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Care Giving For Better or Worse

Introduction to 24 hour caregiving and our journey

Hi Everyone 🙂 I am super excited to get my first blog post written! I will start with a short introduction to who I am and why I’m writing this blog.

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I am a full time care giver to my husband. My husband is 53 years old and has a very long list of diagnosis’s : Congestive Heart Failure, Renal Failure, Hypogammaglobulinemia ( a very rare disease and not easy to learn how to say!) and Early On-Set Alzheimer type Dementia. I have been caring for him full time since 2013 and part time prior to that. We have been married 30 years and have 6 children and 7 grandchildren.  All of our children are grown and the youngest will graduate from High School this May. Four of our children still live at home to help me in caring for their father. Care giving is definitely a team effort in our house!

I am excited to get to know other care givers and hopefully help some others that are just starting their journey with 24/7 care giving.

Multi-Colored Little Humans!!!

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Today the kids all had the day off from School for Good Friday. The house was in full swing bright and early.

I do think having so much activity in the house all day does add to my husbands anxiety level. He has medication to help with his anxiety but it just did not seem to help today. He was very verbally aggressive and TAG I was it today!

My husbands case manager/ health social worker came for her monthly visit today. She is always so supportive and helpful to me. We are so lucky to have her in our lives. I do have concerns that with all the crazy changes they are making to health insurance, that someday we wont have her on our team for his managed health care. They are constantly cutting cost these days so I am sure they will get rid of case managers at some point. She did say today that she sees a huge decline in my husband just since last month. This should not even surprise me but I guess we all live in a fog of denial sometimes.

Tonight was time to dye the Easter Eggs! Wow the grankids had a blast! They are ages 7, 5, 19 months and 9 months so it was very messy! Now I have multi colored little humans running around the house. They can’t wait for the Easter Bunny to come Sunday to see the special eggs they made for him.  The youngest now looks like he is turning into a Smurf from the blue egg he colored!

Happy Birthday— Maybe?

Today was my husband 54th birthday. We all tried to make the best of it …. to the best of our ability.

His nurse practitioner came for a home visit. She comes once a month and checks his lungs, heart fluid balance as far as swelling due to the congested heart failure. She made a huge deal when she came in the door that it was his birthday but he didn’t really seem to respond much. We talked for awhile about how he has lost all his affect and emotions seem to be something he does not express. The only emotion he really shows to me or the kids is anger/ stubborn/ disagreement . She said oh yes its the Alzheimer/ dementia all part of the disease process. I totally agree but it don’t make it any easier!

Our son called and skyped with his Dad for awhile, which was so nice of him because he is a very busy man with working 75 hours a week for the oil industry. We got to see the grandkids that was so nice! I wish I was able to go to California to spend some time with them but it is just not possible for me to afford a paid caregiver for a week or two. It really feels like I am supposed to be enjoying this time in my life and I am stuck.

I wonder sometimes what I will do when I am not in this caregiver role. I think I have been in this caregiver role for so long that I don’t even know who ME really is anymore. Well, it is what it is so for now I need to find ways to be content with the situation I am in because I need to think of the kids and what is best for them.

Asking for Help…. the guilt

Lately I have feel extremely guilty for asking help of the adult children to help with their father. They do help a lot and I am proud of each and everyone of the kids for stepping into the caregiver role.

As a mother I feel it is me that is responsible to protect them, shelter them from unjust things in this life, and help them as much as I possibly can. Since taking on the full time caregiving for my husband, it seems as I am the one that has to ask for support from my children. Something inside me says…. this is not right ….. they are supposed to be asking my support not me depending on them! Some times the guilt from this feeling is unbearable. They as young adults should not have to alter their lives to provide care for their father when I need help.

There is no easy answer to this problem…. and I think all mothers that are in my situation do experience some level of guilt when asking for help from her children.

Doctor Doctors & More Doctors!

Today was a very challenging caregiver day. I have said over and over I need to learn my limits. I am constantly over scheduling myself and this leaves me feeling drained and overwhelmed!

I had an appointment this morning to attend with our daughter with the IRS for her taxes. She needed some help because her ExBoyfriend had caused some problems by claiming one of the children when he was not legally allowed to do so. Wow would I hate to be him because the IRS will get it all figured out and he is going to be paying for what he tried to do. Who steals money that could have gone to their child??? It is called fraud and he will know what it means when the IRS informs him!

After dealing with all that….. It was rush to get husband to get labs drawn so the doctor would have the results by the 3pm office appointment. With my husband having dementia and all the health problems it just is not good to have two things for him to go to in one day.

I managed to accomplish everything but I need to manage things better so its not so much in one day!

GOALS TO COMBAT FEELING OVERWHELMED

  1. Schedule no more than one appointment in one day
  2. Be assertive about setting boundaries to keep my limits
  3. Keep a calendar with everyone’s schedules so things get scheduled when I don’t have other responsibilities
  4. Schedule time for MYSELF!!!!!!!!
  5. Challenge the negative self talk and distorted thoughts– Do NOT feel guilty if I can’t do everything for everyone!