I am just curious as to what the average age of carers is and how do you cope with the lifting, bending pushing and lack of any social life. I am just turning 70 and ha e been doing this since 2007 when I still worked. No relief in site! I am finding my back is sore all the time, my wrists and shoulders are sore and feel that by the time this is over I will probably be in a wheelchair.
Age of Carers: I am just curious as to what... - PSP Association
Age of Carers
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Folliott
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I'm 55 my husband (PSP/CBD) is 57. We've he's probably had this for 4-5 years. Our social life is next to non existent. He doesn't like to go anywhere, talks to a few neighbors and that's it. I am still able to work, not sure how much longer though. But I really don't consider that a social life. I miss our friends and going places together. Makes me feel very alone. So not dealing with that very well, some days better than others. The physical side of caregiving - not to bad for me yet, but I can see me getting to where you are in the not to distant future. Hopefully someone has some ideas for you...a massage every now and then?
LynnO
Hi LynnO,
my husband is 59 this year and has CBD. Started symptoms 2009/2010.
He goes to an Hospice day care, one day a week which gives me and him both a break.I can't leave my husband and haven't been able to do so since January. I know exactly when it was because I used to belong to a choir and went there on a Monday evening but since January, when I came home and found my husband on the floor, I haven't been able to leave him alone.
Some of our friends have been brilliant, still including us in everything or asking us to go places with them, whilst I must say one couple in particular, who were amongst our best friends, do seem not to see us so much.Maybe they can't face the difficulties (not for us but them)or inconveniences that take place when they see us, I don't know....that is what it feels like with them sometimes!
Anyway, we get out and about most days, are going away for a long weekend with my son and his family next month,and I invite people to us for lunch which is better for Roy then the evening, or even go out for lunch.
On the days when Roy is at the hospice I might find the time to meet up with my friends, or go shopping, or sometimes just relax. I do find happiness in the smallest of things these days.
I did get a course of complimentary massages at the hospice which was lovely and helped me to relax.
We are having tracking hoists fitted tomorrow hopefully will help with the caring for Roy.
So, what I say is if you don't get to see your friends. Then invite them to you , maybe at the weekends and ask your GP about Hospice daycare and take advantage of anything complimentary that is offered.
Hope you can find some little rays of sunshine in all of this.
Take care
Den x
Hi Den, your life sounds very much like mine. Hospice day centre, complimentary treatments, out most days, friends in. We even have a couple of previously very close friends who we hardly see. I think they can't bare to see the deterioration of a once lively, happy friend. It doesn't take much to make me happy either. i had a friend round for coffee this morning and we sat in the same room as my husband so he didn't feel left out. Another friend turned up a bit later. They both left at the same time as a sitter arrived so I took myself out to lunch at the local garden centre and bought 4 gorgeous roses to fill a space we have in the garden. By the time the sitter left I was feeling relaxed and am looking forward to planting the roses tomorrow, although I'll have to keep running down the garden to check on Colin. Hopefully the heavy cloud will have moved on and he can come out in his chair with me.
I hope you have a good day tomorrow as well.
X
It does seem funny, that the closest friends sometimes are the ones who can't handle the change. Understandable, but still sad.
We live about an 1 1/2 hours away from most of our friends, we move about 4 years ago to a farm before we know what was going on. Glad we did, wouldn't change it for anything, except the friend part. I can't get my husband to go and meet halfway with friends, car ride makes him very anxious, and he's afraid of not being able to have a conversation when we get there. He's not too bad if they come to the house, he can get away if need be for a few minutes. We are going to try to go on a vacation, we'll see how that goes. He says he won't have to talk to anyone, so he thinks with anxiety meds he will be fine. Time will tell. At least it's something to look forward to. Have a good trip with your son and family. Some days we have to look harder, but there is always a ray of sunshine somewhere. : )
LynnO
Hi, I am 60. Been caring for S for about 2years full time, 4/5 or more years leading up to this!
I try not to do any actual lifting. But do go to an Osteopath regularly, to keep things moving!
Hate the loneliness, no social life, no married life. Feel far too young to have given it all up. Will be too old when this is all over. Although my Mum has got herself a new boyfriend, in the care home she is now living! She's 86 with Alzheimer's! hope for us all!
Lots of love
Heady
Hi all I am 65 been looking after George for 2-3 years not him being able to do much, even before that he was not doing much, feel lonely at times, miss having friends over for dinner, maybe it is my fault as well, feel to tired to do anything.
Took my granddaughter out today to the west end to buy her a birthday present, George at the centre, our daughter picked him up. I came back at 5 George did not look very happy, he is not talking, he is more than likely upset, that I was not home, I have had a wonderful day with my 13 year old granddaughter, she makes me laugh, and we walked miles, and had a lovely lunch together, so I can handle to cold treatment.
Heady hope you are feeling better.
Love to you all.
Yvonne xxxxxx
OH I am so happy for you/!!!!! See I told you good memories would be made.......dont' worry about your mate he'll get over it....
avb
Hi Heady,
My husband is ready to go to bed quite early these days, sometimes 6.30! That is both my best time and my worst time. It is the best time because it is my quiet time, the time I can read, watch TV , catch up with friends on the telephone, write(I write poetry) in fact there are a million things I can do in the hours between when Roy goes to bed and when I decide to go to bed.
This can also be my worst time because it is the time that I really miss Roy, just talking and laughing with him, even just sitting with him quietly watching TV together like we used to. I tell you, one of the things I miss most is him going out in a commercial break to make me a cup of tea!!!
So, I make my own tea these days and so do you I expect and I know at least Roy is safe next door in the bedroom. He sleeps soundly through the night these days which is a godsend because a while ago he (and I of course)were up and down all night!
Take care
Denise x
B and I are still up and down but usually only once per night as opposed to 3x. I do know how you feel. I put B to bed and if I don't stumble over myself due to exhaustion, I sit here and read or write. I have been trying to write and read more during the day. B is in his chair listening to his books. We are usually done with exercise and lunch, so it's quiet. I wrote earlier the loneliest time for me is when I do the bills. B used to do them. and now I ask him to help me JUST for the company. doing the bills is such a reality that some day most likely very soon, he will be totally gone. It's an extreme emptiness that hits me, like no other time. I understand and am comforted that heaven is awaiting him. But I still cannot get this worldly emotion to fully leave me. Will all of my life feel like it does when I do the bills? Will I find the strength to live happily as a widow? Or will I slip back into that deep dark bottle and once again try to drown my sorrows in self pitty and alcohol.....yuck I am slipping now, damn. Shut up!!!!!!
At any rate I feel your pain I have your pain It is a pain that loves to share itself with as many as will look its way.
Look away from the pain embrace the joy that is that which we still have...and do not let negativity reign in your heart.
Peace now, God forever
AVB
You will always have us here on this site. Far cry from your husband, but still better than drowning your sorrows! : ) I often think about being alone, I'm hopping it's a long time away. and although I like being alone sometimes, this will be completely different. It's scary and sad, and your right an extreme emptiness, but I think we will all be able to make it through and learn to live with the loss. It will just take time and each person will be different. As everyone says, we need to make memories now and find enjoyment in each day. Worry about what will happen at some point later.
yes indeed...peace now, God forever.
LynnO
Thanks LynnO. I do not often feel this way and usually can get out of it quickly. Too many good things to think about or stuff to do that does not give you time to wallow.
Truly I am happy and joyful most days.
I hope you all are too. May be 54 feel like 80...but hey who said 80 year olds cant be happy eh?
AVB
Hi i'm 55 and my husband is 64 i have been caring for him for 4 yrs he has CBD he is getting worse now.he can no longer walk or stand we used to love travelling but we cant any longer.up untill a few months ago we used to go out for a meal once a week but he doesnt want to go anymore as he spills most of his food.i miss our social life but most of all i miss my husband he used to have a great sense of humour and loved life.he is a shadow of his former self.
I miss my husbands humor too. He used to have a great and dry sense of humor, now when I think he's kidding around, he's being serious.
He very seldom laughs anymore, and I have to explain things on TV or that people say that are funny, it could be in my delivery, but he still doesn't find humor after I explain. We can still go out for a meal, but a lot of the time he can't order for himself, so I do it. And if the waiter/waitress walks up to fast, it startles him and he about jumps our of his skin. Life is certainly different than what we expected!
LynnO
Yes, I have only been helping Bruce up since summer of '13 and my knee now refuses. the pt told me today that I have a sprained ucl(?)....anyway lift with your knees . so what does that mean? that means make sure the other body parts can handle the weight just as well as your knees! . Especially lower back and and arms.....start biking with resistance on a machine ten minutes a day. lift 5 lb wts with a little bend in your arms over your head or just curls 15 minutes a day or do cardio; it works your whole body all at once as well as your heart. Yoga and or tai chi for your own balance control and your spiritual balance.
I am 54 I have been noticing wierd things for 5 years and been acting on them for 2 years.
That your just now asking these questions makes me think you are pretty darn strong!!!! I had to quit teaching in '14 so this is my first full year without a job since my kids were not in school. My kids are not in school again as they have all graduated from college several years ago!
If you are feeling sore note the things that make them sore twists, constant aching weakness in certain muscles...etc. got to gp or pt and have them assess. don't let it get worse! I hate to say this honey, but we're not as young as we once were!
Stay Strong,
AVB
Oh and as far as the social life? never had much of one so I don't know what I'm missing there...Infact I think I was more upset about that when I was in my 40's than now. I used to take my self out to the pubs at least once a year...had a blast....Though I would have to overcome the loneliness of going by myself....oh well I don't even do that anymore! at 54, I feel like I am going on 80! hahah
AVB
I am 64 my husband with PSP is 68 next month. He was diagnosed in September 2010 and I managed to stay in full time employment until April 2011 when I retired to look after him full time. The last 6 months at work were very stressful and I regularly had to go home because either my husband or my dad had fallen.
I am in good health but do have to be careful not to strain my back which has caused me problems. I have to use a standing hoist to move my husband from chair to commode to bed to wheelchair. I don't know how older, less fit carers manage.
Hello , I am 69 and my husband is 71, I find it totally exhausting , and the caring has really affected my back and my knees. It is particularly hard at present cause we are having to move to a bungalow cause of this wretched illness. I have had to view and purchase , pack and arrange everything on my own . At one point I very nearly cracked, but the moment passed ! I have no help at present and my husband does not go anywhere. We too don't eat out as he spill his food a lot and I too find that some friends have dropped off. I don't know how bad he has to get before any help is given , I suppose as long as we can manage there is no need. Obviously some days are worse than others. I do leave him at times for an hour , on the two ocassions he has fallen he has forgotten to press his telecare system button he wears . I see some of the carers here are younger , it must be hard for them socially I think ,
I am 61 and my husband is 67. He was diagnosed early this year; however, I believe he has had this sent at least 2009. I have noticed a deep decline in the past month. More falls, slurring speech, mentally unstable, coughing, choking, incontinence all have progressed greatly just in the last two weeks. I am hoping to get my last year in and retire next May. It is going to be a long, hard school year for me. Social life, none. He weighs around 290 and I hurt my knee when I try to help him up out of his recliner chair - which he gets stuck in. I could not get him up today and thank goodness our son was here. But he can only come one day or so a week for a few hours.
I do not know how all these wonderful people are able to handle this. I have a great admiration for all of them/you.
My one release is my painting. I do watercolors. A little at a time in between it all.
LynnO in reply to
I'm looking into one of those recliners with a lift. Thought that would help my husband out of the chair. He can usually get up by himself still with a struggle, but sometimes he needs my help. Maybe this could help you out too?
I have one of those and it is wonderful. He can get almost to a full stand with it, then I can help shuffle him around to his transport or wheelchair.
in reply to LynnO
Yes I have been checking into one also. I'm hoping Medicare will help out a lot with it. I know they are expensive.
Doglinton in reply to
They're brilliant. We got ours second hand. Worth looking out. Jean
Folliott in reply to
I got mine in a regular furniture store not a medical store and it was $549.00 compared to $1200 at a medical store.
A friend of mine uses a portable "upeasy" chair lift as a less expensive option and may be used on a variety of chairs.
I have just celebrated my 60th birthday. D is 73 and was diagnosed with PSP in June 2013 although I think he had had problems for at least 5 years before that. When we were younger the age difference between us didn't seem to be an issue at all. he was always younger than his years in attitude and abilities and was a very active and fit person. We had a lot of friends that were younger than him and more my age or younger.
I am his sole carer at the moment and am finding it very physically demanding. I have had back problems in the past and have to be very careful with bending and lifting. I struggle to help him transfer from his wheelchair into the car, shower chair, toilet, riser-recliner etc. He is almost totally confined to the wheelchair now and it is very heavy to push and to lift into the car. The wheelchair Service will not let us have an electric one and anyway I do not know how we could afford to buy a wheelchair adapted car. I don't know what we will do when D is no longer able to transfer to the passenger seat which looks as though it will be quite soon as his ability to stand has almost gone.
We have moved fairly recently and have found it nearly impossible to make friends in a new area as most couples activities are inaccessible to us. I cannot leave him for very long as he needs help to,be taken to the toilet/use the bottle. D's speech is still quite good and he can pass the time of day quite well with people but what he says often doesn't make much sense and he gets very muddled. We no longer go out to eat as it is difficult to access most places and we can not have a proper conversation with each other so there seems little point in going out to eat. I find the demands of caring very demanding but the worst thing is the lack of sensible conversation and simple companionship. I often feel bad that I find this difficult as I know it will be much worse when he cannot communicate at all.
Oh well that's quite enough moaning. I expect I shall feel more positive in the morning - it's amazing how tiredness colours one general outlook! Rest assured Folliot that you are not alone in finding it all too much.
Vicki
I am 67 and C is 68. He was diagnosed in March 2013 but had first symptoms in July 2010. Now I do everything in fact in past week I have finally given up on letting him feed himself because he chokes much less when I feed him. We have a few local friends who pop in and come for lunch when I have the energy to make it. And we have lots of friends from all over the world who come and stay (we live in south west Turkey) which is how I have been able to manage thus far. I am physically strong and can still lift C when he falls, but it is getting harder as I have lost weight. In fact he looks much better than me, a fact that is regularly commented on when we do go out and meet people on the street. Right now we are on our own and don't expect anyone to come and visit until 1st September when my daughter is moving into help, her idea. I too miss social life and travelling. I have almost given up reading because he can' tread anymore and I feel guilty that I still can. Have taken up knitting instead but spend more time sorting out mistakes than actually producing a garment. We thought we'd be Darby and Joan watching the changing patterns of light in our garden, sitting on the terrace at 80. now it seems unlikely he will reach 70 and I will have a whole new chapter that I never expected. And on that note I must go and get him out of bed. Like others who have posted an hour or so alone in the morning and same at night is also part of my survival strategy.
But now I shall plod on into yet another PSP-riven day.
Pat
Hello,
We must be among the oldest on this site. C. is 81 and I am 78. Fortunately I am very fit and can cope so far. I watch my back as I have some arthritis. I don't know how it will be when he gets worse. He was diagnosed Nov. '14 but had had signs for a few years. Most of all, like everyone, I miss the person. He can still talk but is slow and has cognitive issues. I miss the energy and enthusiasm he always had. It is lonely although we are blessed with supportive family and good friends. It is interesting to observe the differences in how others cope with these changes !
We were lucky to have had so long together and we travelled a lot, so have good memories to share.
A bleak outlook though !
Jean
I can relate to everything you have all said . I am 78 and John is 81 . Although he had or I should say WE ! For many many years he was diagnosed when he was 70 ..
I struggled big time supporting him both physically and mentally . We have ten steps to the front of the house and getting him to and from the car was a nightmare , But we did it np until he could no longer drive the car safely . that was another blow I do not drive myself .
We got to where we are now though he is much further advanced not being able to leave the house even for hospital appt because he is hoisted at all times either into or off his bed commode or armchair . he finds coping with company very difficult so I am careful who visits the house .
I am still young at heart even if not in body so much every part of me is sore / painful / stiff but I keep moving as much as possible . we get carers in at night and in the morning and recently started in the afternoon for two years . We have had !!!!!!!!!!!!!!!!
126 different carers to date . . I do everything on my own otherwise . I learned how to use the verily house (. Easy easy lol ) and have only recently let go of the strings with the morning carers seeing to his private area . not having ontinuirpty I didn't feel happy letting any Tom Dick Or Harry do it , /continuity ) should read .
Do leave him on his own for two how's one lunchtime to go for a coffee with my daughter and the same on Dat night to go out and meet friends at a club we both belonged . I hated going alone at first and also felt guilty . that has eased and I do know hOw I,portent it is for me to make the effort .. bSaturday Night !!
so chin up everyone . it's what we do for love and ALWAYS LOOK ON THE BRIGHT SIDE OF LIFE DADADADADADADADA. AS Eric Idle says .
I hate Parkinsons with a vengeance it had robbed me of the man I love most I miss his smile the twinkle that caught my eye 60 years ago witty intelligent conversation .
o yes and the cups of tea he also made me if ever I asked him to .
please excuse the spelling and wrong words . paragraph should read HOIST !
It's funny how there is a recurring theme through out these posts. Everyone is describing their husband as a fit, healthy man, full of energy, loves to travel and I know from the past, always into some kind of physical activity! I would love to see a detailed analysis of what everyone with PSP use to do. I know they say, there is no common denominator, but nobody has ever asked S for any information about his life history. Probably, they leave it too late to start asking for the information.
By the way, we all feel the same as well. Missing our husbands, for what they use to be. There's a surprise!!!
Lots of love
Heady
I'm 45, G is considerably older. Have been looking after her for at least 5 years although she was only diagnosed last year.
We rarely see our so called friends, most deserted us when we got together as they didn't approve, 2 friends we see every now and then don't understand how hard it is and tend to wind us both up so better not seeing them.
Neither of us has ever been overly social so it's not too bad.
Had a lovely email last week from a nurse and Dr we used to see for acupuncture, asking if we'd like to meet up for afternoon tea. Emailed back to say G had deteriorated greatly saying we only went out for hospice etc, but invited them here not expecting them to want to do that as they are are at least 30 miles away.
However, how wrong I was! they are coming Next Thursday with homemade scones and cake 😃. I emailed to say I was happy to get things in, and had a reply that all I needed to get were tea bags. Now to me, that's how real friends are.
Yes, those are true friends!! Glad you have them. I think the older you get the less difference age separation makes. As long as you love and care for each other...who cares! It's not the quantity of friends, but the quality.
LynnO
I AM THE ONE WITH THIS WRETCHED DISEASE BUT MY WONDERFUL HUSBAND FRED CARES FOR ME SO WELL THAT I HARDLY EVER FALL - HE IS 78 GOING ON 79 AND I AM 69 - IT IS IMPOSSIBLE FOR ME TO GET UP OFF THE FLOOR SO WHAT FRED DOES IS HE GETS A LEATHER POOF FROM THE SITTING ROOM AND HAULS ME ONTO THAT AND FROM THERE HE CAN GET ME UP
Shash a little too you might find useful .........
if for instance you are in the floor and maybe can Rolland hold into something such as the chair pouffe whatever , You husband might be trying to help you bu keeping up off the floor . ask him o get a dining chair .
turn rhe chair over so thT it upside down , push it under your back . maybe use a pillow or cushion to make cooper cumfy . . even if he had to help you are more comfortable and give you a breather . It does work I have used it .
do hope you can follow that .
I am 55, my husband who has PSP is 65. I guess in many ways I'm lucky, we live in a small village surrounded by supportive friends & family, although I am always hesitant to call for help as I have always tried so hard to be self sufficient. Our social services are there if I need them, and the OT seem to fulfil all the requests I make without quibbling. The doctors are not a great deal of help, although sympathetic, but there again there seems little to offer as there is no cure. My husband had a liver transplant back in 2003, so really I have been a carer since around 2001 when he started to become ill. I have gone through resentment & many low points along the way, especially before the PSP diagnosis as I had come to the point where I didn't recognise the person I was living with at all. His personality change was such that he became a not very nice person, especially to me. I don't know what I would have done if I had not been able to speak to my family, they have kept me sane. Unfortunately I have no relationship with my husband now, other than to be a full time carer to him. He has not managed to be a companion in any way for a long time & communication becomes even more difficult as the illness progresses. The few years of hell leading up to his diagnosis have, I'm afraid to say, killed any of the love we had, but I will always care for him. I feel this very acutely and have cried many tears, but I try not to dwell on what I sometimes think are 'wasted' years because there is nothing that can be done about them. The experiences have taken me places within myself I never imagined, and I know I am certainly a stronger person for it. My answer to all this is to keep myself very busy. I am lucky enough to work from home & I also run a small B&B so there are always people coming & going. Those around me are caring & always make allowances for my husband's condition, and I try to keep him involved in anything I think he can cope with. I miss my soul mate, and sometimes now can hardly remember what life was like. I know I must just take things one day at the time & try to get through this somehow.
P is 76 and I am 70 in November and up until about 5 years ago P went swimming almost every day and played golf twice a week. We used to go to football matches, race meetings and go on holidays. He`s always been a sport nut and not used to sitting around indoors, so this illness is taking away all of the things he used to enjoy.
I too feel that my companion has already been taken away from me, there have been no jokes, general chats or him making tea for me etc for a long time.
We have some good friends who still phone or visit but even they don`t come so often. One of P`s brothers visits once a week but the other hasn`t been for over six months, even though he lives locally.
I no longer feel like a wife but merely a 24/7 carer as P is very demanding and I can`t continue with any of my hobbies - so this site is a saviour !
Chins up and keep going everyone !
I don't know how you do it??!! I'm 57 and my brother is 60. If you can get them, there are different types of equipment to help with lifting and transferring your loved one. We don't have them but my sister does, her husband has Parkinsins.
My mum is 80. I am 55. I am very lucky because she lives in an assisted living facility. I also have private aides who feed her meals. She cannot move at all on her own. She can only eat puréed food. I'm thinking that the best puréed food might be baby food. If there is any grit in the meat, or a lump in the oatmeal, that will wreck the entire meal. She will be fixated on that gristle and unable to eat. So mostly she eats yogurt, smoothies and ice cream. The nurses in the facility were upset that I was giving her ice cream because they said it has the consistency of milk. So I had to have the doctor write a note saying that ice cream was allowed. I feel that the ice cream is the only thing she enjoys. Otherwise she likes to watch tv. Live music is also great, but there is not enough if it where she lives.
I started to have John Complan but found it went straight through him and caused awful wind , he is prone to this anyway ..
milky creamy isn't really good for them but as u say they enjoy that . maybe u could add liquid sauces gravies etc to a dinner and purée it it
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