Does anyone else get weary of having in home health care? Although I am thankful that Medicare provides this, it's feeling like an intrusion. Lost of different people in and out of our home every week. What little time we have to ourselves when we're not dealing with my husband's needs are spent with interruptions. It's an additional source of stress and I don't know if the therapies are doing much good at this stage. My husband is no longer walking. I do want him to maintain upper body strength but think our caregiver can have him do some exercises on his own. I think I'm going to ask that the services be discontinued in the next couple of weeks.
Any thoughts out there?
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journeyofjoy
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Of course it is an an intrusion, unfortunately a very necessary one. I hated the constant troop of people going through my home, but they did help Steve, gave him something to look forward to, someone who smiled laughed with him, more than I could do, due to stress levels. Made me "behave" for a little while. They eventually became our social life, friends who knew what we were going through. It was a big loss when it all stopped, for both me and the dog!
Perhaps you need to look at your diary and make the timings a bit easier to cope with. Keep one day completely free of visits, that does help, but don't let anybody go.
Sending big hug and much love
Lots of love
Anne
Yes, I got very tired of home visits. I had to work around the therapist schedule. While waiting for any surprise Larry might decide to throw my way. Plus try to do all the domestic stuff.
I got very tired of home visits like you i did not want any intrusion . I used to wait for some one to come from the early morning until late night just to come to help for a few minute.
I can't get anybody on time to help me when my husband want to poo. You might need to get him from bed to the wheelcomode and push it over the toilet pan without the backet this way he does not need to stand up in the toilet.
Talk to them about having him do some exercises with your help and cut back their number of weekly visits. Once they show you the methods they are using I don't think it'd be that hard.
Thank goodness others feel the same I thought it was just me
My tiny home that mum came to stay in for a while three years ago has become her forever home and the army of bodies that have marched through over the three years to attend to her has been unbelievable but unfortunately necessary.
It's funny how our circumstances influence how we feel about things. We lived in a remote area with no services when my husband got sick. When we first started needing help at home with my husband, I felt so lucky to have the hospice nurse come once a week for an hour and the home health aide come help with bathing twice a week for around an hour. We never had any luck getting any therapists to come to the house. The hospice workers were about the only social contact we had and it was very lonely at times so we welcomed their visits. I wouldn't discourage any therapists you're lucky enough to have, but you might see if you can schedule them at times that would work better for you. I hope you can work something out so you can have your peace and quiet, but benefit from any therapy that is offered in your area.
I too would be wary of refusing "help", you may not feel you need them too much at present or they are not offering much benefit but when a down turn comes and you are "on the books" you will get help much quicker than if you need a referral. When Mum was started losing weight & her swallow started to deteriorate, the SALT team already visited and were able to come & see her & give some advice within a week, the Dietician was a referral and took 4 months, by which time Mum's weight loss had been more than 2 stone.
I have found people have been pretty flexible in arranging visits - they may only be in Mum's area a couple of days a week but they do try and fix a time which is suitable for us.
Maybe you can suggest they come less often if it's becoming a real issue, so fortnightly instead of weekly, or monthly instead of fortnightly, but I wouldn't let them go.
I completely understand where you are coming from but don't let them go. As the disease progresses you will need them more. I felt the same initially but steadily had to increase the help. I was so glad of that help. My Liz has been gone 18 months now and still have contact with many of the regular carers. Sending hugs and prayers for the future. 💔
I've done Tai Chi myself and really like it! It's very relaxing and good stretching. My husband is beyond that now. He cannot stand for longer than it takes to transfer and can no longer walk. Enjoy Tai Chi and anything else you can do to move your body. It's good for all of us!
I too found it very intrusive to begin with but found that we built up very strong relationships with most of the professionals, esp the Speech and Language Therapist, she went way beyond the call for of duty to help us and we almost became friends, bless her. Having to call the GP in on a regular basis in the last few months allowed us to develop a trusting relationship with her and she fully understood our plight despite the fact she had never heard of PSP before visiting Ben. There were some proffessional visitors we were always glad to see the back of but generally they were a lifeline as Bens disease progressed. I thank each and every one of them.
We will Never do in home or any therapy again!! What a disaster😄 There is no evidence that it does much good, I understand. We all know you need to move it or lose it. My opinion, of course is - don't waste your time. Use your own good sense and your high school gym class experience to keep the parts flexible and do the deep breathes and looking up - I make my huz look out the windows and see the clouds and check the cob webs in the corners to keep that neck from getting stuck. I also make him sing. Once in a year in home therapy for a few weeks isn't going to get it.
This is not to say I think what will be won't be ~ I just know my huz will not follow through with any exercises on his own -- and I sure don't have time for therapists not showing up or changing the times and whatever else they come up with! I also am not putting him in the car to take him to therapy, when I know it will all be for naught unless one of them moves in with us 😱
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Not sure but think this may be the start of the end :-(
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