Mom is at her wits end.

[PhoebeK]

Hi, my dad has PSP, he has had it for 7 years now.  He has just been moved from living in a assisted living retirement home to being in the hospital for 5 weeks to now living in a care home.  Unfortunately in the area of the care home where my dad now resides (due to his choking), most of the other patients have dementia.  (My dad has signed a DNR) My dad was very active playing games every night in the assisted living home to not playing cards very much at all in the care home. My dad is in a wheelchair a big portion of his day, he uses a walker in limited intervals, mainly to go to the bathroom. Dad communicates with a IPAD which gets frustrating as he has limited eye sight.  My dad also had his upper teeth removed & has a upper denture which he finds very uncomfortable.  He is not eating very much. He doesn't seem to have much of an appetite anymore & is refusing most of the food he gets except Boost or Ensure.  My mom is at her wits end.  My dad mind is still fully intact, if you have any suggestions to help with my dad eating again, I would greatly appreciate anything.  Thank you.

[Kevin_1]

Hello Phoebek

Gosh it sounds tough!

Are you in the U.K.?

If so this applies:

My guess is that he is in a Nursing Home not a Care Home because of his choking.  Nursing Homes are considerably more expensive because of the clinical standards they have to meet.  The Health Commissioners issue contracts to particular Nursing Homes on a competitive basis.  They therefore are not keen to use Nursing Homes, which might be nearer at hand, but with whom they do not have a discount arrangement.

Your Mum should be able to visit regularly and easily.  You do not give distances.  You, or she, needs to talk to the Nurse from the Commissioning Group and assert her right, and his, to regular visits. If you are not listened to then you might just mention that you are going to seek advice from the CQC. The Care Quality Commission, who inspect the Commissioning Group.  You might not actually get advice from the CQC, but the letter you write will go in a file to be pulled out at the next inspection.  In other words it carries a lot of weight and they know that.

Sorry this is turning out to be rather long.  The Commissioners might not be obliged to offer a local placement, but best practice says they should.  Failing that your Mum should be seeking assistance with Transport.

I hope this helps a little.

[Cuttercat]

Dear PhoebeK,

My husband is at home still and stable but it's the choking that is our biggest issue at the moment.  He has a DNR and my biggest fear is he will choke to death and I will find him.  He is afraid to eat now and asks for everything to be pureed.

I know how difficult it is and am grateful for this website.  It is the only thing that seems to be helpful at the moment.  Hang in there and thanks.

[PhoebeK in reply to Cuttercat]

Hi, thank you so much for your email and concern.  My mom felt the same as yourself when my dad lived with her, that she might find him choking to death. 

 My dad is gets his food pureed as well and so far he finds it very unappetizing, so that's why he is supplementing with Boost & Ensure.  My 4 siblings and I suggested to our mom that she stay away from the care home during meal time, as she gets far too upset when she sees that he isn't eating and he is losing so much weight.  He has only been in the care home a week so it's still an adjustment.  PSP is such an awful, awful disease!

I too like this website, as there are so many people that do not understand PSP.  It is so nice to be able to communicate with someone that knows what my dad is going through.  Thank you again for your reply, it means so much.

All the best to you and your husband. x

[Cuttercat in reply to PhoebeK]

Thank you PhoebeK

[LynnO]

My husband ability to swallow comes and goes. What he enjoys most are ice cream shakes. They're good and easy to get down. Also full of calories.  Does your dad enjoy ice cream? it might be a way to give him something he enjoys, maybe using ensure or boost instead of milk to mix with them. The added calories might be good if he's losing weight. I figure at this point anything that taste good to my husband, even if it's not the best health wise,  I let him eat it.    Can your dad get any solitaire card games on his ipod?  or maybe if someone has a large screen laptop where he can make the items on the screen bigger that might fill his time and keep his brain sharp. It would be frustrating and hard to be in with people who couldn't really communicate or challenge your dad, especially if he doesn't have any dementia with the PSP. Just a few ideas that have helped for us.

Take care, LynnO

[PhoebeK in reply to LynnO]

Hi and thank you for your reply and concern.   My dad has always been a big ice cream guy but I can't say that I have seen him eat ice cream for a long time.  I will certainly suggest this to my mom and hopefully try mixing the ice cream with Boost or Ensure.

I like your suggestion about playing cards on the IPAD or possibly a laptop, I'll pass it on to my dad. It's better than looking at the 4 walls.   He was so used to having so much social interaction with the people in the assisted living with playing cards, that he is missing that one on one time.  My dad has only been in the care home a week so hopefully in time they can find some people that can challenge him to keep his brain sharp.  

All the best to you and your husband. x

[easterncedar]

dear Phoebe, I recently read something about how food issues are some of the worst for caregivers because we associate the provision of food with the expression of love, and sometimes it seems that the only thing we CAN do to help is to provide food, but that very often food isn't what the patient needs or wants, or even physically is able to use. So,  you say your mother is at her wits' end, but really, how is your father feeling? Does he WANT to eat?  If so, could new teeth help? If he isn't very mobile, perhaps he doesn't need to eat so much? Or is it possible that the problem is that he isn't interested in living?  Which leads to questions of whether that can be addressed by treating him for depression or providing him more activity and social outlets or, please excuse the bluntness, whether he should be permitted to refuse food as he sees fit?

I, myself, am pretty much devoted to over-feeding my sweetheart; I know how much of my caring is expressed just in that way, so please don't think I'm unsympathetic. 

However, I like to imagine I would know when and be able to refuse food for myself if it came to that for me.

Best wishes, Easterncedar

[PhoebeK]

Hi and thank you for your reply and concern.  I really appreciate your feedback about why my dad isn't eating.  At this time, we are unsure what it is, on why my dad isn't eating.  He has never been one to be depressed before but with him moving to the care home from the assisted living was a huge change in his life.  He went from being very social to living in a place that he can't communicate with anyone in his ward; living with my mom for the past 62 years to living in small room with a bathroom; being pampered by either my mom or home care workers to seeing the staff at the care home sporadically throughout the day.  All this is a huge change in his life.  With him being a self-made entrepreneur since he was a young boy to now living in a place where he doesn't know anyone and cannot communicate with them has to be very hard.  I know I would be depressed...to say the least.  

I live 1000 miles away from my parents so I can't be there to assist with this transition except through multiple phone calls.   I do feel that my dad does want to keep living but needs to know that he has something to keep living for.  We do need to find some resolution for him so that he is comfortable and he can live out the rest of his life as comfortable as he can.  

Thank you again for all your suggestions, I will have a conversation with my mom about them in the morning.

All the best to you and your sweetheart.

[Amilazy in reply to PhoebeK]

I relate to your dad's experience in the care home, my wife is in a very good home but she is 20 years at least younger than anyone there and does not have dementia which seems to be main clientele.  The staff are very good but the demands of the other patients mean that if I was not there M would only get an hourly check out, nothing like the attention she had at home.  Luckily I can visit her daily for as long as we need.

She lacks stimulation, unlike you dad she cannot feed herself or play cards or now even watch TV.  She has warm and comfortable suurroundings and I know it is the place of safety.  So I am beginning to accept that this is the right place for her.

Your Dad may not like the lack of stimulation but it is safe.

Best wishes Tim

[Kelly55]

Hi phoebe, sorry to hear your family are having such difficulties. Has your dad discussed his wishes about having a peg fitted? That could be one option. I hate to suggest drugs as solutions but my mum started losing weight before Christmas and wouldn't eat. Her mood was very low etc too. She started taking Mirtazapine which is a mood enhancer but also an appetite stimulant and we found that along with other med tweaks improved her mood and appetite. It also comes in orodispersible form. Mum has a peg now and a good appetite but as previous posts have said let your dad eat any foods he fancies even if they are ones we traditionally avoid. High calorie food like chips and ice cream  or mashed potato with lots of butter or cream. Add butter or calories wherever possible. Full fat milk milkshakes with ice cream and syrup etc. if he enjoys the food and his mood is bit better hopefully his appetite will return. Best wishes X 

[easterncedar]

Where in Canada are you? I was raised in sight of Canada and spent my happiest weeks at the family cabin in Ontario, so I have a fondness for your homeland!