I feel like all I do is complain. - PSP Association

PSP Association

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I feel like all I do is complain.

penny1956 profile image
penny1956

Good morning, I have a question what would you do if?

While transferring your loved one back from the chair to the wheelchair he decided he was going to do it and I had to stop him. I tell him you can’t do it that way he had his hands on the wheelchair arms and was facing the wheelchair trying to get in it. When I tried to get him to turn around he got mad and while I’m trying to put him in his wheelchair he put his fist up to my face like he was going to hit me and I got upset with him. I dropped him back in the chair and told him that if he was going to be mean he could just wait for someone else to help him. Lol no one here but me to help him.

Thank for listening.

20 Replies

Hi Penny I hear you it’s heart breaking isn’t it I do know I have taken things so personal that my husband has said and done to me for so long I have decided to detach myself a bit from any feelings like that now I realise he’s not the man I married anymore and I am trying to make a life seperate from him now because I know when he is gone I have spent so many years invested in someone who doesn’t really feel the same and I do believe dementia can set in The only way I am finding I can deal with all this is to just think that he’s not really there anymore and just do the task in hand sorry if that sounds a bit harsh but mentally it’s too much to keep getting hurt

Take care my friend that’s just my version x

penny1956 profile image
penny1956 in reply to Dance1955

I feel like I’m getting to this point too. I called our youngest daughter when it happened and she was like Mom just walk away and take some deep breath’s and go back and help him. I really just wanted her to come and help him but that didn’t happen. Thanks for listening.

Dance1955 profile image
Dance1955 in reply to penny1956

I have done exactly the same and hoped for exactly the same Penny family don’t really get how hard it is so they ? People on here do and don’t feel guilty about being like me seriously I have had a lot of years of it and like everyone else given a up a lot but at the end of the day we are only human I am looking at nursing homes now and hope it will not be too long i am exhausted now mentally and physically

Look after yourself treat yourself and do what you need to do it’s probably only going to get harder xx

It’s so tough and frustrating when the person has lost a lot of their judgment and when they do nonsensical things, often repeatedly. Don’t let him hurt you. He’s probably not that quick so you can move away. You did the right thing letting you both take a moment to reset.

After one really tough transfer during which I almost dropped her, I told my mom, Oh my gosh! Mom, you know I love you but ... and then we laughed. And eventually I finished the sentence. Mom, you know I love you, but this is hard!

Hang in there. Line up all the help you can.

Hi Penny, that brings back memories for me. It is so hard and frustrating but you are doing your best. Just breathe and vent if you need to !

When your loved one is doing that, his brain is telling him he needs to be in the wheelchair but it no longer has the instruction manual on how to do it, and it is very frustrating for him too. If you can bite your tongue ,not easy, I know, the number of times towards the end with my hubby, I managed to stop myself from biting back, then the silent tears would just slide down my cheeks. Some times I would just say to him, let's just sit back in the chair and we'll try again later when we're both less tired.

It is really so "unfair" to have to go through that but just do what you can; "if" you can get any sort of help, then accept it. We had nurses who came in the mornings and evenings to wash and dress him but I live in france, so probably different. It gave us both somebody else to talk to and a little respite for me.

Sending you a big hug and lots of courage.

Dawn, xx

penny1956 profile image
penny1956 in reply to patch33

Thank you for your kind words .

That sounds stressful I would do some relaxation like deep breathing and listen to a guided relaxation. Take a long walk. Try and arrange a day to yourself.

Hi penny1956!

Remember that the main caregiver jobs and occupations grow along with age and the disease progression. Without significant help it is very difficult to carry out all these activities without suffering a severe wear-down.

Rest and sleep well is essential. Combat stress, too.

On the first years of the disease, the patient resists losing their autonomy trying movements and exercises that are increasingly difficult and logically increase the risk of falls and damage. The patient often discharges his/her frustration and complaints about the primary caregiver. It is a very hard and discouraging situation but it must be overcome. It is one more symptom. Also it is exhausting being on call 24 hours a day 7 days a week.

From our experience and also from my group of caregivers, it is essential to find efficient help that allows areas of freedom and leisure as well as vacation periods for the caregivers, far away from the PSP problems. At least ten days of holiday each six months are essential, supposed an effective and intense help with trained personnel throughout all the year.

As Bill F said: “As we look back on where we are, we have a wonderful support team of medical professionals, fitness trainers, church folks, nonprofit groups, friends/neighbors, paid caregivers, family members. It's absolutely amazing. Start now to build your team. You will need them, and they'll all want to help.”

As say JEN2017 “nobody could/should go through this hard disease alone. Especially the caregiver”.

Someone in the community of caregivers once wrote “it is not my job to care for my loved one; it is my job to find the best care for my loved one”.

There is always the possibility for the caregiver of losing patience, or not having enough hands for the task at hand. It is then when he attacks the feeling of guilt, unfairly. Be careful.

No one will understand you unless they have been through such an experience. There is always the feeling that you could do better and always keep your nerves under control. We are not perfect and whoever does everything he can is not obliged to do more.

Do not exert yourself. You risk serious injury. Preferably ask for help.

Hug and luck.

Luis

Luis, I have begged for help but just so expensive. I haven't had a day off in 3 years. I am exhausted and feel my health is now being affected.

Hi mjtogether!

Do not exert yourself. You risk serious injury.

“it is not your job to care for your loved one; your job is to find the best care for your loved one”.I have read your post. Perhaps is time to look for a nursing home.

Hug and luck.

Luis

I have looked and looked but nursing homes are so expensive. Financial help or assistance is non-existent. I am open to any suggestions or avenues for help.

Hi, don’t beat yourself up, I would have done exactly the same, with lots of unladylike words attached. We are all human with tempers that snap at times. I only ask one question, since when was it illegal to shout at your husband? I rest my case.!!!

Sending big hug and much love

Lots of love

Anne

Penny, I am so sorry, it is a part of the disease. It is very painful, and it probably will happen again. It is caused by frustration on his part, but no less hurtful to you. The PSP victim has lost every bit of control over his life and is angry. The only person he can take it out on is you, his caregiver and wife. I remember leaving the room in tears more than once. Just try to remember it is the disease not your husband.

It is a difficult and demanding situation that family members who visit now and then are unable to comprehend how draining the main carer giver's role can be. You need to access as much help as possible. Have you and your husband had recent assessment of both of your need. After many such assessments I now have 6 carers who help with my wife's care and wellbeing.

Without their support I would not be able to cope and look after my wife at home, as she is living with a severe form of FTD and PSP.Please ask for more help.

Hi Penny1956, I have exactly the same response from my wife who has PSP I have even been slapped, you are right to admonish but quickly forget. I think the brain activity of patients with PSP mislead them into thinking they can spin round the wrong way. My wife has now passed this point in the progression and now recognises her limitations. Best Wishes KBO

Just a thought Penny, have you got a Turn and Transfer device such as an Atlas Advance or a Sara Steady. WE have the former as the Sara was too large for our bungalow. This enables you to transfer the patient much more easily. Talk to your OT who may be able to supply one. I have found it invaluable for transfers and can save your back and maybe your sanity. Good Luck, we must all pull together .

There are days, more and more, I don't even feel like a wife but I have a job to care for a 70 yr old disabled man. My husband has called me names recently that he has never ever said in the 50 yrs we have been together.Some days it's like dealing with an 18 mos - 2 yr old. He definately needs constant cueing over and over for the same everyday tasks. The least little thing distracts him from the task in hand. It is definitely more and more frustrating.

The man I knew as my husband is more and more leaving me....so very sad to watch and be a part of the slow deterioration. I keep saying he is the one suffering more but we all suffer as the wife/care giver too.

I have been the sole caregiver for almost 3 yrs and I am tired and burned out. But I have to hang in there for him for as long as I can. More for financial reasons though next week I am going to a local nursing home and meet with the social worker to see if we qualify for Medicaid for inpatient housing. I think I have done everything i can for him and he needs nursing home care at this point.

My heart goes out to you it really does . I’m the one with CBD and thankfully still able to do most things myself although putting on a jumper can lead me to tears on a bad day . I have a great family but I want to go into a home when my time comes . My family all say no but they have no idea what’s ahead of them ... I’ve talked many times on this site about my mum who I cared for for 19 years . She has dreadful mental Heath issues that no one would actually believe it until they seen it and even then they would say “God love her “ ..God love me I wanted to scream . She’s now in a care home as she has osteoporosis and her spine crumpled so I couldn’t manage anymore . I think God seen this and took the decision out of my hands as social services stepped in . I got my mum back as my mum . I hate that she’s in a home but I can now have time with my family which is precious to me now because I don’t know how I’ll be in 6 month or 6 years .. my poor sons think I’ll beat this .. What I’m saying to you is do what is right for you . You can’t care for your husband if you become ill with stress .. i hope you make a decision soon and you both start to enjoy the time you have left together xx hugs from Belfast

Thank you I just took him to the bathroom and he pees on the floor because he won’t stand up straight. He puts both feet on the toilet seat while setting in the wheelchair and won’t put them down or let go of the bars. I had to call my daughter to get her to help me . Thank god she answered the phone.

Martina_MP profile image
Martina_MP in reply to penny1956

Dear Penny, It sounds like you have reached your limit and are feeling very burned out. When I reached that point, I felt very desperate and exhausted, and any little thing was overwhelming. (And toileting issues can really drive me nuts.) You may find that it’s hard to recover your energy even after several weeks. It’s time to rethink your arrangements so you can survive this yourself.

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