Many years ago, I read "What Every Woman Should Know about Men" by the late Dr. Joyce Brothers. In it, she talked about the phases of relationships between men and women, and what changes occur in each of those phases. For men over 60, she described them as needing their wives. In fact, if I recall correctly, she said that not since they were small boys in need of their mothers, has their level of need been as great as it is in these “golden” years and, she added, there’s something to be said for being needed.
As a caregiver to a husband suffering from an incurable disease, his need for me may appear obvious. He needs me to do those things which he physically cannot. I become his arms and legs. He also needs me to assist him in doing things for himself, e.g., fetching items he uses at his desk or work table.
Then there’s his speech. As it deteriorates, his self-confidence has taken a nosedive, and I have become his voice. I arrange appointments, argue with Medicare and converse with physicians on his behalf, looking frequently to Dale for confirmation.
And even while facing extraordinary challenges, Dale still needs to contribute to our marriage and our household. Sometimes, all this takes is a nudge, like placing a bottle of “Round-up” on the floor of his scooter (after all, weeds don’t care how the executioner gets there), or bringing him a screwdriver to perform a “fix” on a door latch. Like lots of married couples, he also needs to borrow my glasses when reading a menu.
All these things are important and I try to do my best to satisfy them, but there are other subtler, more meaningful needs I must fulfill. Dale doesn’t ask, but I know my husband. I have to convey daily through words and/or actions that my love is unconditional, and that I’ll be beside him forever in this world. He needs to know that I think of him as “my guy.” He hasn’t morphed from a man to a creature just because his body is breaking down. He will always stand tall in my eyes, even if confined to a scooter or wheelchair.
Regardless of how much Dale needs me right now, it’s eclipsed by how much I need him. Dr. Brothers didn’t address this aspect. I love him and I can’t imagine life without him, so I don’t allow myself to go there. How could I live without my rock, the one who grounds me when I engage in flights of fancy, like aspiring to become a female James Thurber. He laughs with me when we watch comic Whoopi Goldberg trying to figure out Mick Jagger’s lyrics in "Jumpin’ Jack Flash," and I cry with him every time we see John Wayne die in "The Cowboys."
I happen to be addicted to world affairs and international politics, I can name all the major players in the Middle East, but couldn’t tell you who the mayor of Dallas is. Dale knows, though, and I rely on that. (I think he knows there’s a better chance that I might one day attend a meeting of the Dallas city council than an emergency session of the Knesset.)
Dale and I sleep in the same bed, and we like it that way, in spite of some occasional snoring from both of us. I need to know that he’s beside me through the night, that I can touch him with a foot or an arm and be reassured that the night will pass in peace, and that we’ll awaken to another day to live and love together. When the time comes for a hospital bed, we’ll have to get a queen-size at best, or a trundle at worst – for if either of us goes into “that good night” before the other, we will both "need" to be holding hands.
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CarlaL48
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Hi CarlaL
In your last post you suggested I told more of our story. Well, perhaps "the value of being needed" has played an important role in our journey with PSP. Some cold objective facts first. Many years ago my wife had rare but frightening choking problems that I attributed to a previous bout of adult whooping cough that may have weakened her swallowing muscles. Then she had a strange personality change, with marked withdrawal and slow speech, that worried the whole family. She would not seek help during this period, and it strained our relationship. Then she started falling and breaking bones. She spent about a year and a half having assessment, exercises, and psychological tests, at a local hospital falls clinic. She was then diagnosed with breast cancer and within a week she had a right mastectomy. Her geriatrician saw her after this operation, and with respect to her falling etc, could only give a diagnosis of a "multifacited" problem. This was no diagnosis for me, so I diagnosed her a few weeks later with PSP. Sadly, no one in the medical profession had checked her eye movement. I did a test myself (and found vertical gaze palsy) and suggested to every medical person we saw (oncologists, GP, breast cancer staff etc) that she had PSP. They were all inexperienced in knowing about this disease.My diagnosis was confirmed 4 months later by our neurologist.
I guess I started grieving the day she was officially diagnosed her with this wretched disease! I think she could have started symptoms many years ago, but I have calculated from her personality changes and balance problems - about 5 years now.
Now subjectively. My wife has always been independent and the strength of the family (4 children, 10 grandchildren). Now she is reduced to relying on me for everything. This is so hard for her, especially since she now finds it so difficult to communicate her needs. I have no hesitation in being her carer 24/7 despite the many frustrations. I have a personality (problem?) trait, that I feel I am the only one who knows her needs and can safely care for her. I know this is irrational and I have to learn to trust others to help when I leave the home for business/errands etc. I am in the fortunate position of having good health and retired.
Once, I depended on her for all sorts of support. Now she relies on me, and we have to learn on a daily basis what this PSP is doing to our lives together. She has a brilliant long term memory of family and friends, where she can provide me with intricate details (even though it takes her a long time to express her thoughts, and needs some help in finding the right words). She has recently taken me back to those good times and recalls many things I've forgotten or cannot ever remember.
We do a lot of reminiscing. We laugh together as much as possible (a good side of the PSP pseudobulbar affect) even though it means changing her "pads" as a result! She hums and sort of groans a lot (which I might talk about in a later post), and I hum with her.
It's the little things that can seem important but sometimes frustrating. Our Physiotherpist wanted my wife to try and help with certain things like buttering her toast. I agreed that I had "taken over" too much, and I was happy to give her as much stimulation as possible. The only problem with such things is the extra work it may cause me - she now butters her toast but puts her sleeve in the butter (eyesight problem) and hence - more washing.
This is turning into a long discourse. Stopping now! How important it is to feel needed!!!
Oh, Strelley, your post made me cry. I've no doubt that your "independent wife" agonizes over her current role and its demands on you and your family. But your attitude about stepping up and taking over being a privilege should reassure her, even if she can't express it. Or, maybe she is expressing it when she reminisces with you, or when you hum together.
You're right, it's those little things that seem so darn important at times. Dale is damaging every door frame in the house with his scooter. In the long run, it's not a big deal, but in the short run, I know it's I who will have to repair and paint them all, so I can get irritated when I hear that familiar thud.
I really do feel for you both as long term partners and also carers 4 your spouses
did you want to know everything about this PSP? I have it and
I did and I feel my partner does not but wants me to do more things than I can do.. in a difficult way too
eg when we go out together I link arms with him with my stick but often freeze and he says to take my time and then get going again..
which I can do eventually but it takes me a long item to get through a doorway
people are great in this working class town where I live in NW ENGLAND and help me a lot for instance in the toilet where I might well fall over lovely ladies help me up and then link arms with me ot get me back ot where my partner is waiting for me
he says I am being "silly" when i fall over and I know it si v frustrating for him when I DO fall which on good day at home is 4/5 times but it can be as many as 30 times like in the past few days has been terrible 4 falling
and many bruises as a result
but it could be worse I know .....
I have had a bit of a rant and now have to get my s hopping order sorted for delivery tomorrow
Another brave lady, you totally humble me sweetie. About all these falls Jill.....has your neurologist not suggested getting you a motorised wheelchair for getting you about safely, the body can only take so much damage with these constant falls, before my mums legs gave up, she was more down than up, she had some really terrible falls, needing many stitches on too many occasions to mention. Repeated bangs to the head can lead to dementia issues later on. Maybe you could think about asking for one, they are provided by the NHS, gives you more independence and hopefully curtails some of your falls.......just a though my lovely.
I should have read your response before posting mine below. We're thinking alike. Jill needs more safety in her life -- now we'll both worry about her until we get an update.
You can't be falling 30 times in a few days -- that's way too dangerous, dear. Please talk with your doctor right away about some safety measures - like a wheelchair instead of a walking stick. And it sounds like your partner needs to hear the safety advice from your doctor, too. You know you're not "silly." You have a devastating disease which interferes with your coordinated movements.
When Dale was first diagnosed with Parkinsonism, he told the neurologist that he'd walk with a cane to the mailbox and fall anyway. Immediately, the neurologist emphasized that our whole way of life needed to be reorganized around "safety first."
Please talk with your doctor and let us know what he/she says.
Just wanted to say how moved I was by your post, I'm actually drying my eyes as I type. I have a huge amount of admiration for you, that you are still managing to have that husband and wife relationship. Same goes for Strelley although he already knows how fabulous I think he is. While trying to help care for both my parents when Dad was still alive, after some time I emotionally felt the difference between Dad & Daughter morphed into Dad and carer. It was only after he went into a care home that I managed to reserve it back.
And I admire you right back, sweet JoJo. Yours was a heavy load to bear. My own father died of a sudden heart attack and my mother was sick for maybe two weeks before passing at the age of 88, so my seven siblings and I were blessed that no one had to care for either of them 24/7.
I'm glad you were able to regain the Dad/Daughter relationship before he passed. One of my comforts after my Dad died was that I had been a "good daughter." It's amazing the things that give us cheer, isn't it?
I shall certainly look at getting a motorised wheelchair - I have an indoor one from when I fractured my ankle badly 6 years ago but the tyres need pumping up and an old fashioned bicycle pump I s needed for it so plz do not worry about me too much- it can only get better in some way or another1
Yes, leaning on each other is a real comfort to both. I don't mind doing whatever it takes to care for my dear wife. Often that means some real dirty work. God bless her she never balks when I attempt to help her in any way. I noticed that her coordination when brushing teeth even with electric toothbrush was not good. I said one day "How about if I brush your teeth?" and, I must admit, I was surprised when she said "ok". I know what you mean about touching in the night. I usually go to bed after her nine o'clock time and always touch and assure her I'm here and all is and will be ok. We laugh over the "mistakes" that happen during the care process. We are living in the day and not looking or planning ahead.
Carla, Thanks. This isn't my first rodeo as they say. My first wife of 31 years passed away from CJD another (but more rapid moving) brain virus. I'm now remarried for another 23 years. Time flys.
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