So, I thought I would share something this morning that I am dealing with ...
I am a full-time caretaker for my sweet Momma, and would have it no other way. Being self-employed, my husband and I have been able to shift our responsibilities, allowing me to stay home. So since June of 2018, I have been full-time ... but, I am not super-human, and for the last few months I have been actively interviewing additional help.
I have three brothers, two of which live within 5 miles of our home --- not to mention, that we sold our home of 15 years, and built a house to accommodate a first floor suite for my Mom to live with us comfortably, and ... purposely selected the location to be closer to family for additional help. Wishful thinking. My mom has actually said to me, that she doesn't know what she would do if she didn't have a daughter, because my brothers just stop in for 30 minute visits. I love them dearly, and they are good guys, but its like they don't want to face the reality of what is going on with my Mom's health.
I often wonder, when they arrive and she looks beautiful, everything in place, right down to her fresh hair style and make up -- as she always has looked, beautiful Momma. ... Do they think she is doing this on her own??? I really think they do.
So...all that to say, I had enough recently, and tired of some of the comments they were making -- clearly they have no clue. I sat them down, and expressed my concerns for the changes I am dealing with in her care. I wish you could have seen their faces when I explained that she has been wearing adult briefs for over a year, and that the she cannot do the basic personal hygiene tasks on a daily -- (i.e., bathroom, potty needs, shower, brushing teeth, etc.) Now -- because of her right hand dealing with some significant dystonia, I am having to help her eat ----
Hindsight -- I should have discussed this earlier with all of them, my fault.
My recent dilemma (yesterday): My brother came to me, and wanted to offer the help of his girlfriends daughter to come in and be a caretaker for my Mom, helping hand --- now, she is an EMT - -well qualified in that area, and I guess she has worked with adults with needs comparable to my Mom. My Mom knows this gal, and has for years -- my Mom seems to do better with someone she doesn't know -- its personal, and she has always been modest with her body. Just a couple days earlier, we hired a wonderful lady that my Mom just loves, and we had her already come in for a few hours, and plan to use her 2 - 3 times a week, so that I can have a few breaks.
Needless to say, my brother is not happy and is now offended at denying his offer.
Cant win sometimes ... thanks for listening.
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bazooka111
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Oh dear. Offence can be so easily taken. Just an idea but to defuse the situation, would your Mom be ok with this girl coming and sitting with her and doing something your Mom enjoys or over a meal time, or giving her a hand massage or manicure or something whilst you have a break or would this offend the girl? So glad that you have found someone to help that your Mum does like to help you. God bless. AliBee x
Never refuse help of any kind....we desperately need it even it’s just to have a cup of coffee and chat....as of tomorrow I have excepted help for every morning for 1 -2 hrs to help me get my husband washed and cleaned up, change his bed and give the day a better start for me....he’s totally incontinent , can’t walk or manage his personal care anymore....plus the confused state and unable to communicate. I need to pay out of pocket but caretakers need help, too sometimes....we have a tremendous worth....
This is not the time to be a martyr...accept any competent help..🤫
I'd have to agree with Alibee, if this lady is willing to come and help take it. Even if just for a few hours here and there, it'll give you a bit of extra "me time".
Invite your brothers over for a whole day, let them actually see what you do in a day's time. As the ol' saying goes Seeing Is Believing.
Take the help from both ladies. From reading in this Forum, it seems we will need all the help we can get and should not be turning help away. You were going to use one lady 2-3 times a week. Use her 2 days and your brother's other 2 days. I am sure your mom will enjoy the distraction from different ladies and you will enjoy some rest too.
So sorry.....but you got great advice. I think if you can work out a specific time and day for your brother's gal, it would give your mom something to look forward to and the "helper" can plan her time accordingly.
I know what you mean. I shared some real humdingers of emails with my brother early December. It did clear the air. I've learnt to email him more so he can't turn round and say he never knew even it was something I was always going to do with Mum.
Hi bazooka111,
You’ve got some excellent practical advice here already. I’m sorry to hear of your situation . I understand just how hard it is for you. However, I’d also like to suggest that you cut your brothers some slack. You see, I’ve been in both of your places - been the primary caretaker for my mother who died of cancer, with my sister only dropping by to sleep over in her old room, and now the roles have reversed - my father has PSP and my sister is his main “carer” - in the sense that she manages the two full time carers who look after him and runs his household (she lives separately), and I live in another country across the world. I make multiple international trips just to be able to see him and spend time with him but it’s incredibly expensive, so I’m limited by what I can do. I’ve come to learn that compassion goes a long way in giving oneself peace - if you stop resenting your brothers, it will only lessen your own stress and distress. I know it’s incredibly hard - like I said, I’ve been in both places. But try focusing on what would make your mother happy, and let go of the judgment. Hope your journey ahead isn’t too hard.
Lots of excellent advice (naturally!) and following on from AliBee's comments could this other lady be more companionable in her role rather than less on the physical needs so your mum feels less like a patient to be cared for. Plus the more visitors your Mum's happier with the better. My mum says it's the lack of company, particularly with those who know who she was and not as she is now, that can be the hardest. Little and often is what she prefers with visitors. Good luck!
When the patient is treated at home, managing external aids (which are totally necessary so that the main caregiver does not collapse) is one of the complicated tasks that the main caregiver of a PSP patient has.
In our case, fortunately, we have the great help of a person who knows our house and family very well and who, applying a few hours a week, effectively directs the basic tasks of the house (clothes, meals, cleaning, etc.) as well as the organization of hired caregivers.
One experience is that we do NOT always have the "ideal" caregivers and the patient is NOT always treated by people to their liking. The patient is sometimes frustrated that he cannot be treated by the person of his choice.
The structure of patient care is unstable and changing. Both the patient and the primary caregiver have to get used to the changes pursuing the ideal objective of efficacy, efficiency, warm treatment, acceptance by the patient, stability and cost.
Kim, NEVER turn down offers of help! Let your brother's girlfriend help as well. She will report back the things that are happening, which will make him wake up a bit as well.
We all think that we are the only ones that can do personal tasks for our loved ones, but put a uniform on somebody and that person can do what they like to you, in fact actually be more comfortable. I hate the thought that my daughter might have to help me, sometime in the future.
Kim, well done for getting extra help in, you need to take more rest,your Mum needs you to take more rest. I have already said, anyone can do the nasty side of caring, only YOU, can organise it and make her feel loved. Every single one of us on the other side, never wish we had cleaned our loved ones bum a bit better, but we all regret not spending enough time, telling them we love them.
Kim, yes, you should have sat your brothers down earlier, as you said but we are all on a learning curve with these terrible conditions. That said, I agree with some others on this site that you can do some good -- for your mother, yourself and your brother-- if you accept his offer of help (this other young woman) in some capacity. (I have found, since I assembled a caregiving team of graduate students from a local university , that my husband enjoys seeing a variety of caregivers and having different people stay with him.) Your brother was listening, and seems to have responded constructively. Our children are out of state and our options for caregiving are limited. I have two daughters who visit regularly, stay for a while and show their father tremendous love and care. but can't help day-to-day. I also have a son who is a long way away but has not visited his deteriorating father for at least six years , rarely calls and doesn't answer his phone when we call him unless it is convenient for him. That is a heartache. A son, like your brother, who "steps up" in the best way he can think of is a good thing. His solution isn't perfect, but then none of them are, even our own.
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.
It is worthwhile for the caregiver to report on the typical progression of the disease and then take each day as it comes. All patients are different and even with a lot of accumulated experience about the disease the caregiver must be prepared for what he did not expect.
Finally, reproducing the phrase of Anne-Heady : "Never forget to get plenty of rest, ask for help and most of all, ditch the guilt!"
You have been doing a great job but you need to share the load if you are to continue. Some great suggestions and advice already. Get your brother's involved, even indirectly. Prayers for a resolution to your predicament. 🙏🙏🙏
You are definitely doing the right thing getting in help, I could never have coped on my own and good carers make such a difference, as well as bringing the outside world to your Mum & giving her some different company. I can understand your Mum being sensitive about personal care with someone she knows, but as others have said, you never want to turn down help. I think the suggestion of splitting care is a good one, the lady you have found could do morning & evening care and the one your brother has found could help with meal times. I found it far more challenging feeding my Mum than I did cleaning her up, whatever mess she got into at whatever hour of the day or night. Identify the tasks that take the emotional toll on you & get help with those.
And yes get those brothers round for a whole day, get them to sit with your Mum for an afternoon whilst you go out & see how they feel when you get back. Let them see it for real.
I have been reading and following posts here for about 2 years. My Mum was diagnosed with PSP in 2016 after a couple of years knowing something was wrong - feeling not quite right, some falls, small scrapes with car, apathy, missing the chair when going to sit down etc. Doc referred to geriatrician! Had cataracts done in 2015 as felt her vision was not right. In early 2016 she had a crash that wrote her car off so that made the decision to stop driving and dig deeper requesting neurological referral. When she got the PSP diagnosis it was hard but she felt it explained her issues. Your posts about your mom remind me of my mum sometimes- they seem to be at a similar stage - we have just gone from Sara Steady to electric hoist as power slowly going in arms to pull up. She can talk but it takes such an effort that she tends to keep it to a minimum - she has had the ‘cough it up’ experience that you posted about and the respiratory symptoms of chesty sounds - but no infection thankfully. She has always been an independent lady - worked as a nurse and lived alone after my dad died 10 years ago - helped us all out with collecting grandchildren from school etc. She lives about 15 mins drive from me and for the initial years after diagnosis I was so involved, going to support meetings with her, calling in 5 or 6 times a week sometimes 2/3 times a day if needed and bringing her to our house for dinner etc - wanted to convert our garage space to a separate living area for her but she wanted to stay in her own home. So as things progressed she agreed to carers who now come in 3-4 times daily with myself and my siblings all doing certain ‘shifts’ also. What prompted me to reply this time is the situation with your brothers - last year my sister who had lived abroad come back with her family and moved in with my mum. While this has taken the pressure off somewhat - and even though we all get on quite well - it can be very hard for me now and my family to go in and spend the same time with Mum as it feels like we are going to their house and not to hers. I am torn between missing the closeness that had evolved with Mum and being grateful that the load is shared more. So I can imagine your situation a little - all the little things (and some not so little!) that have to be done that nobody sees and also your brothers side where they miss out on a lot of the hard work but also a lot of the joy of being on the spot for the good moments! I know what you mean about having someone ‘external’ for the personal care - mum is ok with us daughters helping and with outside carers (who we have been lucky with) but it’s a bit too personal for her with people she already knew - my brother would have helped with this if needed but my mum didn’t want that for him or her (so he’s off the hook mainly but doesn’t know how to help!) So -after a longer post than I intended- I suppose we just all keep doing the best we can while living with this unpredictable cruel disease and knowing it’s not easy to do that without some fallouts with those we love along the way but life is short & we need our families so we need to keep trying. Xx
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Traumatized by psp!!!!
Get by with a little help from your friends
