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Questions on elderly man with RA

Posted , 8 users are following.

Goldilocks1950
Goldilocks1950

My husband is 74 and has sarcoidosis, anemia, cirrhosis, and a few other health issues along with RA. His mom had RA , too and he has just been diagnosed with it in the last 2-3 years. He has pain all over and living in SW Missouri, cold fronts affect our weather constantly throughout the winter. These really take him down and these past 4 to 5 months, he has been sleeping more and more and is so weak all the time. I have tried to encourage him to try to get up and walk some and we have a home health physical therapist who comes by twice a week to do a little walking and chair exercises with him. It just seems like he is letting this disease, along with all the other health issues, take all the life out of him. He seems to be content to just sleep for days at a time anymore. Its getting harder for him to swallow his handful of pills without getting choked anymore and he has complete urinary incontinence. He has a fantastic primary care doctor, numerous specialists, a good VA doctor and a little home health nurse and they all keep close tabs on him. He also has finally admitted the ptsd from his Navy service needs addressed and will start a few visits at the local VA clinic for this...providing I can get him up and bathed and shaved and to the meetings. My question: Is this constant sleeping, weakness, and general lack of interest in life a part of being older and having this stinkin' disease? His doctors all say that with his combo of health issues, it has become his "normal". He is so very weak most days that he can barely get to the kitchen using his rollator and that is about 20 feet from his bed. He also has benign essential tremor and struggles to eat and drink. Just looking for anyone's input and thanks!

1 like, 16 replies

16 Replies

  • joy59804
    joy59804 Goldilocks1950

    Posted

    Feel for you it is an awful desease and with everything else must be so difficult and also for you. If he has help I would suggest that you too may need some support from somewhere else Im sure it's often the other partner that feels it as much as the person with it. You will have to find interests for yourself and get a break from this or it will bring you down too. When you feel tired and in pain you don't really care any more and I would say he is def depressed . May be some help along those lines but you can only help him if he wants to help himself. I wish you luck and hope x

    • Goldilocks1950
      Goldilocks1950 joy59804

      Posted

      Thanx for your response. You are right, he has to want to help himself and I am not seeing that he has much interest. We saw a mental health doc this past week and some of his answers to her questions took me by surprise. He used to be so social and always laughed and joked a lot. Unfortunately, he chose alcohol to keep the bad dreams at bay and drank heavily for many, many years so that has also taken a huge toll. He and I have only been married 7 years and he has been sick nearly all of them, but nothing like he is now. I do crafts and read a lot. I am younger but still old enough for social security so have quit work to care for him. I have lots of time for my crafts when he sleeps and am a homebody by nature so I am ok with being home. Money is super tight with just our social security and his 30% military disability (asbestosis) but I have a strong faith in God and He will get us through this!
  • Gloria814
    Gloria814 Goldilocks1950

    Posted

       It sounds like he may be suffering with depression.     Anemia can cause extreme fatigue as well as cirrhosis so that adds to the RA symptoms.   Have you looked into funds provided for those suffering from asbestosis in addition to the disablitly he receives.?   I am referring to lawsuits for those with the disease.    Great that he has a fantastic primary care doc,, home health nurse and home PT.  

    All these medical conditions are taking their toll.   The 'general lack of interest in life, constant sleeping are more signs of depresson in my opinion.     I do hope you are getting support also for yourself.  Glad you have your faith and your crafts also    Hugs and prayers for you both

    • Goldilocks1950
      Goldilocks1950 Gloria814

      Posted

      Thank you, Gloria. He does not have mesothelioma or any type of cancer and I thought that had to happen before there was any help through the asbestosis lawsuits. We could use the help but I am thinking with the way he has gone downhill rapidly these past few months that his body is just totally worn out and although I hate to voice it, his days on earth may be getting pretty short. Again, I appreciate your response. Its good to have a place to come to and discuss these health issues and hear other peoples thoughts .
    • Gloria814
      Gloria814 Goldilocks1950

      Posted

         Yes,  I believe  you are right regarding mesothelioma vs asbestosis in filing a lawsuit.   Your spouse has a lot of medical issues affecting his health so it is hard to sort out what is causing his lethargy and sleeping so much.   Being supportive and 'there for him now'  offering the music he likes as you suggested and as the time comes perhaps looking into palliative / hospice care when the time seems right     All the best

    • Goldilocks1950
      Goldilocks1950 Gloria814

      Posted

      Thanks for your kind comments. I will try to take care of him as long as I can here at home and then we will cross that next bridge when we get to it. Thanks, again.
  • mark38381
    mark38381 Goldilocks1950

    Posted

    hello goldilocks, as a person who also suffers pain i can feel his feelings. i think the only people who will understand him is the people who are almost in the same position as he are. my sudgestion to you is be patient. and dont make him feel like you too are hopeless about him getting better.

    make him watch some inspirational videos about life and its wonders, videos of people who also suffers disease and still live life to its fullest.

    music also helps too not the lonely ones though, music you know that he enjoys when he was younger.

    this disease is uncurrable and the only thing you could ask about is relief mentally and physically. and accept that you are not what you are ones was.

    fatigue and weakness is essential normal in people with ra as the pain is excrutiating that you only want to rest cause every move feels like needless are piercing your joints and skin. my advice is enjoy every moment.

    • Goldilocks1950
      Goldilocks1950 mark38381

      Posted

      Wow, Mark. I live with him but still cannot even begin to imagine the pain and fatigue that you all live with day in and out. My husband has some osteoarthritis as well and I'm thinking either that or the RA has got him hurting all the time. I guess I should be glad that he can at least sleep and be away from the pain then. He loves gospel music and Elvis so I sometimes switch our tv from his favorite old western to one of the gospel music channels. He does enjoy that! Thanks so much for your input and take care of yourself!

    • mark38381
      mark38381 Goldilocks1950

      Posted

      yup goldilocks, the first months i was very irritated and almost lost everything. but then after the denial stage, he would accept it. anyway if the medicines and diet work out there is a remission stage in ra where in crp, esr are normal and number of painfull joint are lessen to almost zero in this stage you would be pain free for a week, month or even a year this is the golden days of all ra sufferers. it is not cured so dont stop the meds but the disease is supress. i heard one where in he did not suffer any symtom for 9 months. then he stop the meds beacause of the swine flu outbreak the symtoms came back. alsi do your research about the disease to better understand this.

      goodluck!!!

  • terrybaby
    terrybaby Goldilocks1950

    Posted

    I'm sorry if I missed it in your post, but have none of his health care providers suggested the use of a biologic?

    I found it was life changing in helping with new pains (i have extensive existing damage in my knees/double knee replacement and nothing is going to really help there) such as my ankles, which at one stage had me thinking I was going to be in a wheel chair in a couple of years, and my wrists which were in constant agony.

    Do his pre-existing conditions perhaps prohibit him from using one? I know I had to have an chest X-ray before I could take it to see if I had dormant TB, as it was moderately common (by that I mean a remote possibility) in people my age in Australia to have had it very mildly in childhood and to have been unaware of it. A biologic can then make it flare up.

    • Goldilocks1950
      Goldilocks1950 terrybaby

      Posted

      He has been prescribed Orencia but due to the cost, we are trying to get the Veterans Administration to get it for us and it appears they are going to. This is for the once weekly injection. If that doesn't pan out for some reason, he can get Orencia infusions and that will go through medicare. So, we hope it will help him. He did remicade infusions but that didn't do much.

    • Goldilocks1950
      Goldilocks1950 terrybaby

      Posted

      Thanks and just a quick update...he fell yesterday and rolled his ankle which caused a horrendous break of the tibia and so now he will be either in the hospital or rehab/nursing facility for probably several weeks. And he also tested positive for type A and B influenza. This poor man just can't get a break from health issues.

    • terrybaby
      terrybaby Goldilocks1950

      Posted

      Oh, your poor husband! He has my sympathy. You both must be at the end of your tether. To use the old cliche: "It never rains, but it pours." Additionally, an accident like that will sap his confidence and make him more reluctant to get exercise.

      One advantage of being in hospital/rehab is that he might now be in a place where they will be able to devote time to do some long term sorting out of his health problems, and get a cohesive action plan.

    • Goldilocks1950
      Goldilocks1950 terrybaby

      Posted

      I am hoping this is going to happen. Its crazy but sometimes when he has been either in the hospital or rehab, he does flourish because of the constant attention. He's a flirt and the nursing staff always seem to just love him and go out of their way to do things for him! I am praying that his depression won't get any worse and he will have the drive to get back on his feet and live life again.

    • Gloria814
      Gloria814 Goldilocks1950

      Posted

        maybe he will flourish there with nurses and other staff around   They will devote more time to dealing with his health issues hopefully.   You might mention to the doctor that he is depressed if the doc is not aware of it   There are some medications that are for depression that also help with pain. But I don't know with the extent of his other issues they may not want to add more drugs.   I assume you have gotten the paper work taken care of that would appoint you as health care proxy.  I believe you are from the US and that is the term they use in this country.  He still makes his own health care decisions for now however if he is able to do so.   I wish the two of you the best 

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