, and get nervous for you when I don't see one. No pressure there, dear!
And last night gave a rude awakening to "what do I do when alone?" It has been hot and humid here (high nineties -100s) and three days ago our air conditioning went out. Dave is researching getting a new one and a new roof, both things we have been putting off for too long. I don't even know where to start on that BIG expensive project. We have been keeping the house bearable with fans. The last night at 12M the power went out. Dave checked the breaker and it seemed OK. I called the called the DWP and took a pad out to sleep on the backyard lawn. (Yes, I was laughing at this point thinking this is totally "old school.") They came a little after 1AM, and were able to get the power back on. Then the automatic watering system started and wouldn't turn off. Dave was able to find the correct fuse from the list he made on his computer to turn it off. So, note to self -- everywhere the name Dave is, I will need to know how to do this. The good news is Dave is OK enough to be able to do this now, and the bad news is the steep learning curve ahead of me. I know I will need those prayers! Thank you!
Oh, Christine, I'm so sorry. It almost sounds like a "Laurel and Hardy" routine, but when you're going through it, it's not the least bit funny. I do want to know if you were still on the lawn when the sprinklers went off, though?!
I, too, have a learning curve to overcome. I've made most of the major financial decisions for years, but I haven't been the bill payer. Dale gives me a spreadsheet so I know where we stand, but he's been paying bills online for a number of years. I haven't the foggiest notion, but I'll think about that tomorrow at Tara also. Isn't that our shared catch-phrase?!
I simply could not do without this site! You guys are a stitch! My husband and I are both in a second marriage, each with 3 children. There is no love lost between siblings and step-parents. I am sad for this but understand because of the differences in rearing. My children are nearby; my stepchildren are not. They can't be bothered and I try not to ask my children for help with their stepfather though they would do anything asked of them. That's just the way they were raised.
I have been deathly ill for over a week and have had to come to a terrible decision. I can hardly take care of myself let alone my husband. So on next Thursday he will go into a private care home. In the last 2 years he has become totally disabled and I have had to handle purchasing a one-story home, moving into it, trying to sell the other home and keeping it "showable," had major surgery for cancer, all while trying to take care of my husband and our finances. This current illness is the proverbial "straw."
Every bill we have is past due because of this illness ( defined as a virulent viral attack of some sort - is that redundant?) and though we both hate the idea of a separation, I feel so fortunate to have found such a good family to take care of him. The cost is reasonable and they have lots of caregiving experience and hospice, too.
My children have helped me contend with all those afore-mentioned life-altering events - except my husband's caregiving. It has required hours and hours of their time, muscle and brain power. I could not have asked for more. His children came and took what they could of our "stuff" that we had to dispose of. That was the end of their involvement. When he went into the hospice homecare program some weeks ago, his kids decided they couldn't afford to come. They would have to "give up" vacation time and money.
Sorry, this has gotten to be a rant. But I was responding to something which I now have forgotten. I guess children can be either a positive or a negative when dealing with PSP. I'll blame my forgetfulness on being ill. My brain doesn't function well on so few cylinders!
What a heavy, heavy load, Caroline. I'm so happy you've found a home which will give your hubby quality care and I hope it's nearby so you can visit often.
It sounds like your kids have really stepped up to the plate when it comes to you. I know they have their own lives, but I pray they'll be able to continue helping you to get well and maybe help keep your former home "showable."
Thanks so much, Carla. I can't tell you how much everyone on this site means to me. I had another rough night with the terrible sweats but I have to believe I am on the way to getting better.
Yes, the home is 15 minutes away and since my husband is not so keen on going, as you can imagine, I can visit very often. I may even "hang out" there if the couple doesn't mind.
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BTW, as English origins go, you Brits will appreciate that my late mother-in-law was a Scot and majored in (what else?) English at the University of Edinburgh.
Going into care
Lost my Dad 
