Overwhelmed in Kentucky…. : Hi to all! My... - PSP Association

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Overwhelmed in Kentucky….

Laurel1995 profile image
42 Replies

Hi to all! My husbands health is going downhill rapidly. I don’t know how to cope with this all. I feel overwhelmed. The falls, the choking,….. and now his nose and eyes run continuously. I try to keep drops in eyes. When we go anywhere now he has to be in a wheelchair. If not for the rollator he could not get around in the house at all. He does pretty well mentally… but can’t remember things he use to do around the house and such. His eyesight is worsening… mainly sits in recliner all day with eyes closed. This disease is so horrible! I just can’t understand how and why people get this ! It’s like you no longer have a life. I just can’t explain in depth how I feel, and how it hurts me to see my Sweetheart of 48 years in this shape. I stay so exhausted that I don’t know if I’m coming or going at times. I just need strength to carry on. Mentally and physically…. I’m sure many know where I’m coming from. Plz respond with how you cope with this!

42 Replies
AliBee1 profile image
AliBee1

Dear Laurel,I am so sorry to hear your sad post. It is a horrible disease and I agree that no one should have to suffer from this.

Most of us have been where you are today so can appreciate how you are feeling. It is so good that you have this forum to say how you are truly feeling as it is a safety valve which is so urgently needed.

There is no real solution, but it is essential that you acknowledge how you are feeling and try and prioritise this by getting help in to give you a break. I know that this is easier said than done but it really is so very important, as you will not be able to care for your sweetheart if you go under. I don't know if you have family or not but if you have then try and arrange for them to come and stay and give you a break away. If not then you may need to pay for someone to come in and sit with him or take him out or for him to go for day respite on a regular basis. It does seem awfully cruel to do these things and you will feel guilty but it is truly essential and will help you cope and it may help him too to have other company, especially male company. Also let your doctor know how you are feeling.

I am sorry that I cannot give a more helpful answer but please take this on board.

I was told the other day by a carer that 'I am no longer the main character in my own life story'. I thought that that just about put it in a nutshell.

Big hugs AliBee xx

Laurel1995 profile image
Laurel1995 in reply to AliBee1

Thank you for your wonderful advise! I need to talk to our Dr. And see what we can do about getting some kind of help. There is just no one around us to help. We have lost so many family members this past year. And those we have all have jobs and families to care for. Just frustration, trying to cope with all the things I have to keep up with! All his house chores outside and my own on the inside, taking care of him and his needs , just everyday life but now the work of 2 on one person. It’s HARD…. 😩🙏🏻

Cinderella80 profile image
Cinderella80

hi Laurel I'm so sad to hear this. Believe me we know how you feel. You are stronger than you know and what you are doing is extremely exhausting mentally and physically. I feel exactly the same as you I'm alone also . This disease is very cruel. But you have to keep strong don't give up remember the times you were at your happiest together. Just remember you are amazing and are doing a wonderful job. I know it's easier said than done but try to stay positive. We are here for you on this forum. I'm sorry I can't be more help. Lots of love and hugs to you.

Laurel1995 profile image
Laurel1995 in reply to Cinderella80

Thank you for your response. I am doing my best, but I am tired and I do need help. I need alone time without worrying, and rushing home. Time to be me. I know this won’t be forever but I don’t want to think of that. I don’t want to lose him, but I don’t want him to suffer with this horrible disease. He is so miserable in this body that he has no control over. Bless his heart, it breaks my heart seeing this daily continue to get worse in different areas of his being. 😭😭💔

Kayelless profile image
Kayelless

Hi from Tallahassee! You’re so right-on about your frustration. Thank you for saying what so many here feel.

Laurel1995 profile image
Laurel1995 in reply to Kayelless

Thank you for responding. It is frustrating and you don’t want to complain. I know it’s worse for him, he is the one going thru this, but I have to take care of 2 adults now. And that is very overwhelming!

Nanny857 profile image
Nanny857

Hi Laurel, I know how you are feeling, it was the same for me. I agree with AliBee, you should speak to your doctor and tell him how this is affecting your health, you need to take care of yourself so you can look after your husband.

Are you able to get some respite or day care for your husband or someone to sit with him once a week while you go for a walk, meet someone for a coffee/chat or lunch. Having some ‘me’ time can make such a difference. Could any family member help with outside chores in the evenings or weekends?

You are right, this is a horrendous illness and it is heartbreaking to see our loved ones suffer in such a way, so I do hope you get the help you need to continue to care for your sweetheart. Let us know how you get on.

Lots of love Nanny857xx

Laurel1995 profile image
Laurel1995 in reply to Nanny857

Ty Nanny 857 for response. It’s just so hard to get any me time. But I have to try somehow. Prayer for you!

Nanny857 profile image
Nanny857 in reply to Laurel1995

Thanks Laurel, our journey with PSP ended just over 2 yrs ago but I still pop in here now and again. 🙏 for you. xx

Laurel1995 profile image
Laurel1995 in reply to Nanny857

I’m so thankful you do! Experience can give the best advice! I hope you are doing ok. ♥️

Inparadise profile image
Inparadise

Every day is a new day. Try and take time for yourself each and every day, even if for only 15-30 minutes. Sending prayers and hugs.

Laurel1995 profile image
Laurel1995 in reply to Inparadise

Hi Inparadise! I try to find me time. It’s hard tho. He knows if I move. He wants me close all the time. Maybe security for him. Sending hugs and prayers to you also.

doglington profile image
doglington

Oh Laurel this reminded me of how I felt. My husband died 4 years ago but I remember so clearly the pain, exhaustion and overwhelming responsibility. I found our hospice took Chris for 4 hours once and then twice a week. It was a life saver. I also paid for a helper who could be trusted for another weekly break. You really must have breaks. I was able to nurse my husband at home with this and friends. Plus this wonderful supportive website !!! Big hug from Jean xx

Laurel1995 profile image
Laurel1995 in reply to doglington

Ty Jean! So sorry for your loss. Although I think it would be freedom for your husband. It’s like they are imprisoned in there own bodies. I have,HAVE, to check into getting help. For a break. Sending love your way.. ❤️

doglington profile image
doglington in reply to Laurel1995

I'm in England. Here the hospice offers support for those in the same position you are in. They were so loving and caring and he was happy I was having a break.It's so important to tell him how loved he is. I find it a comfort now.

I certainly lost my temper but always said to him that I was angry with PSP not him. We both knew his behaviour was alien to the real him. xxx

Nanny857 profile image
Nanny857 in reply to doglington

Hi Jean, lovely to see you’re still posting. I too lost my temper on occasions and then felt really guilty, but said it was the PSP I was angry at. I just pray all who are on this horrible journey find his forum a great help and comfort as I did, and for the friends made. Hope you are doing well.

Marion xx

AJK2001 profile image
AJK2001

Agree absolutely withAlibee, you need to take care of yourself, so you can take care of your husband.Have you tried a carers support group? I went to one for carers of adults and though no-one had PSP they faced similar challenges and understood.

Has your husband had his swallow assessed recently? He may need to thicken his drinks (differently), avoid certain foods, etc which they can advise on.

Also try to get to see an opthalmologist. Mum had constant runny eyes and the GP kept saying use the eye drops more often. We eventually got to see a cornea specialist who said the tear film was disrupted. She gave a course of treatment and reduced the eyedrops considerably. It didn't stop runny eyes but it made a huge difference for the better.

Is your husband closing his eyes because of light sensitivity? This often happens. Mum used to wear dark glasses all the time, indoors and out. She found an amber or green filter most comfortable. The RNIB in the UK is a useful place to look for information but I'm sure you must have similar over the pond.

Be kind to yourself, you are doing a great job looking after your husband. xxx

Laurel1995 profile image
Laurel1995 in reply to AJK2001

Hello AJK2001! Thank you for advise and encouraging words. He did have a throat evaluation a couple months ago. They said he did great. But not the same at home. I constantly remind him to take his time while eating and drinking. I keep our curtains closed. Because light does hurt his eyes. But he still sets with eyes closed. Take care!

Indiana-Girl profile image
Indiana-Girl

Good morning, Laurel!I, too, am experiencing what you describe. The constant runny eyes and nose. The difficulty seeing. My husband can no longer use a rollator or walker. He is confined to a wheelchair or his life chair or bed. I use an assist to stand to get him from point a to point b. He can no longer read but he does enjoy watching his favorite news channel as well as all of his shows. The most difficult thing I have ever done in my life is watch my beloved go from a strong, loving and caring man to this. But, nonetheless, I cherish every moment. At least he has no pain. I live in central Indiana and we have what is called the Central Indiana Coalition on Aging. Also referred to as CICOA. I would strongly encourage you to contact whatever agency you have in Kentucky that is of the same vein. They have been a godsend for me. There are resources available of which you may be unaware. You definitely need help and that need will only grow. I don’t know what I would do without my caregivers. No matter what, though, love your husband well. I know there are times you want to scream and yell. Go outside and so it. I am sometimes at my wits end but my Lord sustains me and gives me strength when I most need it. I pray you can find the help you need and the strength to endure and the patience to succeed. God be with you and your beloved. This is an insidious disease and no one should have to go through it. But we are and somehow I believe it is for a reason. I know my Sweet Husband has impacted others through his amazing and kind acceptance of this disease and hopefully I am doing the same through my care and love for him. The same is true for you. You are someone’s light and inspiration. Let it shine for him and others.

Laurel1995 profile image
Laurel1995 in reply to Indiana-Girl

Thank you for such a sweet and kind response. And truly I am finding myself losing my temper with my husband , and I feel horrible. My husband and I have been Christians our whole married life, he was in music ministry and traveled all over in a Gospel group . Now he can’t even play music or carry a tune. It’s so sad. He hasn’t driven a car in 4 years now. I pray everyday for strength to be able to care for him. I pray daily for patience, kindness and an understanding heart. This is like living a nightmare that you can’t awaken from. But I have to think, also ,everything is for a reason,and season. But I just don’t want it! 😭💔

Indiana-Girl profile image
Indiana-Girl in reply to Laurel1995

Feel free private message me any time. I would love to talk to you.

Laurel1995 profile image
Laurel1995 in reply to Indiana-Girl

Where can you private message at?

Indiana-Girl profile image
Indiana-Girl in reply to Laurel1995

At the top of the page is a bubble that says chat. My info is already there.

Ginger3Gi profile image
Ginger3Gi

Hi Laurel, so sorry to hear that you are coping with this on your own. My husband's health is also declining and everyday tasks for both of us are, at times, overwhelming. I agree with other posts, get some help, even if it is paid. I eventually got my husband a day centre placement for 2 days a week, it allows me time to catch up on chores, which like yourself, have fallen to me. I am not sure whether on not you receive any kind of disability benefits for your husband, I use my husband's to pay for his day centre. My husband hates it, but it gives me valuable time to be myself, it is such an isolating experience PSP, thankfully my husband has had no damaging falls, but does choke on liquids at times. My husband is 80 and has had PSP since about 2016. He is reasonably OK, but I do spend much of my time sitting with him for company as he often feels isolated. His speech is very bad now, but he does access a neuro gym to help a bit with his mobility. I feel just about able to cope even with some help, it must be so very difficult if you have to do all yourself. Please do try and ask for help, because as has been said to me many times, if you cannot manage and go under, who cares for your loved one? We also have an adult son with Down's Syndrome who is still at home, so I am a double carer. Take care and please do ask for help, perhaps your Dr or Neurologist can point you in the right direction, I hope they can, you cannot do everything by yourself. Take care.

Stephanielayell82 profile image
Stephanielayell82

As everyone else mentions to try to get help. Maybe a teenager or young college student to help with outside chores and maybe a cleaner for your home as needed. Not sure if he is under hospice care but he certainly qualified for it. They have been a God send here in NC to help. I remember having the feeling I don't want to lose my loved one either then when things are as bad as they are now I pray God takes her soon. She has no quality of life or dignity left. It's been the hardiest thing just watching her melt away a day at a time. Stay strong and sending prayers to you and your husband.

Laurel1995 profile image
Laurel1995 in reply to Stephanielayell82

Thank you Stephanie! Bless your heart. I have thought about hospice but I’m not sure if he’s ready for that. I am gonna talk to the Dr to see what options we have that are out there. Sending you love and hugs for strength and rest.

Stephanielayell82 profile image
Stephanielayell82 in reply to Laurel1995

Same to you. Most people think hospice is only when you towards end of life but it truly isn't. They assist with nurse check in weekly, bathing and dressing, music therpy which helps with vocal cord stretching. My loved one was hesitant to get hospice involved thinking it was going to kill her we have had them for almost 2 years. And some have CNA that can assist you as well and insurance pays for it rather then out of pocket expenses to you. Best wishes!!

Laurel1995 profile image
Laurel1995 in reply to Stephanielayell82

Thank You!♥️

Dickwin profile image
Dickwin in reply to Stephanielayell82

I am so glad you were able to get Hospice care. I need a Doctor to request it, and so far, 2 GPs and our neurologist have shut me down, saying that my wife needs to be 6 months away from passing before they will even consider it. The poor woman has been bed ridden for 2 years now, is incontinent, has lost most of her sight, can no longer speak, and falls 3 to 5 times a week, and she doesn't walk at all...the falls happen during transfers. I retired early last June to take care of her full-time. I get almost no help from my insurance, and did not have long-term care for her. That's healthcare in America.

Stephanielayell82 profile image
Stephanielayell82 in reply to Dickwin

That is horrible to hear. That's not true at all about being 6 months out from death. Maybe you can contact hospice in your area and they can advise your doctor's. They may only be fighting it because it won't be lining their pockets but your wife and yourself shouldn't have to pay the price for that. Yout wife has a incurable disease which is why she would qualify for hospice care. Best wishes to you and your wife.

LFG3 profile image
LFG3

Oh Laurel1995, my heart goes out to you, as I am in the exact same situation. We moved to TN during the pandemic two years ago and I have no friends or family here to help me. I live in a condo complex, which seems to be a retirement community because all my neighbors are in their 80s. I love them all, but because of their age and own health problems, they are unable to help. My husband is in year 5 of PSP. Wheelchair if he goes out to Dr appts and rarely to a store with me. Uses a walker at home with me hanging on to him, but he is so unsteady I can see that ending soon. I often use a medical transport chair, waterproof kind that is sometimes called a shower chair, to wheel him from bed to chair to bathroom or kitchen table. His eyes are fixed and often run. Nose runs when eating but he uses a spray called Ipratropion Bromide to help with that. Our current problem is urinary frequency. He has to pee about 12-14x a day. All through the night too, so getting up with him several times a night is so exhausting for me. We tried an indwelling catheter but after only two weeks it started cutting through his penis. Waiting for that to heal up before Urologist tries a smaller catheter with a leg lock. I shave and bathe him every other day. He can't stand up, get out or in bed himself, or dress himself. So very sad to see my once strong, healthy husband be reduced to this. He is losing his voice and chokes often. Hired in help is too expensive to afford. I'm going to call hospice as soon as I can't do this alone anymore. They will come in and do the bathing at least. Our complex does the outside yard work, but that's what I'd hire out first if I were you. I can still manage the condo cleaning, laundry, meals etc since our place is small, but that alone with caring for him is absolutely all I can do. I'm completely exhausted and spend as much time as I can reclining with ear plugs in and eyes closed resting, while he watches TV. Then I'm getting some rest but right by him if he needs something or has to have help going to the bathroom.

You are not alone in this. I'm just south of you and am exactly in the same boat. Please stay strong. We can do this together and see this through. I'm sure they would have taken care of us, if the situation was reversed.

I'm sending strength and love your way. Focus on just today.

Laurel1995 profile image
Laurel1995 in reply to LFG3

Thank you LFG3 for responding, sounds like we are in the same situation. This is the most horrid thing I’ve ever been thru. My husband hardly goes to bathroom. That could change at any point I know. So you probably are in worse condition than me. And, yes, I know my husband would do it for me. He was the best, I miss him so much! Just that hand of strength laying on mine, knowing I was safe and secure.

I am sending strength and love your way . Trying to take one day at a time. ❤️

Rose1sunflower profile image
Rose1sunflower

I feel for you and can also appreciate how you are feeling as it is such a similar story to my own. I sometimes feel guilty about saying how I feel when he is going through so much. How somebody mentioned in one of the replies, I am not the main character in my own life. I don’t recognise myself now! There so many more chores now and the decisions I have to make now, so yes I do appreciate how you are feeling. It is time I think for me to get some paid carers in. I like a quote from Eleanor Roosevelt. A woman is like a teabag , you don’t know how strong she is until you put her in hot water! Or something like that! Good luck, take each day as it comes is all I can say and take help when it’s offered. I’m still trying to learn this!

Laurel1995 profile image
Laurel1995 in reply to Rose1sunflower

Yes! Rose! We have to stay strong and take help when it’s offered. It is so hard,tho, when you are use to taking care of everything on your own. But it’s different now. I also don’t recognize myself at times. I’ve lost me. I’m just overwhelmed! I have to remember 1 day at a time! Stay strong and We can do this! By the Grace and help of God! 🙏🏻🙌🏻♥️

Purrlie profile image
Purrlie

Hello Laurel1995,

All of us here know and understand what you and your husband are going through. Everyone encouraging you to seek help is so right, but I also remember that when you are plugged into that grinding and exhausting daily (and nightly) caregiving on your own, it seems almost impossible to even find the energy to think through what you may need to do to find the help you and your husband need. I am glad to read that you are going to call the doctor to talk specifically about the help you both need.

A big hug,

Purrlie

Laurel1995 profile image
Laurel1995 in reply to Purrlie

Thank You! And you are correct, sometimes I can’t think at all. I just sit blank at times, like I don’t want to think of anything else . I think mental overload. Plus the physical. Every morning I awake ,I already feel drained before my feet hit the floor . Just the dread of another day. I feel very depressed. I don’t even want to get up.

Dickwin profile image
Dickwin

Laurel,

I am going through the same issues with my wife that you are experiencing with your husband, so I understand your situation. My wife has been dealing with this damned disease for almost 10 years now, and we are both exhausted most of the time. She was originally diagnosed with Parkinson's, and then "upgraded" to PSP 5 years ago. My wife can no longer walk at all. She just transfers from wheel chair to toilet and to lift chair. She is quite close to blind and is so unsteady I have to be ready for a fall at every moment. She will stay in her chair most of the time, so when I believe she is going to nap a long time, I get up and go for a walk for 60 to 90 minutes. She knows to call me if she needs anything, and I am never more than 5 minutes away. It is the only time I have to myself, and she rarely wakes up on me. It is the only thing (along with prayers) keeping me sane, as she really insists that I be present with her all of the time.

This is going to be a long, arduous battle for both of you. We have to take it one day at a time. I cling to the notion that God will not give me more than I can handle on any given day. So far, so good. But I also rely on this board. I would be lost without the guidance I get from this "panel of experts".

BTW, I am in Illinois, in the Chicago area. There are not many resources that I have found. In the U.S., Healthcare and insurance only seems to treat folks with immediate concerns.

Someone please prove me wrong;)

Warm regards,

Dick

Laurel1995 profile image
Laurel1995 in reply to Dickwin

So sorry that we are in the same situation. Dealing with this disease is horrible! I am glad there is a site that you can talk to people that are facing the same challenges. I know that I am going to have to have help. I believe your wife must be in worse shape, since my husband can still go on his rollator, slowly but he can go a little. But always endanger of falling. He hates this so much. It kills me seeing how he has had everything taken away. What quality is life sitting in your recliner all day. He hates it!! He never sit down before. Always outside doing something. This is such a despisable disease! Take care .

racewalk profile image
racewalk

Going to church. Try also some mindfulness excercises, there are books for that. Keep high!

Este profile image
Este

Check into hospice care. It is not just "end of life" care. My mom was on board with hospice for two years before she passed. It might just be one or two days a week for a few hours at first but as your loved one's needs grow so will their level of involvement. They can help with showering, feeding, dressing, etc. as well as offering emotional support for yourself. They made a high difference for us. When they are present, use that time for yourself. Take care of yourself and keep hanging on to those fond memories of the man inside of this horrible diagnosis.

Martina_MP profile image
Martina_MP

Hi Laurel, Check here: chfs.ky.gov/agencies/dail/P... and here: chfs.ky.gov/agencies/dail/P... Call up your local county area agency on aging and keep trying until you find out what you are eligible for. See if they can help you get benefits for your husband to pay for a hired caregiver and let you know the different local options (such as day programs etc), and support groups. Though here in the US, a lot of people have to use their savings for private caregivers, unless they are eligible for Medicaid. A lot of caregivers are very experienced and will teach you ways to make life easier for you and your husband. Even a few hours a few days a week would make a big difference in giving you a break. Your doctor may also be able to prescribe some home care services for your husband for at least a couple of months which could include nurse visits, physical and occupational therapists, and an occasional home aide.

Laurel1995 profile image
Laurel1995 in reply to Martina_MP

Thank you! ☺️

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