What a night we had !!!! Frank hasn't been walking well the last few days & seems to want to sleep more so when he asked to lie on the settee last night I transferred him. Unfortunately even though I lie him on his side he started to choke so with great difficulty I sat him up & sorted him out. This happened a couple of times so decided to transfer him back to his recliner chair. That's when the problems started. He went rigid & fought me the whole way. I couldn't move him so after 30mins or so rang for my son. As he was out,he came on his way home & also struggled but between us we got him into bed as it was 9.45 by then. He said he was frightened to go to sleep in case he choked so I had to sit with him, talking & stroking his head & closing his eyes until he eventually drifted off.
I soon went to bed & was reading my book when a HUGE spider ran down the length of my bed. I screamed & shot out of bed but not a flicker from Frank!!!!
I hate spiders at best of times but because it was so close to me & had invaded my bed I was terrified to say the least. I didn't have my big, strong husband to hug me & tell me it was ok. I was crying, shaking & not far off hyperventilating but managed to get a glass & trap the big blighter. The old trick of glass over it & slide it onto a mat worked & I threw it over the fence into the field. Even a shot of brandy didn't calm me so eventually rang my son " the voice of reason " . Long story short......checked all the rooms, got back into bed & had a restless night. It made me realise how vulnerable & alone I am in the night even though Frank is asleep in the same room.....I WANT MY HUSBAND BACK!!!!!!!!!!!!!!
I used to be the one the family turned to in a crisis but no more!!!! I feel more & more unable to cope.
Sorry about this but feel better now I've written it down. I must take my own advice & keep smiling.
Take care everyone & yes, keep smiling. Love Hazel B xx
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Do you get any help with the caring? After the same sort of experience as yourself it was necessary to call an ambulance when we found he had a fracture from the fall, also after blood test it seemed the sodium level in his blood was extremely low which mimicked a lot of the PSP symptoms - it was a case of heads you lose, tails you lose! Although he will never be released from the PSP other problems have now been corrected. It is not easy managing on your own x
isn't it funny that sometime its the little thing like spiders you hate that seem to tip you over the edge.
There you are every day dealing with such difficult things that keep coming up with the condition, fighting your loved ones cause, supporting them with their worries and there you are like a knight in shining armour trying to fight for the ones you love and somehow you manage that. And yet it was the little things for me, like your spider incident that made me see how lost I was without the dad I knew, and it made me feel ever so vulnerable.
I'm glad you felt better writing it down and at least we're here to support where possible and its good to know you have 'your voice of reason' when you need him
I too do the glass with a piece of card under the spider trick, mainly because the rest of my household are even more scared of them than me
Take care of yourself Hazel and I send a big hug to both you and your Frank
Love Lesley x
Dear Hazel,
The one line that resonates with me was, "I used to be the one the family turned to in a crisis but no more!!!! I feel more & more unable to cope."
I look back on those times and realize, Wow, now I believe there isn't much I couldn't do. I did cope, not always as greacefully as I wanted to, but we got through it. Sometimes though, the cry and the venting is very necessary.
Regarding the choking and the fear, we found twin beds became a good fix, one normal and one with rails and adjustable. This allowed elevated head, and later, repositioning help and safety overall for both parties; the patient and caregiver. It also kept the togetherness!
Best of luck and loving thoughts to you during these times.
Sincerely,
Kathy
Hi Hazel
Sorry I've taken so long to answer but my daughter has just had her first child so I've been pretty busy. When my husband died three and a half years ago he'd had PSP for seven years. Apart from my terrible loss I kept thinking that I would never be able to cope with life without him. I still miss him terribly and have tried to find other things to fill the gap in my life. Surprisingly I am coping. Some days are still bad, I expect there always will be bad days but it is surprising what we can do when we have to.
Hi everyone....thanks so much for your support & kind words. We all help each other in so many ways even though we never meet.
Kay....I had to ring for an ambulance once last year when Frank fell in the bathroom & I couldn't lift him but usually I manage or ring my son ( who lives round the corner ) or even ask one of our neighbours who have all been brilliant.We are waiting for a Carer to come in a morning to get Frank up, shaved, showered & dressed. The Social worker came 4 weeks ago to assess & is not happy at how long it's taking to organise. She wants it to happen within the next 2 weeks or else!!!!! That will help a lot.
Kathy...Frank has a hospital bed which is all singing, all dancing which is a godsend, meaning he can sleep with his head elevated but it didn't stop him worrying the other night for some reason. He also has lots of other aids....4 wheeled walker, wheeled shower chair/commode, grab rails, riser/recliner chair, wheelchair etc. We are very well looked after by the local Sprint Team.
Lesley...thanks for the big hug...much appreciated. I got one from my daughter this morning when she came to cut her Dad's hair ( which I normally do but have now relinquished ). I had a leisurely shower then she cleaned the kitchen whilst I showered Frank...it all worked really well.
Lina....congratulations on your baby Grandchild...this will give you all something to focus on as I'm sure you all still miss your husband so much. Our 8yr old Grandson is our treasure...he keeps me going. I pick him up from school every day to help my son & also to help me...it gets me out of the house.
Am feeling fine now..looking forward to a family lunch tomorrow...I've been told to have a leisurely bath whilst my daughter-in-law cooks the dinner. How good is that ????????
Take care everyone & keep smiling. Love Hazel B xx
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