Advice on First swallowing problems

[Hdee]

Hi all, this is my first post as a carer for my mum with PSP, she is 73. She was diagnosed officially a few months ago but has been suffering from the symptoms for a few years and was incorrectly diagnosed with vascular dementia. She seems to have gone down hill recently. In the past few days it seems she is struggling to swallow a bit. She says her food is ‘getting trapped’ and she has been asking for her indigestion tablets. She has only eaten about 30% of her food today. Does anyone have any advice on foods that may help and of how to get support from professionals, who they may be, and how to go about support please? Thank you.

[Yvonneandgeorge]

Hi you need a social worker, you also need to speak to the speech therapist, and purée food is the way forward. My husband had PSP he went through all that, which can be very frightening. I hope you get the care you need, we do you live? My husband passed away in 2018. Yvonne xxxx

[Hdee in reply to Yvonneandgeorge]

Hi Yvonne,

Thank you for your message and for your advice, I’ll definitely contact our local council about a social worker, we live in South Oxfordshire, and I’ll contact mum’s

Gp about a speech therapist referral. I’m sorry to hear that your husband had PSP, it’s such a terrible thing, but your reply has made me feel supported already... so thank you.

Love Hdee

[Nanny857]

Hi Hdee, your mum needs to be referred to a Speech Therapist, her GP can make the referral. The ST will advise on a soft or pureed diet depending on how much her swallow has deteriorated and if she needs her drinks thickened slightly.

Hope you get help soon.

Lots of love, Nanny857xx

Ps. Can you let us know were you are. We have contributors from different parts of the world and access to help differs throughout.

[Hdee in reply to Nanny857]

Hi Nanny857,

Thank you very much for your reply, it’s really helpful. I’ll contact her GP tomorrow. We are in South Oxfordshire, it’s such a rare condition it would be good to know how many other people nearby are going through this.

Love Hdee

[Kevin_1 in reply to Hdee]

Hi HDee

You've already had the best advice on speach therapy / Salt Nurse.

Also for a social Services assessment. This will cover wider needs and those pertaining to you as a carer as well as your Mum's needs. They will also advise on other services that might be helpfull.

Adding - Seek a referral from you're GP for an Occupational Therapist , if you haven't got one involved already.

They will assess your Mum's home and her needs and provide free equipment and alterations as well as giving advice on her mobility needs.

Lastly re. local support etc. Telephone the PSP Association. They may likely have a local Support Worker. They are amazingly good at giving you support, advice and information as well as helping you to get everything up to speed.

There may also be a local PSP Assoc. Support Group. These are generally very good too. If that sort of thing works for you or your Mum.

All that aside the PSP Assoc. Help line and their information docs. on their website are exceptionally good.

Hopefully this is useful

Best to you both

Kevin

Sorry for errors here - I'm on a small screen right now - Ugh!

[Hdee in reply to Kevin_1]

Thank you so much Kevin_1. That’s such a helpful reply. I’m waiting for a call back from mums gp. Thanks again, Hdee

[Kevin_1 in reply to Hdee]

You most welcome

I'm glad it was useful.

If you haven't done so already you might consider Lasting Powers of Attorney. These will enable the nominated Attorney to make decisions on your Mum's behalf when she is no longer able to do so as well as managing her financial and property affairs on her behalf. They can be completed online and you can save your work and complete them over as much time as you need.

Good luck

Best to you all

Kevin

[Hdee in reply to Kevin_1]

Thank you Kevin. Luckily we have already done this when mum was diagnosed with dementia last year. It’s a relief to have it ticked off as it was touch and go whether the doctor would sign the papers due to mums inability to speak coherently!

[Amskibakes in reply to Hdee]

Hi Hdee, I am in The north of West Berks, very close to Oxfordshire and currently caring for my father in law with my husband. I just found this forum today, when I was feeling particularly drained. Sorry to hear that others are struggling with this, but equally, good to know there are people out there who understand!

[Hidden]

I chopped everything up. Made everything as small as I could without puréeing it all. Made sure anything that might cause a problem had a sauce on it.

Are you feeding her yourself? When Larry started to give up trying to eat by himself I fed him to make sure he got a whole meal into him.

[Hdee in reply to Hidden]

Hi Jeff166,

Yes I’ve started feeding mum most times, it’s a strange role reversal! Thanks for your support.

[LuisRodicioRodicio]

Hi Hdee!

I'm sorry PSP has entered your family.

The suggestions of my "chat" colleagues are wise and based on their different experiences. In my case they have been very helpful.

This disease manifests itself in a similar but different way in each patient. The participants in chats like this offer practices and solutions to learn from, and through the "trial and error" method, achieve a quality of life with interesting moments despite everything.

I am not a phisicyan. During the 8 years in which we are living with PSP, I have been collecting information on the PSP stages as well as solutions and experiences for the different symptoms that may appear based on our own experiences and those of other chat members to offer everything as a suggestion to PSP patients and caregivers. The information is done with good will and with the best technical criteria that I can provide, especially thinking of the support of caregivers.

The information I have sent you through the private mail of this chat are suggestions that I submit for your consideration in case they are useful.

Hug and luck.

Luis

[Hdee in reply to LuisRodicioRodicio]

Thank you so much for your email and support. I’ve got lots to research and think about and I’ve contacted my mums Gp as a first step. Thank you

[Doublereeder]

Hi Hdee,

Can you get your GP to refer your mum to a Parkinson's nurse? They in turn can contact the whole team SALT/OT/physio/hospice nurses with quite some speed we found in both Devon and Essex who can also help with equipment.

Would also highlight again how wonderful our NHS staff are who were visited as many patients as they could prior to the impending lockdown last month and how quickly new equipment was put in place so Mum was safer especially I now can't visit her. They're still looking out for their non-COVID patients.

[Hdee in reply to Doublereeder]

Thank you so much Doublereeder, I’m waiting for a call from my mums Gp and I will ask her about the referral to a Parkinson nurse - would be good to have someone to coordinate care. Thank you for your support.

[Katiebow]

Definitely seek help from Speech and Language Therapist (SALT) they give advice on types of food to avoid, sitting position when eating and explain what is happening to the swallowing mechanism that is causing the choking. Many are sent for a swallow test too. You are advise to finely chop food to begin with and then I got a Nutriblender to blitz food as the swallow problem developed. I also bought tasty good quality ready made meals and chopped/ blitzed each element separately so that my husband could taste them individually . There are readymade food delivery companies that deliver puréed meals and have heard good comments on here about them too. I found it to much of an effort to always cook and blend homemade food for him so felt no guilt about have ready meals. I used to freeze thickened fruit juices and diluted fruit squashes and then blitz into an ice slush which he really enjoyed as unthickened drinks began to cause choking issues. It’s surprising how resourceful you get to try to overcome problems you encounter along the way. Keep asking questions and someone here will have a solution that worked for them.

Sending love

Kate xx

[Hdee in reply to Katiebow]

Hi Kate, thank you for taking the time to reply, you’ve given me lots of tips to help my mum. I’ll look into the food delivery companies and I like the idea of the frozen thickened fruit slush! Thanks again

[AliBee1]

Hi. You have already had some brilliant advice so I won't repeat that. Speech and Language are the ones to do a swallowing assessment but in these current times I am not sure what is happening. In the meantime just a few tips from when my husband started with this problem: little and more often [it is hard work to eat if you cannot swallow easily] don't worry about whether there is fat in things so thick yogurts, Yazoo drinks, custard and if possible well mashed banana folded in, sauces with soft food [Nigel loved soft mashed fish with sauce], we were told not icecream or jelly as they change consistency in the mouth but I am not sure others have been adviced this, mashed potato with cheese grated into it etc. Anything she really fancies if it can be mashed down or pureed so that it is smooth. Hope this helps. Good luck and big hug AliBee

[Hdee in reply to AliBee1]

Thanks AliBee1, I hadn’t thought of soft fish in sauce, mum will love that I’m sure. Thank you for your support.

[AJK2001]

Hi

Definitely need a SALT assessment for her swallow to be evaluated.

If they suggest a modified diet I found toddler ready meals worked well - less chewing needed and smaller portion size, think most supermarkets do these now, Sainsbury's & Waitrose certainly do. Also Wiltshire Farm Foods (they deliver frozen ready meals) do different ranges, small portions for smaller appetites, mashable meals and pureed meals which are then reformed to look like proper food, go on their website & request a brochure.

If you are wanting to up calorie intake creamy desserts are a good option (Pots&Co do some very nice fruity & chocolate ones, which are as calorie dense as anything a dietician can prescribe & taste much nicer) and using full fat milk for hot drinks & cereal is a good idea - you can also fortify milk with milk powder to give a protein boost.

With regard jelly & ice cream, it's often been mentioned on this site to be avoided & I can understand why, but this became Mum's favourite food (used to tease her she was such a party girl eating jelly & ice cream all the time) so we just made sure she only had very small spoons of it at a time & made sure she had swallowed before giving her more.

[Hdee in reply to AJK2001]

Who wouldn’t like to eat jelly and ice cream all the time!!? Thank you for your reply, it’s given me lots of ideas to add to my list of things to research. Thanks again.

[AJK2001 in reply to Hdee]

A pleasure, that's whats so great about this site, you gets lots of ideas and can pick & choose & try different things to see what works for you. There is no one size fits all with PSP!

[Kevin_1 in reply to Hdee]

Liquidising food works wonders. Use something like milk to thin savoury foods, or lots of sauce.

Tip. For a savoury dish do the potatoes, veg and main dish seperately. That way its more like a meal and each part can be enjoyed.

Keep pasta little on the coarse side.

Chocolate sauces!!!!!

Warmly

Kevin

[gasmanchris in reply to Hdee]

My wife likes jelly and it causes little problem. The best we find is adding a small tin of evaporated milk (Carnation type) to a jelly tablet made with half a pint of boiling water.

[Hdee in reply to gasmanchris]

Thank you, mum loves evaporated milk so that’s great!

[Sunsetboulevard]

You’ve already had all the advice you need I think . Do follow the advice . I live in south manchester and the care and help we have been given is incredible . We are also supported by a Macmillan team which has provided us with coordinated care , very important . Our GP. and a member of the team phone us on a weekly basis .

Someone mentioned the PSP association. I strongly advise you to contact them . They are an invaluable and wonderfully supportive organisation .

Take care .... x

[Hdee in reply to Sunsetboulevard]

Thank you for your reply. I’m going to speak to mums gp today, I’ll ask about a Macmillan team. Thank you.

[Hdee]

Thank you everyone who has given me advice and support through your replies. I have lots to work on now. Thanks again

[Cazash]

Hdee.

Hello I too am fairly local to you Warwickshire and have walked this road with my late father in law. If I can give you any pointers please message me

Caz x