Hi there, every day i think I’ve reached my tipping point, but I don’t really know what that is or will be. For those of you whose loved one is already in assisted living or even hospice, what was your tipping point ?
My husband wants to stay in our house and we have a caregiver who comes twice a week, plus my daughter lives with us but the interrupted sleep, the cleaning up after an “accident”, the problems swallowing etc are really getting the better of me.
Looking forward to hearing your experiences
Caroline
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Caro2132
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Caroline my tipping point is when George keeps banging on the side of his hospital bed, even after all his medication, it is so hard to keep calm when you are so tired. I am laying in bed and listening to bang bang bang it does my brain in, after a stressful day, of him being unwell with a urine infection and high temperature I feel like giving up, just want a bit of a normal life xxxxx
Everyone will have a different point when they decide this. Some people may never reach it while others turn to outside care full time right away.
Mine came when I noticed myself "snapping" at other family members for no real reason. After a few conversations and some self "looking inward" I realized something had to change. Neither my Dad or wife and son were getting the appropriate amount of my attention. That's when I contacted dad's doctor to discuss options, a nursing home was picked as our best solution.
I believe whatever you decide will be the best decision for you.
Somedays I wonder how long I will be able to continue. Like you, I get help from a caregiver twice a week. I primarily use them to be able to leave the house . My husband is a two person transfer. Therefore I am dependent on my kids to help me get him up the other 5 days and get him in bed each day. He cannot stand at all alone. He is doubly incontinent and does not speak . Yet, he’s still aware and I believe he is more comfortable at home.
I think my breaking point, as long as I remain able, will be my inability to sleep. I can manage if I get a good nights sleep. Without sleep, I’m miserable and unable to do anything right. Also, although I’m struggling with his physical care ( my back is hurting and I am terribly anxious and depressed) I’m hanging in there. If he starts choking and needs to be sunctioned, I’m not sure I can do that. I guess we never really know.
We just do the best we can. Best of luck to you. 👍🏽
I agree with all above, and particularly the problem of lack of sleep: If we are strong and healthy (enough) we can take on mountains...but if sleep is deprived, then we (I for sure was-) are decimated and every little problem seems huge and we have no reserve to draw upon. The burden for caregivers is doubled or tripled if there is cognitive/FTD disturbance as well as physical demand.
Obviously finances play a big part, as some are in a situation to get government-funded help and some are not. That makes a big big difference. If you can get help every day, and Get Out and be refreshed, however that happens, it will help you more. Still - there is night time: and you have to get sleep to survive!
So I think the big question is: What would it take for YOU to be sustained enough to take on the immense burden of care? Answer that question for yourself, then look to see if there is a resource you can afford/access/find provision for....If the answer is no - then....................
Anne, your mention of finance is important . In the US care facilities generally begin as private pay ( a year or two ). Then when family funds are diminished Medicare may offer assistance . A year or two of care can take all of ones sayings etc. That’s a difficult situation to be in. I think we all just do our best. It’s a struggle.
The tipping point is when your own health is being damaged. A neighbour who was caring for his wife was found dead by the care workers, who called to help him get his wife up and dressed in a morning. He had had a stroke. Our local hospice offer free care at home which allows me to get out to the shops, they also offered night sits to allow me get a decent night's sleep. Maybe worth a try. Take care! Ken.
My sister died taking care of my mom because she didn’t address her own urgent health care needs until it was too late. My sister was 49 and had moved in to care for my mother who lived alone. So this is a very real concern.
Oh my goodness, I feel for you. My step mom cared for my father who had PD and she passed away from heart problems while my father lived another six months.
Before I retired I had over 500 employees that I handled. Now my wife has PSP and there are days where I'm not sure I can make it to the end of the day. My wife depends on me, plus I have a caregiver everyday for 8 hours.
One would think that I should be able to handle the stress of one person. I understand your frustration, as I too feel that everything is out of control. I have found that if I need something that my wife's doctor prescribes, I will have to fight with the insurance company. Fighting the insurance company had becone my life.
The sad fact is I can no longer depend on my wife for much.
My wife was a doctor, and found a study that used a medication that slows down the progression of PSP to a snails pace. My wife's doctor told me that my wife has had PSP longer than any other patient that he knows of. She is like the Everready bunny. She is going on 16 years with PSP, and still can use a walker, still can speak, and evan laughs at my bad jokes.
I love my wife more than I can explain. But the sad fact is she isn't the same person I married 30 years ago. There are times when I question if I did the right thing in putting her on a experimental drug.
Then I realize she is still with me, and another day goes by. It's hard but it comes down to that fact she is my best friend. I too have health issies, but I have accepted that things have changed, and she is still with me. I realize that I'm babbling, but like yourself there are those days when I lose control.
It all boils down to one thing, I love her so much, and she needs me. Life isn't fair, but we all have bern told this since being a child. We do the best that we can, and tonorrow comes as it did the day before. I wish I could make better sense of things. None of us can. We take what we can, we cry when no one is looking and life goes on. It may not be the life we wanted, but we do our very best. Beating yourself up doesn't accomplish anything. I wish you the best.
My mother is most likely going on her 14th year of CBD (based on my observations of first symptoms). She was what people would have called a health nut for the majority of her life (swam a mile or walked 4 miles a day, ate only organic, was not on any type of medication until last year). One doctor stated that she was the healthiest sick person he had ever met. And just this past week I was talking to her long time doctor (my doctor as well), and she was musing over the possibility that because her underlying health was so good, she had inadvertently created this cruel longevity with this disease - all that to say, I understand the second guessing of the use of the medication.
Thank you for sharing your story. It is good to share how wonderful and accomplished your wife is/was; our loved ones deserve the recognition for the awesome people they are - when no one else would see that now!
And please don't second-guess yourself for the course of treatment you chose. I can vehemently say I would give anything to have my love back alive with me. Even as restricted and exhausting as caregiving life was, it was a life with huge and meaningful purpose, and..I Had Him. Xxxx
The decision was taken for me really. The home care company said they couldn`t continue as they felt things were becoming unsafe (for them and for P) and simultaneously my GP told me I had to consider a nursing home for P and to do it then rather than in the future while I had time (and my health) to pick a home of my choice instead of waiting for a crisis and having to accept whatever was available.
Even though I resisted as long as possible, I knew it was inevitable but it is never an easy decision.
BREATH! Breathe and count to ten with your arms above your head and your eyes closed before reacting to an unpleasant situation. I find this very helpful. Something tells me that you will know when the time is right. I’m not there yet but I’m hoping that I’ll know too. Just be sure to take time for yourself even if it’s just a ten second breathing exercise. If you can escape outside for a minute soak in some rays and try to smile then go back inside with a refreshed mind. Take a short walk around the block if you can or better yet, go treat yourself to a nice massage. Take care of yourself so that you can take care of your loved one. Hang in there!
I lost my barely 55 year old son to PSP May 4, 2017. We live in the USA and free/subsidized help is limited here. I have LTC insurance (I have paid $183 a month for decades....my view is that I am paying LTC so that I won't need it). My son declined it thinking he would get it later. The first symptoms of PSP came to visit him March, 2014, just before his 52nd birthday . One of my posts is called "Parkinsons to PSP".
My son wanted to live at home...was pretty emphatic, especially after being hospitalized for 7-8 days with his 2nd bout of aspiration pneumonia. Five weeks after being sent home with a PEG, and symptoms worsening, he asked to stop being fed.
I cannot tell you how much I miss my son. He was the best. I remember how very difficult it was for me (I will be 78 years old next month) caring for him. I finally hired a young man to help. Some days I didn't think I could go on with his care. It was difficult to see his decline....loss of sight, loss of speech, loss of bodily functions, seizure, unable to get up off a chair/bed without help, times of pain. These MID-LIFE BRAIN DISEASES take all that you have and then more.
Looking back I can see where the choices before me were both unacceptable.....he dying vs being cared for at home.
I think the shares cover almost all the bases. DAD'S HELPER, RAINCITY GIRL, and GRAFIXAPN...for me, I found especially realistic, they touch all the main challenges.
Each of us knows/will know what our "tipping point" is when we change "what/how we are doing" with our loved one. Believe me, You will know.
The shares have brought back the reality of that HORRIBLE disease. My son made the decision for me. I dealt with lots of guilt as the aftermath....but the gift he gave was to the both of us. I AM EVER SO GRATEFUL THAT HE WAS MY SON FOR 55 YEARS AND THAT HE WAS WHO HE WAS.
Blessings...............Margarita (Los Angeles, CA, USA)
I wrote a long-winded whiny reply to your question last night and lost it before I posted it. I took that as a hint. So, what follows is a condensed version:
I took care of my husband who suffered from multiple ailments including PSP for about 3 1/2 years before moving him to assisted living last year. We lived about 40 miles from any services so help was almost nonexistent. I finally found help for about 20 hrs a week. By this time he wasn't able to accompany me to town anymore when I ran errands, etc. This usually took most of the day which was more than he could tolerate. About 1 1/2 yrs ago I fell and broke my upper back (T8) which made his care painful on top of being exhausting. I finally was able to find a little more help, but never more than 38 hrs in any week. Our drs were telling me I needed more help, but I couldn't find any more. I was able to do this until he was no longer able to use a bedside urinal at night without help because I was able to get a little sleep then.
When his care got to be round the clock, I started falling asleep while eating, driving or just about any time I sat down for a minute. I knew I was DONE when I calculated the number of hrs in a week (168). That was an eye opener for me and helped me realize why I was so tired. That was my tipping point! It took me 3 mos. after moving him to assisted living to get back to a normal sleep pattern. I was then finally able to get some of my life and health back.
I still have occasional bouts of guilt and occasionally think that I could bring him home again (I've recently sold our home and moved into town) where help is more readily available. Then I come to my senses when I realize that his care needs have increased a lot in the last year and a half, plus I'm older and there's no way I could do it again even if I wanted to. He and I are both better off where we are and happier. They provide him with wonderful care and are much better at it than I ever was. I just have to remind myself of that periodically.
I think you will know when you've reached your limit just like I did. I hope you don't wait until you've ruined your health like a lot of caregivers do. Remember, you have to take care of yourself too.
Hi Caroline ,it is a stressful job looking after your love one,it made easier for the caregivers who come morning and night to help with Kathy my wife , perhaps you should get more help and to ease the burden on you,i know that not getting enough sleep makes it a whole lot harder,all the best Peter
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