Probably the hardest thing for me as a caregiver is the sudden weekly and sometimes daily changes.
A year ago I truly though, okay I can deal with this, if this is what he is like now it’s going to be okay, thankfully he is kind and sweet but gets around okay. We even were going out to dinner fairly frequently, he was able to drive the golf cart around the Ranch, he dressed himself for the most part and for sure showered and shaved himself. He was eating VERY well and enjoying quite a few things.....
Now I have to completely dress him, shower and shave him....he doesn’t have the appetite he used to, sleeps in his recliner most of the day. He has absolutely zero conversation. The thing that is scary for me is that almost daily a new problem crops up. As soon as I adjust to one of the things that happen I get another challenge....I really don’t want to loose my health in the process of this cruel disease....
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JubileeRanch
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Do you have any outside help coming in? If not it may be time to do so. Caregiver burn out is real problem and all involved suffer the repercussions, caregivers and cared for alike.
The decline in abilities is expected, how fast and which abilities is the million dollar question.
Do you have any facilities nearby that may offer a week of respite care?
Yes, there are several places I could choose from and Hospice will pay for 5 days every 90 days so that will help.
I live on a Ranch, my neighbor behind me is a good friend, her father is in a facility and she is alone so about 4 days a week she comes down here and has a glass of wine and we watch something on TV, it’s a needed break for me....
I am so very sad, I can not begin to say what I feel for the time we will not have together....
Our grandsons are the absolute light of my life.....
Unfortunately PSP is a mysterious disease and it is impossible to guess what today or tomorrow will bring. Searching this site can give you many ideas how others have handled different situations. Are your sons close enough to help with their dad? Hopefully there is a nice nursing home nearby... for when he may become too much for you as his career. I remember from past photos that he is a lot taller than you which l am sure makes caring for him harder. Many caring folks have been injured taking care of their loved ones. Please take care of yourself as well as your husband. Sending hugs... Granni B
Our youngest son is in Houston, but he visits fairly often our other son is in Boerne which is only about 15 minutes away....
There are several nursing homes around our area, I have visited 4. Yes Bob is 6’4” and I am 5’3” so it is quite a difference.
I am sure I will have to take a respite soon, I have him signed up with Hospice, they are very nice. Also I have arranged to have someone come Tuesday and Thursday for as long as I need to do things I otherwise would not be able to do, such as lunch with a friend etc....
A friend of ours whose wife passed away from a long bout with cancer about 10 years ago called today to check on me and said something really true.....I was telling him how many people try to tell me how to handle things how to arrange your furniture, how to help him up, what to feed him etc etc etc...Our friend said “people that have never been through such a thing should only ask “what can I do for YOU to make your life easier?”
People on this site and others who have been in a caregiver role are the only ones who really know....
What your friend said is soooo true. I think l love him. This is a hard battle & we all need more friends like him. A good friend with compassion & understanding are worth a million dollors or more. I am glad you have toured some nursing homes and that you have the support of your sons. Sending hugs of strength & endurance... Granni B
Like you, I was good with the early care and even with the dressing, feeding, showering and shaving when it came to that with a little outside help (16 to 38 hrs/wk) . Then came the 24 hour care, up several times a night, etc. One night when I couldn't get back to sleep, I figured out how many hrs there are in a week (168). That was when I knew I was in trouble. That simple calculation put things in perspective for me.
Because of the remote area where we lived, I was never able to find more help. Eventually, I had to throw in the towel and find a care home for my husband partly to preserve my own health. Even with hospice helping with some of the bathing and shaving, I just couldn't do it any more. I hope if you reach that point, as I did, that you won't feel like you failed. You are the only one who really knows what you are dealing with because every PSP patient follows his/her own path.
Take advantage of any respite that is offered. I think it would have helped me, but it wasn't available for us because of the shortage of nursing homes and other care facilities in our area. We had to wait almost three months for an opening in the care home we chose. Because of hospice help for any medical issues, I was able to find assisted living for my husband. It was much cheaper than a nursing home and offered more personal care. He was there for almost two years, got great care and they became like family. I was able to go back to being his wife and get some of my life back.
I hope this is helpful for you. Your friend is right. The only ones who can really understand what you are dealing with are the ones who have dealt with similar issues. That is what makes this community so helpful. Even so, your situation is unique in it's own way and you are the only one who truly knows what you are dealing with. I hope you will find what works for you and your husband.
Pat
I ran myself into the ground and was diagnosed with pneumonia a week after Larry died. I am still on the mend three months later.
Get him started in palliative care if not home hospice. In hospice care you are qualified for a five day respite every 90 days.
I have now reached the stage where I feel I can no longer go on being full time carer and we are just about to have two weeks in respite with maybe a view to long term care.I can't believe this is happening after so long looking after Duncan but I have crashed emotionally .Like you said I feel I am losing my mental and physical health and have maybe been too stubborn in keeping going.I love him so much .
A brave decision. Only those who have done it know the emotional and physical price paid by both with PSP. You must look after yourself in order to be there for Duncan in the future. Love from Jean x xx
Yes painfull to read, but that's the story of our (PSP) life. As a caregiver you have to adjust all the time. It made me feel so frustrated and it takes so much energy. I often felt I was loosing my health, but I kept on going because of him. There will be a moment you have to admit to yourself you can't do it anymore. It's so sad. Take all the help you can get and love him by holding him.
The last three months my husband was alive he went to a nursing home. By then he was completely bed ridden, needed diapers and hand fed. It was hard and I did feel horribly guilty but I knew it was best. I could then go back to work full time and catch back up on mortgage and other bills. And most of all...take better care of myself! Good luck and take care!
My husband is still able to do many of the things you mentioned, feeding ,dressing, socializing a little with friends who know us well. However I can see changes coming, his progression has been slow for 5 years. I fear the time ahead. I frequently use the saying to people who mean well, but its hard for others to grasp, "unless it your reality"!! There are many hard situations in life, but unless you are actually living and dealing with the challenges and emotional and physical impact-its not "reality". I am grateful for the compassion and support of all here as well as our friends and family , it is our "reality" .
Your doing all you can-no guilt, no regrets. Hugs! Pat K
I’m just about where you are in this devastating journey ... I’m 83 and have been my husbands only caregiver for the past several years because he was misdiagnosed until this past October....he has been independent managing all of his personal care, walking with his ustep walker .....last Tuesday we were out for lunch and shopping.....then all went downhill....he fell during the night....from then on he was hospitalized for six day...now he can’t walk, is incontinent, can’t do any of his personal care or dress himself and has periods of complete Dementia, rambling and not understanding anything ...a complete negative reversal of his ability...he is now in rehab....this is a much needed respite for me but the road ahead will be very difficult ...this disease is cruel and no one knows just how devastating it is unless you are living it as we are !!!!
Sending you hugs and my wishes to care for you, too....lKathy
Bob had a very nasty fall in Sept., ended up with 17 stitches on his face and a long drawn out time the emergency room. He definitely went down after that.
I use a “Tens Machine” on my back that often aches, Chiropractors use them only theirs are much bigger. I decided since it sends electric stimulation to the muscles and nerves perhaps I should try putting it on Bob’s forehead in the place where he has damaged nerves or a build up of Tau....I did it twice for one hour each time the day before yesterday and yesterday....this morning one of his eyes looked bright and normal!!!
I know it sounds crazy but hey I will try anything!!! Also he tends to look to the left as he is walking which makes him run into things....I bought an eyepatch and put it on his left eye so he HAS to look straight ahead! That also showed promise!!! Our brains can be retrained I do know that, so that is what I am trying!! Particularly since EVERY Dr. sympathetically just basically says “good luck, nothing we can do”
You are preaching to the choir. That's exactly what we are going through with my Bob. How utterly exhausting it is. I just got someone in for showers. Bob has a unhappy habit of falling backward in the shower. I couldn't get him out or up and called my son-in-law (kids live with us for help) to help. Just imagine a greased pig with him all soapy. That's when I decided that I really can't do that any more. Baby steps I forsee will start being larger steps to come.
We as caregivers sure do struggle and stress, don’t we? I know that a time will come when Palliative care will be needed and eventually hospice. My husband has told me repeatedly that he NEVER wants to go to a nursing home! Should he go down the path of soiling himself he wants to end his life. I guess this is when hospice will help and take over his wishes 🤷♀️ This is why I can’t deal with the future. I can only take baby steps and do one day at a time. Sometimes I’m thankful for the slowness in his progression but other times I want it to be over. I suppose this is normal, whatever normal is for this horrible disease.
Last week we discovered that my husband has some pinched nerves in his lower spine at L4/L5 and this is what could be causing his back to spasm, bringing him to his knees. We have some choices to make regarding treatment but I am doing a bunch of research and homework before I adjust his medical cocktail. We’re going to increase physical therapy and we’re in line to see a pain management specialist a month from now. I’m exhausted, I suppose that is an understatement.
I remember thinking a year ago.....”if it doesn’t get worse than this I am okay with it....He was still showering himself, shaving himself and dressing.....also he was not having any bathroom accidents.
Now my day starts by waking him, then going to feed the 3 dogs, 5 cats and 10 chickens 🤪
I come in and get him a cup of coffee take it to our room where I put on my makeup (in my closet) he sits and waits for me to shower and dress him, which is a challenge because he often tries to put both legs in one hole, same with the arms. Almost every bowl movement he has some sort of accident and he no longer wipes himself 🤦🏼♀️.....
He is signed up with Hospice, they have been really nice and will pay for a 5 day respite for me at the facility of my choice....I did not want to do it but I am going to have to....last week was a brutal week, I am a walking zombie....I am very fortunate to have to have some help, but nothing take my place as far as the feeding and cleaning him up and dressing him.
I give him so many good supplements that he looks great!!! Better than I look, I have aged a lot since this began....
Take it a day at a time and take advantage of any help you can get.
I totally understand! I’m installing a bidet gadget to our existing toilet to help with cleaning him up. It does seem to be a gradual decline which probably helps us get through the next phase. Sometimes I’m not even aware that I’m dressing him, it just kind of happens naturally.
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