Dear Grandma,

First let me express my heartfelt sympathy for your recent loss of your beloved husband. It has been my privilege to pray for you all and follow along for a few months with the blog. I rejoice with you that he is now in heaven rejoicing with the saints who have gone before us—my precious mom being one of them. And what a faith-filled and faithful life to Christ he lived. Praise God!

I’ll get right to my question: After living with a person with PD [Parkinson’s disease], what advice would you give me for the journey? My husband was [recently] diagnosed with PD…I have read much to gain understanding and how to help but would appreciate wisdom from a godly woman who has gone through the experience.

Thank you so much.

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Grandma says:

Thank you for your kind words of sympathy. What a blessing it is to know that others care.

I recall first hearing from our neurologist that my husband had Parkinson’s disease. My mind immediately envisioned someone we knew who had a consuming type of Parkinson’s and whose family was devastated. I was pleased to have our doctor say that no two patients are alike. So first of all, don’t compare your husband with any other Parkinson’s patients.

Life is fleeting for each of us. Be sure that eternal things are cared for: first of all, salvation. Try to care for broken relationships so that your lives are free to face each challenge as it appears.

We found that home nursing care through our local hospital was a tremendous help. [When you call, ask if they offer “palliative care.” You may also click here to learn more about palliative care and to see if it is available in your area.] In my husband’s final months, the local hospital’s home hospice care was a true blessing. They were a teaching, caring, and comforting cluster of professionals. We truly felt that their presence was like having family here who loved and wanted the best for my husband.

Ben often mentioned how thankful he was that he did not have pain with his situation. He had weakness, but he did not have pain.

Get on the mailing list for the Parkinson’s Disease Foundation right away. Each of their newsletters contained at least one piece of information that we could apply to my husband’s journey at that time. [You can click here to visit the website for the PDF and order free informative materials, including their newsletter.]

We were able to keep my husband in our home until his death, thanks to a supportive, involved family. Even with that support, not everyone chooses to or is able to do that. You want whatever is best for your loved one. For some, that may be nursing home care in a carefully chosen care facility. Advice will be abundant, but at the end of the day, you must do whatever is best for him and for you.

Be alert to his symptoms. [These are available on the Parkinson’s Disease Foundation’s website mentioned above.] Do not be embarrassed about seeking advice, as needed, from your doctor. Swallowing becomes very difficult for most people with PD, so be prepared for this. Palliative care may have “speech therapy” available to teach him some swallowing exercises, which we found very beneficial. However, if or when he begins to drool without the ability to control this, help him to understand that this is a normal part of the disease and let him know that you understand that he is not doing this intentionally. It happens. If you face his symptoms with understanding and not embarrassment for him, others will react in the same way.

Be patient. Things that used to come easily will now take more time to accomplish or to understand. If you will build this added time into your schedule and allow for this, there is less stress or pressure for your patient to be expected to do what he is no longer capable of doing.

At a certain point—and you will know when that is—he will become your first priority. Sometimes, that literally means 24–7 care. Your second priority, I believe, is maintaining order in your home. Routine and structure are imperative for Parkinson’s patients, and a well-ordered home helps make that aspect easier for everyone.

Develop activities that will help to pass the long, quiet hours for a chair- or bed-bound patient. We loved reviewing memorized Scripture; reading the Bible together (in late months from an easily understood and concisely written children’s Bible story book); singing favorite hymns, choruses, and songs from years gone by; remembering events from the past; and I often sought his advice on some of the choices to be made for things like what to have for supper, what he wanted to wear the next day, and a plethera of other topics that fit his interests and desires. (These are not choices regarding death and funerals; that should be cared for at the earliest possible time).

My husband rejoiced often in the faithfulness of God, and I also rejoice in the faithfulness of my husband.

May your journey together be filled with sweet fellowship so that there are no regrets.

With love,

Grandma (Lorraine)

Do you have a question for Grandma (about marriage, children, women’s groups, being a caregiver, etc.)?

Send your question to: Grandma@PetalsfromtheBasket.com

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