Feeling emotional

[Maxine12]

Hi everyone, I find myself turning back to this site,. I'm scared about even looking on here because for me it's facing facts, and that I am finding really hard! With my mam only being diagnosed a couple of month ago I know we are nearly 3 years in with her having psp... I see her deteriorating slowly but it's so hard just knowing it IS happening. My family seem to be dealing with it ok, but for me being here living with it 24/7 As I'm always with her, I know things aren't going to get any better, if not worse... At the moment I find myself just sat thinking WHY, why my mam at 60 years old who has had a shit life brining 5 kids up on her own and my youngest brother who is 19 and just gone off to uni, this should be her time now. I can see she is scared and I don't know what to say to her, I do let her know we love her and comfort her.. I take her out whenever I can, 3/4 times a week even if it's just for a walk round the super market, the future is so scary... I know people will say take one day at a time, and believe me I try, but it's there isn't it, the unknown, the thought of knowing what is to come... I also have a partner and son who is 10years old, and I don't want this affecting them but it is. Life is so cruel... Sorry for rabbiting on xxxxxxxx

[laroux]

Hi Maxine,

It's almost impossible to not let this disease effect the people around it. my husband was diagnosed in 2012, he was 56. It's very hard to get to a place of acceptance, but it is what it is. You are probably still in some initial stage somewhere between questioning and misbelief...I remember being there. I tried to find as much information as I could about PSP and kept my husband as knowledgable as I could. He seemed to be more accepting than me. I'd like to tell you it gets easier, but it really doesn't. I did have to learn to accept the fact when I was no longer able to care for him at home. I really felt defeated, and was riddled with guilt, but I work full time and couldn't keep him safe when I was gone. His needs progressed, and I wasn't able to provide the attentiveness and care he required. He has been in a care facility since February, and he is very well cared for, and I've regained some sanity You are right though, it is not fair, but rather than worrying about what's to come, try to plan for her future, of course you cannot know what will happen when, or in what order, but get as much info as you can so you can put whatever supports in place as your mam needs.

Be strong!!

Joan

[NannaB]

You rabbit as much as you need to Maxine. It is hard seeing our loved ones suffering with this horrible illness but you are doing all you can, loving her, caring for her, taking her out etc. You are also correct in thinking folk will say take one day at a time. Start thinking now about getting help in, even if you don't think you need it yet and do get time for yourself and your family. You will want your son to remember good times with his grandma, not just a time when she was sick. Try and encourage your mum to do things she has always wanted to while she still can and build as many happy memories as possible. My husband and I always have a laugh together every day. Sometimes during the day I wonder if we will make it through but we always manage to laugh at the disasters in the end. If I can't find anything in our own lives to laugh about any day, I will find something on Utube to show him. I used to be a terrible worrier but over the years realised that worrying doesn't change anything. It results in sleepless nights which makes me tired and irritable and unable to cope. So now if I can do something to help a situation I will but if there is something I have absolutely no control over I pray for peace, an answer to the problem and a good night's sleep. At first I found it difficult to ask for outside help and thought it my job to be the sole carer for my husband but then realised that the answer to various problems came from outside agencies. The help and support is there (in the uk anyway) so don't be afraid to ask for help.

It is good you are there for your mum and I am sure she appreciates all you are doing for her but don't burn yourself out.

Take care of yourself as well.

Best wishes

Nanna B

[NannaB]

You rabbit as much as you need to Maxine. It is hard seeing our loved ones suffering with this horrible illness but you are doing all you can, loving her, caring for her, taking her out etc. You are also correct in thinking folk will say take one day at a time. Start thinking now about getting help in, even if you don't think you need it yet and do get time for yourself and your family. You will want your son to remember good times with his grandma, not just a time when she was sick. Try and encourage your mum to do things she has always wanted to while she still can and build as many happy memories as possible. My husband and I always have a laugh together every day. Sometimes during the day I wonder if we will make it through but we always manage to laugh at the disasters in the end. If I can't find anything in our own lives to laugh about any day, I will find something on Utube to show him. I used to be a terrible worrier but over the years realised that worrying doesn't change anything. It results in sleepless nights which makes me tired and irritable and unable to cope. So now if I can do something to help a situation I will but if there is something I have absolutely no control over I pray for peace, an answer to the problem and a good night's sleep. At first I found it difficult to ask for outside help and thought it my job to be the sole carer for my husband but then realised that the answer to various problems came from outside agencies. The help and support is there (in the uk anyway) so don't be afraid to ask for help.

It is good you are there for your mum and I am sure she appreciates all you are doing for her but don't burn yourself out.

Take care of yourself as well.

Best wishes

Nanna B

[YipYapStaam]

Hi,

Life is cruel but pls don't dwell on it!

My mum has just died at 59 and even now I am happy with the fact she had a good life. Of course it wasn't easy but she has always fought through and smiled.

Continue to take her out bit when she deteriorates, try and find a solution or if she's sad, surround her with love.

What's most important is to accept what it is and enjoy every day! If your mum is down then do something that makes her happy (our solution was to take the p**** out of my mum and she would say something back). It is really important that she does not feel like a burden and that you take great pride in looking after her.

Life can deal bad hands sometimes but the way you and your family react can create a lifetime of happiness and memories.

[jillannf6]

hi maxine

i have PSP and do not want to dwell on what it will eb like in the end = needless to say i was dxd dec 2010 and am still here typgin i(however dyslexically) 9 cannot writ e anything by hand any more -my writing got smallerand became completely illegible so i type when i have to write anything

my speech is also much quieter and more garbled/ slurred esp. when i am stressed or tired - all the symptoms are worse

but my swallowing is good and i enjoy my food -- eat every meal as if it were my last much to the dismay of my partner despite not begin able to taste anything -i cannot cook anything any more as i tend to drop things all the time (and break them as well) so have to sit around whilst he does al the cooking and tidying away

it is v frustrating 4me not to eb able to do anything much for myself and i rely on my 2 carers a lot for things to be down for eso i would reiterate what one of the earlier replies has said - DO GET SOEM CARE IN TO HELP OUT as you need to be there for your omam when she needs you to tell her you love her etch e tc

she is still th same person inside despite not seeming the same

have to feed the cat no hopefully not falling into his litter tray like i did a week ago!

lol jill

AND A

[jimandsharynp]

Feel free to "rabbit on" as much as needed. We are here to listen and help where we can. As you are finding out there is no way of telling what PSP will drop on you next. I find that the most terrible part of dealing with the disease. Also, it is not a one-size-fits-all disease. This means you might NOT get some symptoms others get. My dear wife didn't have 24 symptoms other patients often have. She was blessed. Her life ended early compared to most patients, another blessing from God. You will find there are blessings in the disease so look for them and enjoy them when they come. Stay strong for family. I tell every caregiver "You never know who is watching to see how you handle this challenge, so do your very best". Children, grandkids, family and even friends will be watching to see how you react and handle the disease. I always say "Don't allow the disease re-define who you are". The disease will try to do it but you have to be strong and not allow it to re-define you. Hugs, Jimbo

[Hidden in reply to jimandsharynp]

Your advise looks very wise. But I think Iam utterley redefined. Going from active professional, regular soccer player, mental health charity worker, to 24/7 carer. We love each other dearly and would do the same for each other, but I am redefined and will always be so from the onset of the disabling part of the illness. Am I wrong?

jmbb

[jimandsharynp in reply to Hidden]

There is no "wrong" answer. I'd only ask that you ask yourself these questions. Is your sense of humor in tact? Are you able to relate to friends who are leading normal lives? Did your personality change? Did your basic thinking about life change (your gut beliefs)? Did your trust/faith/belief in a higher power change? Please don't send me the answers they are only intended to help you. Your life can be changed by PSP but that should not alter the core person you are. IMHO Jimbo

[Maxine12]

Thank you all it's just nice to talk and let it out what your feeling xxxxx

[Maxine12]

Thank you all it's just nice to talk and let it out what your feeling xxxxx

[wifemo]

Hi Maxine - welcome back.

On the positive side, your son, at age 10, is old enough to be learning a little about life, and I'm sure there are ways he can help your mum to keep going - it's difficult for you as a daughter not to be emotional.

Perhaps he can be the one to make her laugh - later on he will be glad to have been able to help.

Thinking of you all,

Mo

[Maxine12 in reply to wifemo]

Thank you mo, I know he does make her laugh and she is so proud of him. Xxx